Cancer.Net Podcast

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In this podcast, Cancer.Net Associate Editor Dr. Guillermo Garcia-Manero will discuss some of the new research in leukemia and myelodysplastic syndromes, or MDS, that was presented at the 2018 American Society of Hematology Annual Meeting, held December first through fourth in San Diego, California.

Dr. Garcia-Manero is the Deputy Chair of Translational Research and Professor, Department of Leukemia, at The University of Texas MD Anderson Cancer Center in Houston, Texas. He is also the Chief of the Section of Myelodysplastic Syndromes at MD Anderson Cancer Center.

ASCO would like to thank Dr. Garcia-Manero for discussing this topic.

Dr. Garcia-Manero: Hello, I'm Guillermo Garcia-Manero. I am 1 of the leukemia physicians at the University of Texas MD Anderson Cancer Center, where I also serve as the chief of the section of myelodysplastic syndromes. I'm happy to do this podcast today, trying to highlight a few of the studies that were presented at ASH this past December 2018. I have to start saying that this is basically mission impossible because the good news is there were so many important presentations, with active meaning for our patients, with new drugs, and that makes the selection of these 4 presentations extremely difficult. I'm going to mainly focus on presentations on myeloid malignancies, mainly MDS and AML.

And I'm going to start with the first presentation. It's a very important phase III trial that was conducted all over the world, known as the MEDALIST trial. This study was, again, a phase III trial, was presented by Dr. List from the Moffitt Cancer Center, but it was a large effort, basically, countries all over the world. And the idea here was to test the activity of a compound known as luspatercept. This is a brand-new drug. This is an antibody that basically has the capacity to affect signaling of TGF-beta pathway in MDS. And the hypothesis is that by doing so, it may promote the capacity of the bone marrow to produce red cells and therefore improve or ameliorate anemia. As all of you know, anemia is a major complication of multiple disorders, in particular, myelodysplastic syndrome.

So the study was a randomized study. The patient population was for a specific subset of patients with myelodysplastic syndrome that are known as patients with refractory anemia with ring sideroblasts. And these patients had received already prior therapy, mainly with a growth factor, drugs like erythropoietin. The study had what they call a 2:1 randomization, meaning that for each 3 patients, 2 got into the investigational compound, luspatercept, and 1 into placebo. This drug has already been tested on prior phase I, phase II studies and is extremely safe, and we know that we can administer this compound every 21 days. The major endpoints of the study were basically to see what was the rate of transfusion independency, and that actually is measured every 8 weeks. This is criteria that investigators in the field pick. And there were other endpoints, like 12 weeks, and then also measuring increases in hemoglobin and, importantly, of course, duration of response.

This data was quite significant, and it's probably one of the first phase III trials for patients with myelodysplastic syndromes that is positive in many years. The primary endpoint, again, that was transfusion independency in the first 8 weeks, was met. So patients on the luspatercept arm had an improvement in their transfusions. The [inaudible] was close to 38% versus 13% for those patients who were on placebo, and this was highly significant. Most importantly, when the investigators looked at the duration of response, this was also significantly in favor for those patients that received luspatercept. So, in other words, not only was there higher response rate with this new agent, the response is also longer. So that is very important. And then, as I mentioned earlier, in general, these compounds are extremely well tolerated without a major, significant toxicity issue.

So we are excited about these results because it may be—of course, this drug is not yet approved by the FDA. But the expectation will be that this would be an excellent compound for this first subset of patients with myelodysplastic syndrome. But there is already an ongoing phase III trial for patients with MDS, low risk, that have not received any prior therapy. So we're moving into front line with this particular compound. And there was also some very interesting data in patients with thalassemia, that was also positive. So it has implications beyond myelodysplastic syndrome.

I am not sure what the future development of this compound will be, but I think it's going to have multiple applications in solid tumor malignancies, potentially as an adjunct in patients receiving induction chemotherapy for acute leukemia. And there are also some ongoing clinical trials in myelofibrosis. So that was very exciting.

The second study that I would like to highlight is a study known as TELESTO, and this is basically a clinical trial where patients with low-risk MDS were randomized to received iron chelation with a drug known as deferasirox or not. Why this is important is because, over a decade ago, this compound, deferasirox, was approved for patients with a number of disorders, including myelodysplastic syndrome, that had evidence of iron overload. So in myelodysplastic syndrome, because of the need for red cell transfusions, it is not uncommon that patients will accumulate iron. And that in itself can result in complications for the patients, such as liver damage, heart damage, etc. So, despite the fact that this drug was approved, the way it was approved was on non-randomized clinical trials. So we never actually knew for a decade whether there was true benefit to this compound or intervention in patients with lower risk disease and anemia with iron overload. And why this is important to know is because this drug, although it's an oral compound, it can have some side effects that can be significant, and there's also a cost issue with this approach for our patients.

The study was actually designed many years ago. I was part of the group that designed this clinical trial. And originally, it was designed to test whether iron chelation was going to result or not only in improvement in overall survival. And the original design was going to involve, I believe, over 800 patients. When the study was opened, it became clear that this was not going to be feasible because this drug had already been kind of embraced by the community as a standard of care. So the study actually was then modified with the advice of the authorities, mainly the FDA, and it became this study where the main endpoint was event-free survival.

Similar to the study that I discussed earlier, this had 2:1 randomization, and patients were randomized into deferasirox or placebo. And because these are tablets, that was quite easy to do. Again, the main objective was to evaluate event-free survival, but we were also interested in looking at overall survival and other biomarkers like ferritin levels, [inflammatory?] responses, and some of the comorbidities that are associated with iron chelation.

The study, again, was positive. And what these investigators—and this data was presented by Dr. Angelucci, who is from Italy—clearly indicated that there was a longer event-free survival for those patients that were treated with the iron chelation drug deferasirox compared to those that do not. And, indeed, actually, the risk reduction was almost 37%. So this data is important because it establishes a potential role for iron chelation in our patients. Now, there is a major limitation, of course, of this drug. That is, unfortunately, we cannot really measure or state that the overall survival benefit was clearly achieved by this compound. That said, actually, there was an improvement also in overall survival for patients treated with this compound, but the hazard ratio was significantly higher than that for event-free survival. And again, this study is likely not powerful enough to really clearly demonstrate an improvement in survival, although it clearly demonstrated this other event-free survival improvement. The other limitation of the trial is that we don't know why the event-free survival is better. That is something that is not clear from this data analysis. But the reality is that, in my mind, this is the only and probably will never be repeated randomized phase III trial of iron chelation. And I think it shows that this is associated with a clinical benefit for our patients.

The next study that I would like to present is a study for patients with acute myelogenous leukemia, and this was a study presented by Dr. Maiti from Houston. And it's one of the multiple studies that looked at the addition of venetoclax to drugs like decitabine or azacitidine for patients with acute myelogenous leukemia. As many of you know, during the meeting, this new agent venetoclax, or ABT-199, was approved for patients with AML. And this was based on a number of clinical trials that had been done at multiple centers. So there were multiple presentations, but I can tell you that this was one of the most exciting topics of the ASH meeting, the addition of ABT-199, or venetoclax, to either decitabine or azacitidine for patients with AML.

So venetoclax, or ABT-199, is a drug that modifies apoptosis. Basically, the idea is that enhances cell death in these leukemia cells. And data from Dr. Konopleva and other investigators have indicated that there is synergism between venetoclax and the hypomethylating agent, either azacitidine or decitabine. And there are a number of studies showing actually very high response rate with these compounds.

But I highlighted this study because it looks like a different alternative schedule. Here, the investigators gave 10 days of decitabine with venetoclax for basically every day of the month, and they reported an overall response rate that was over 90%. And what I think is striking, that half of these patients with acute myelogenous leukemia achieved what we call minimal residual disease status. So they were MRD-negative with this therapy, indicating that there was eradication of the leukemia clone. The follow-up on this study was short, but the survival actually was close to over 95%. So we all believe that this very exciting data, whether you administer this with 10 days of decitabine or 5 days of decitabine or with azacitidine. And it's likely now becoming the standard of care for most patients that are receiving a hypomethylating agent for acute myelogenous leukemia. So this is extremely good news for our patients, and it will open up to multiple other combinations.

And to finish, I will bring one of the last presentations in myelodysplastic syndrome. But I think that this is a topic that has also implications for other myeloid malignancies. So this is Abstract Number 465, and I had the opportunity to present this poster. So this is a study performed mostly in Houston, where we combined azacitidine with drugs that are known as immune checkpoint inhibitors, drugs like nivolumab or ipilimumab. The hypothesis for this is that it turns out that the leukemia cell or the MDS cell express molecules like PD-1, CTLA-4 on their surface. And similar to what you see in solid tumors, where these compounds are extremely effective, for instance, for melanoma and other solid tumors, it is possible that these compounds could also have activity in these myeloid diseases. So we have tested these in a clinical trial, combining these immune checkpoint inhibitors with azacitidine. And we have tested this in patients with high-risk MDS that have not received prior therapy or in patients with relapsed refractory disease that already have failed a hypomethylating agent like azacitidine.

The study actually has accrued almost 100 patients, and we believe that this data is very important. So what we first found was that the combination in the front line of immune checkpoint inhibitor, such as nivo or ipilimumab with azacitidine, is associated with a very high response rate. So the overall response rate, for instance, with azacitidine-nivolumab was over 70%, and it was over 60% with AZA-ipilimumab. But that's not what I think is important from this presentation. What was important was that the duration of response, particularly in the combination of azacitidine and ipilimumab with a follow-up on this clinical trial of around 20 months—this is quite a long number—had not been reached. And we have not had data like these in any of the prior studies that we have done with doublets, for instance, with HDAC inhibitors or other compounds. Now, there is a limitation of this, that the incorporation of this immune checkpoint can be toxic. This is something that solid tumor oncologists are familiar with, but it's a little bit new for us. It can cause things like pneumonitis—this is lung inflammation—colitis, skin rash. These sometimes are difficult to treat, so this is not ready for standard-of-care type of approach. But I think it's going to be an important part of the armamentarium for our patients with myelodysplastic syndrome.

So with that, I would like to conclude, perhaps, do a very quick summary. I presented to you 4, what I think, very important presentations. The first one was a new drug for MDS called luspatercept. This may be very important to treat anemia, and we are excited about future development of these compounds. The second presentation was about iron chelation in MDS. This has been an area of huge debate in our field, and this data I think supports further the use of these types of compounds for our patients with iron accumulation. Third, the data with ABT-199, or venetoclax, with decitabine in AML is really important. And I think it's now established as the standard of care for those patients not fit for chemotherapy. And finally, this data with immune checkpoint inhibitors indicates that there may be an important role for these compounds also in MDS, and other presentations at the ASH meeting in AML suggested kind of the same. And with that, I want to thank you for this opportunity and your time.

ASCO: Thank you, Dr. Garcia-Manero. Learn more about leukemia and MDS at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In this podcast, Cancer.Net Associate Editor Dr. Norah Lynn Henry discusses new research that was presented at the 2018 San Antonio Breast Cancer Symposium, held December fourth through eight in San Antonio, Texas. Dr. Henry is an Associate Professor in the University of Utah's Division of Oncology in the Department of Medicine, and Leader of the Women's Cancers Disease Center at the Huntsman Cancer Institute.

ASCO would like to thank Dr. Henry for discussing this topic.

Dr. Henry: Good morning. I am Dr. Lynn Henry, a breast medical oncologist at Huntsman Cancer Institute in Salt Lake City. I would like to share with you one of the exciting breast cancer advances from the 2018 San Antonio Breast Cancer Symposium that was recently held in San Antonio, Texas. First, just a reminder that breast cancer is divided into 3 main categories determined by the presence or absence of receptors on the cancer cell. These categories include hormone receptor positive, HER2-positive, and the so-called triple-negative breast cancer, when all 3 of those main receptors are negative.

The study I'm highlighting, which is called KATHERINE, focused specifically on patients with HER2-positive breast cancer. The most commonly used antibody medication used to treat HER2-positive cancer is called trastuzumab, which is also called Herceptin. In the KATHERINE trial, the researchers were testing a different but related drug called trastuzumab emtanzine, which is also called Kadcyla. This new drug is the trastuzumab antibody linked directly to a type of chemotherapy drug. This allows the chemotherapy to be directed specifically to the HER2-positive cancer cells, so it generally causes fewer side effects than typical chemotherapy. Since the generic names of the medications are quite similar, I'm going to refer to them as Herceptin and Kadcyla in the rest of this podcast.

Many patients with HER2-positive breast cancer have treatment with chemotherapy and anti-HER2 drugs, like Herceptin, before they undergo surgery in order to try to shrink the cancer and ideally make it all go away. About half of the patients treated this way have no cancer found in their breast or lymph node when they have surgery, but the other half still have cancer remaining. Regardless of what is found at surgery, all patients are usually recommended to have additional treatment with Herceptin after surgery, so they receive a total of 1 year of Herceptin treatment. The KATHERINE trial is important because it asks the question, "Do women who still have cancer left in the breast when they have surgery after chemotherapy and anti-HER2 therapy—do they get more benefit from treatment with Kadcyla, which is Herceptin with the chemotherapy drug, for about 10 months after surgery compared to the standard treatment Herceptin?"

In this trial of almost 1500 patients, those who were treated with Kadcyla were much less likely to have their cancer return compared to those treated with Herceptin. The new treatment decreased the risk of cancer returning by about half. Patients with both hormone receptor-positive and hormone receptor-negative breast cancer appeared to benefit from this treatment, however, the downside was that patients treated with Kadcyla had more side effects and were more likely to have to stop the medication because of those side effects. We don't have any information yet about whether or not this new medication will allow patients to live longer following their breast cancer diagnosis, but we do know that it means they're less likely to have their cancers coming back.

So how do these findings change treatment recommendations? Before these data were available, oncologists were recommending Herceptin to all patients following surgery. Now, it is likely that once this new medication is approved to be used for this purpose, oncologists will recommend treatment with Kadcyla to those patients who still have cancer remaining at the time of surgery. In terms of what to expect going forward, there are many other trials ongoing to determine how best to treat patients with HER2-positive breast cancer in order to decrease the likelihood of cancer recurrence as much as possible, while also avoiding overtreating those who don't need as much therapy.

Well, that's it for this quick summary of this important trial from San Antonio 2018. Overall, we continue on a fast track in breast cancer with many new and exciting therapies being actively studied and research helping support our patients do better than ever before. Stay tuned to Cancer.Net for future updates from upcoming breast cancer conferences. Thank you.

ASCO: Thank you, Dr. Henry. Learn more about breast cancer at www.cancer.net/breast. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In this podcast, Cancer.Net Associate Editor Dr. Michael Williams will discuss some of the new research in lymphoma that was presented at the 2018 American Society of Hematology Annual Meeting, held December first through fourth in San Diego, California. Dr. Williams is the Chief of the Hematology/Oncology Division and Director of the Hematologic Malignancies Program at the UVA Cancer Center, and Byrd S. Leavell Professor of Medicine and Professor of Pathology at the University of Virginia School of Medicine.

ASCO would like to thank Dr. Williams for discussing this topic.

Dr. Williams: Hello. This is Michael Williams. I'm a professor at the University of Virginia Health System in Charlottesville, Virginia, and I'm reporting today on some exciting advances in lymphoma that were presented at the Annual Meeting of the American Society of Hematology, which was held in San Diego, California in early December 2018. Well, there were a number of areas of lymphoma that had important reports, and I'm going to just give you a small sampling of these today.

We'll start with a new treatment option for patients with follicular lymphoma. Traditionally, this type of lymphoma, when it's symptomatic and needs therapy, the treatment of choice has been chemotherapy combined with a monoclonal antibody such as rituximab or obinutuzumab. But investigators, in a multicentered trial, decided to test whether you could use a chemotherapy-free treatment approach for patients like this by using rituximab combined with lenalidomide, which is also known as Revlimid, as a substitute for chemotherapy. And this is based on the fact that Revlimid plus rituximab has synergistic activity in patients with relapsed disease, so maybe we could see acceptable, high responses when it would be compared directly with rituximab plus chemotherapy.

So the way the trial worked is this. Patients who needed therapy, who had advanced-stage follicular lymphoma—they had never had any therapy before—were randomized to either the rituximab-lenalidomide combination or a rituximab-chemotherapy combination that could include the regimens CVP or cyclophosphamide, vincristine, prednisone, the same combination given with daunorubicin, or the CHOP regimen, or rituximab combined with bendamustine.

So over 1,000 patients were treated in this multinational study and the goal of the treatment, of the study was to prove that, actually, the ritux-lenalidomide was superior to the chemotherapy regimens. So the results showed, not superiority, but comparability. The complete remission rate between rituximab-len and ritux-chemotherapy were really identical, 48 and 53 percent, and the 3-year likelihood that the patients were progression-free, so had had no recurrence of their disease, was identical as well: 77 to 78 percent. There was no difference in survival which was 94% at 3 years in both arms.

The toxicities differed, however. There was more rash with the lenalidomide combination, whereas low blood counts and the need for growth factor support such as G-CSF was greater with chemotherapy. And it was also interesting that some of the traditional risk factors didn't seem to apply, as much, for lenalidomide. So what would be considered higher risk patients treated with chemotherapy, seemed to do somewhat better with the lenalidomide combination. The importance for a patient with untreated follicular lymphoma who needs therapy is that a chemotherapy-free approach with rituximab plus lenalidomide can be considered equivalent to rituximab-chemotherapy. It's worth discussing this with your oncologist when you're considering what treatment to use initially.

The next subtype of lymphoma that I want to discuss is diffuse large B-cell lymphoma, and there's 2 presentations that I'm going to summarize. One, in patients with advanced stage disease, meaning stage III or IV. This identifies patients who have disease both above and below the diaphragm, to make it stage III, or stage IV means they've got bone marrow or other sites of involvement such as liver or bone. And the question being asked in this trial, which was part of the International GOYA trial, will take just a moment to explain. So the original GOYA trial compared whether a newer form of anti-CD20 monoclonal, namely obinutuzumab, which is also called Gazyva, how that would compare with the standard established monoclonal antibody, rituximab. And the initial findings of this study found that there was no benefit for the newer antibodies. So rituximab and CHOP chemotherapy was equivalent to obinutuzumab and CHOP chemotherapy in overall outcomes.

But there was an opportunity with this trial to answer a question that's been out there for many years, and that is how many cycles of treatment does one need? So the investigators took advantage of this large study which included 712 patients who were randomized to rituximab plus CHOP. Just over 500 of them received 6 cycles, and the remaining 186 received 8 cycles. Even the patients who got 6 cycles of CHOP chemotherapy also got an additional 2 doses of rituximab, so the immunotherapy monoclonal antibody was equivalent between the 2 arms. And the results of this showed that there was really no difference at all with a followup of about 3 years. Response rates were equivalent and there was no difference in the patients staying in remission. It didn't matter in terms of survival which was excellent in both arms. There was, however, more toxicity in patients who received 8 cycles, including cardiac problems, infections, etc.

These results showed that, I think we can finally put to rest the use of 8 cycles of rituximab-CHOP chemotherapy for advanced-stage large cell lymphoma. It's been an unknown entity because we never had a direct comparison of these. So we can now say that 6 cycles plus the additional 2 doses of rituximab is a standard for advanced-stage diffuse large B-cell lymphoma.

Now, what about patients who have limited-stage, so stage I or II diffuse large cell lymphoma? That means just a single lymph node area's involved or 2 adjacent lymph node areas. In the past, these were treated either with 6 cycles of rituximab-CHOP or sometimes cycles of R-CHOP plus local radiation therapy. And in this study, which took a long time to complete; it began in 2005, but it enrolled 592 patients who were then randomized to either 4 cycles or 6 cycles of treatment. Radiation therapy was not planned for any of these patients except for very specific locations of involvement such as testicular DLBCL where radiation therapy is a standard.

So the take-home message after over 5 years of follow-up for patients on this study showed that 4 versus 6 were identical. So 89% of patients were still in remission at 3 years after completing treatment, and the overall survival was really impressive, 98 to 99 percent in the 2 arms. So there was no benefit with limited-stage favorable disease. Now, who are these patients? So younger than age 60, stage I or II disease, and normal LDH. They did not have bulky disease, meaning there was no nodal mass more than 7 and a half centimeters. So if you fit those criteria, then you can benefit from a de-escalation of treatment and be spared the additional 2 cycles of R-CHOP.

Now, sticking with the topic of diffuse large B-cell lymphoma, a challenging problem in our field is for patients who relapse after their initial therapy, or in some cases, fail to respond to a treatment like rituximab-CHOP or an equivalent immuno-chemotherapy regimen. And a very exciting advance in the field, over the past few years, has been the development of chimeric antigen receptor T cells or CAR Ts. Traditionally, what we've done with patients who relapse or have resistant diffuse large cell lymphoma is to give them a second-line, high-dose chemotherapy regimen, and if they showed a good response to that, they could then go to a dose-intensive treatment with a follow-up consolidation by autologous stem cell transplantation. And with that, you can cure, overall, about 40% or so of patients. The CAR T-cell approach takes a very novel immunotherapy effort, and that is that a patient's own T-cells are removed from the peripheral blood, and then in the laboratory, they're modified and reprogrammed so they can attack the patient's diffuse large B-cell lymphoma cells that are resistant to chemotherapy.

So there were 2 important follow-up studies, each of them involved 1 of the agents, the CAR T-cell products, that are approved by the Food and Drug Administration for patients with relapsed or refractory diffuse large cell lymphoma. The first used the CAR T known as axicabtagene ciloleucel. It's quite a complex name, but it goes by the abbreviation of axi-cel or the trade name is Yescarta. So in this study, the investigators wanted to show that this is a treatment that can be extended to many centers with the product, the CAR T being made in a central facility by the pharmaceutical company. So it was a retrospective study of 295 patients at 17 international centers: a lot of patients across a broad spectrum of sites in North America and Europe.

Virtually all the patients were able to develop and obtain a CAR T product. It included patients with some of the higher risk forms of the DLBCL such as double and triple-hit lymphoma. About 3% of patients died during the treatment, although only 1% of these were felt to be related to the treatment itself. The response rates were quite good, with about 80% of people responding. The complete remission rates at 30 days after the CAR T infusion were 47%. So it proved that you can use this centrally manufactured product. So the patients T-cells are collected at the local center, they're shipped to the manufacturing facility, the CAR Ts are generated, sent back to the home institution, and then infused. And I'll say a word in a moment, after I introduce the next paper, to explain some of the side effects of this treatment.

So the second study was also presented at the ASH meeting and published simultaneously in the New England Journal of Medicine in early December 2018. So this used the second FDA approved CAR T known as tisagenlecleucel or Kymriah. In this study, there were 93 patients who were able to receive a CAR T-cell infusion, 40% of them achieved a complete remission, and another 12% had a partial response. And that a year after their documented response, two-thirds of these patients were maintaining the response, including 79% of those who achieved a complete remission. So this trial again confirmed across multiple centers that CAR T-cells can be an effective therapy.

The side effects of both of these drugs can include something called cytokine release syndrome where the immunologic effects, essentially, release cytokines into the blood that can mediate a capillary leak, respiratory troubles, and low blood pressures, that can, in some cases, require intensive care unit support. This can be managed by other mediators that tamp down the cytokine effect such as an interleukin-6 antagonist.

The other toxicity which is less well understood and problematic can be neurologic effects which can include confusion, speech alterations and even coma. But again, approaches and treatments to identify and manage this are being developed. So CAR Ts have become established. They're available at a number of centers, but it's important to consider this as a treatment option in the setting of relapsed or refractory diffuse large cell lymphoma. The long-term curability is still unknown, although it's encouraging that patients with very resistant disease who'd get a good response can maintain that response out to a year and more. So we're going to be very interested to see how the longer-term follow-up comes together.

The final topic I wanted to mention today is Waldenstrom macroglobulinemia. So this is a unique form of indolent B-cell lymphoma where the lymphoma cells release a monoclonal immunoglobulin into the blood known as IGM. Now, IGM is a very large antibody, and because of that, when the levels are very high, patients can have problems with high viscosity or thickening of the blood, which can cause confusion, vision changes, sometimes respiratory problems. And these patients also can become anemic or develop enlarged lymph nodes or enlarged spleen. So one of the standard treatments for this disease is, again, the immunotherapy monoclonal antibody rituximab, but the responses are typically incomplete and somewhat short-lived. So it was exciting, a couple of years ago, when the targeted tyrosine kinase inhibitor, ibrutinib, which targets the bruton tyrosine kinase in malignant B-cells. This is an agent that's approved in chronic lymphocytic leukemia, and certain lymphomas such as mantle cell, marginal zone, as well as lymphoplasmacytic lymphoma or Waldenstrom macroglobulinemia.

So here's the study. Investigators had shown that if you combine rituximab with ibrutinib, that the response rates were improved as compared with rituximab by itself. And in a follow-up study that looked at this over a longer period of time, these benefits of the combined therapy were confirmed. These included patients without prior treatment or with prior treatment, with either chemotherapy or rituximab. And there was a confirmed benefit for the ibrutinib-rituximab combination in patients, whether they had had treatment before or not, and regardless of certain genetic markers that we use to assess risk in Waldenstrom. It was also shown that because these treatments continue indefinitely, as long as patients are responding and tolerating therapy, that the response rates improved over time. The side effects of treatment with ibrutinib are well-known, now, after several years of use across a variety of diseases, as mentioned, and include diarrhea, sometimes rash. You can see problems with easy bruising or bleeding, atrial fibrillation, and sometimes skin rash, or muscle and joint aches. But most patients are able to continue therapy and to benefit from it over an extended period of time.

So the combination of ibrutinib plus rituximab was shown to add benefit compared with rituximab alone, and again, is a treatment approach and option that you could consider whether you have previously untreated or relapsed Waldenstrom macroglobulinemia.

So overall, it was a very exciting meeting. We've had practice-changing data presented, and I've given you just a sampling of those. I think it's important for anyone dealing with lymphoma, or related malignancy, such as CLL or multiple myeloma to be very encouraged by the progress in the field, the opportunity to get much better responses with less toxicity and with minimal or no use of traditional chemotherapy. So we're pleased to be able to offer these treatment approaches for our patients. And I thank you for your taking part in the podcast and hope you found it useful. Thanks again.

ASCO: Thank you, Dr. Williams. Learn more about lymphoma at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

In this podcast, Cancer.Net Editorial Board members Dr. Brian Rini and Dr. Jorge Garcia discuss new research in kidney and prostate cancer presented at the European Society for Medical Oncology 2018 Congress, held October nineteenth through twenty-third in Munich, Germany.

Dr. Rini is a Professor of Medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. Dr. Garcia is an Assistant Professor of Medicine at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University. They are both also staff members of the Department of Solid Tumor Oncology at Cleveland Clinic Taussig Cancer Institute.

ASCO would like to thank Dr. Rini and Dr. Garcia for discussing this research.

Dr. Rini: Hello. This is Brian Rini from the Cleveland Clinic Taussig Cancer Center. I'm a professor of medicine and lead the GU program here at Cleveland Clinic, and I'm joined by my friend and colleague Dr. Jorge Garcia.

Dr. Garcia: Thank you, Brian. I'm Jorge Garcia. I'm a GU medical oncologist at the Cleveland Clinic as well.

Dr. Rini: And we're going to talk to you today about highlights in genitourinary or GU cancers from the European Society of Medical Oncology Meeting, which took place a couple of months ago in Munich, Germany. It's one of the major cancer meetings, with a lot of big data starting to be presented at that meeting in addition to the main ASCO meeting and other meetings. And I'm going to start off by talking about a couple of the highlights in renal cancer, and then Dr. Garcia will describe a couple of the highlights in prostate cancer.

In kidney cancer, generally speaking, it's been a pretty exciting time. So about 10 or 15 years ago we went through a wave where VEGF-targeted therapy or therapy targeted against blood vessel sort of became the standard of care. And this was exciting because, frankly, at the time there wasn't much else that was available for patients with metastatic kidney cancer. And that's really been the foundation of how we've treated this disease over the last decade or so. More recently, we've started to use immune stimulating agents, commonly called immunotherapy or IO therapy, as is being used across many, many malignancies, but especially in kidney cancer. And so now we have 2 ways that we treat metastatic kidney cancer. We still use therapy targeted against blood vessels, also called VEGF-targeted therapy, and now we're increasingly using immune therapies. And the most recent efforts at this have actually combined these different modalities.

And so probably the largest data that was presented was something called the JAVELIN 101 trial. So this was a randomized phase III trial that compared patients with metastatic kidney cancer who had not gotten any prior treatment to receive either sunitinib, which is a VEGF-targeted agent that's been our standard of care, again, for the last 10 or 15 years, or a combination of axitinib, which is another VEGF-targeted therapy, plus avelumab. And avelumab is 1 of a class of drugs that I mentioned that are immunotherapeutics. We also call them checkpoint inhibitors because of the mechanism by which they work. And there are many of these combination studies that are starting to be reported. A couple have been reported, this is the third, and there will be more to come over the next 6 to 12 months. It's really transforming the way that kidney cancer patients are treated when they walk in the door. So as mentioned, this was a large phase III trial. And the rationale is really that it's 2 different ways to attack the cancer, both attacking blood vessels and trying to stimulate the immune system.

About 900 patients were treated on this trial, so about 450 patients treated with either sunitinib or this combination therapy. And what was shown was that, the—what we call—progression-free survival, which I usually describe to patients as how long we can control tumors, was significantly greater with the combination therapy. It was almost 14 months, which is, I believe one of the highest ever reported in this disease, compared to only 7 months with sunitinib. So there was a significant advantage in terms of disease control, which was the primary end point of this trial.

What was also looked at is response rate. So when we talk about response, it's really patients who have a significant amount of tumor shrinking on a scan. And what was seen in the overall population who received the combination therapy was that just over half the patients, 51%, had an objective response. And most people had some degree of tumors getting smaller. If tumors get just a little bit smaller we don't necessarily call that a response. If they get at least 30% smaller, that's our threshold for a response. So over half the patients reached that threshold, which is again a very high number compared to usually about 30 or 40 percent with the single-agent anti-blood vessel drugs. And importantly, 3% of patients had a complete response. One of the great things that immunotherapy has done in kidney cancer is change our mindset a little bit from really just trying to control disease to now recognizing that there's a subset of patients who can be cured with this disease. And that really hasn't been true on any large scale ever really, certainly in the time that I've been doing it. And so these new regimens are not only controlling disease longer, but leading to more potential cures of disease. The cure part, obviously, we need more time to pass. We need to follow patients, etc., but I think certainly the possibility is there.

They reported on overall survival results, although, the data was what we call relatively immature, meaning—which is a good thing—that most patients were still alive who had received either regimen. So we can't quite yet say for this regimen that it makes patients live longer, on average, but certainly has benefits in terms of tumor shrinkage and disease control. And with more time, other data will come.

Interestingly, there was also a very similar study involving a combination with axitinib and pembrolizumab. That data was not presented at the meeting, but there was a press release that happened to come out on the first day of the meeting showing that it also had effects in terms of tumor shrinkage and disease control, and interestingly, also showed a survival benefit. So one of the things we'll sort out over the next year or so is the relative merits of each of these regimens. They're certainly not identical. They'll have different side effect profiles, different ways that they help patients, different patients in whom they might help, etc. So the good news is that there are a number of these regimens that are likely to get approved over the next 6 to 12 months, and then comes the next wave of work of trying to figure out how best to apply them to patients, but this is certainly very exciting data. It was the first combination regimen that included a drug like axitinib, that included a pill that inhibits blood vessels.

The other main piece of data that I wanted to go over, I had the privilege of presenting there, which was from a different trial than I just presented, but a similar one. So it was a trial called IMmotion151. And what that trial did was take patients with kidney cancer that had not yet been treated. It randomized them to either sunitinib, as I mentioned, a standard therapy, or to another combination of an immune agent in an anti-blood vessel agent. The names of these drugs were atezolizumab and bevacizumab. It's a regimen that's shown effects in lung cancer and some other cancers.

And the clinical data from this study had been presented at the GU Symposium early in 2018. And what we presented at ESMO was some of the correlates from the study. Some of the secondary scientific analyses that often happen in these large clinical trials. And the details of how these analyses are done are a bit complicated but suffice it to say that if we look at patient's tumors, we can look at the expression of genes from these tumors. And different tumors have different biology. They express different genes. And one of the stories that's emerged from analysis of the samples from this trial and also a small prior trial was that some patients have tumors that are very rich in blood vessels and that are very reliant on angiogenesis, and other patients have tumors that are very reliant on T cells and on the immune system effects, and obviously some patients have both of those types of tumor cells in an individual tumor. And so the data are really starting to show this trend that there's different biologic subtypes of kidney cancer. And anybody who treats patients knows this. We give a group of patients the same drug, and some people respond wonderfully, and unfortunately, others don't, and everywhere in between. And it just means the underlying tumors are different. And these large data sets and large analyses are now starting to sort that out and say, "We now have a genetic basis for those clinical differences that we observe in patients."

I think it's important because it's a first step, hopefully, towards individualizing therapy and not just treating everybody with the same combination. Treating certain patients with one drug, certain patients with another drug, other patients with a combination. And as I mentioned before, there are many of these combinations coming out, so it would be nice to have a test that would allow us to choose the best combination for the best patient. We're not there yet. We're, I would say unfortunately, a little ways from that point. But these data were presented at ESMO, I think, started to take that step by characterizing tumors.

And then the last thing I'll mention is something called sarcomatoid tumors. So the word sarcomatoid is applied in kidney cancer to a subset of about 10 or 15, maybe 20% of tumors that are generally more aggressive. The cells under the microscope are spindle shape. That's what the word sarcomatoid means. And they've always been very difficult to treat. It looks like, however, with these immune therapies that that patient population is particularly susceptible, so they actually do better with immune therapies. And when these genetic signatures were applied to specifically those tumors, not surprisingly, they had a very—what we'd say—an immune rich environment. They were characterized by expression of genes that are relevant to the immune system. So again, it provides a biologic basis for some of the clinical observations that we've made for years, and hopefully, makes us smarter. And I think the immune therapies are certainly going to be of benefit to patients with sarcomatoid kidney cancer, I think that much is clear, and some of the clinical data has pointed towards that. And the ESMO data really provides, again, a biologic basis. Just to summarize kidney cancer from ESMO 2018, one phase III trial presented the JAVELIN 101 with axitinib plus avelumab showing advantages over sunitinib, and then some interesting biologic data. And certainly, more to come with these combos moving forward. I'll ask Dr. Garcia now if he has any comments on the kidney cancer data that I mentioned and then I'll have him describe the prostate update.

Dr. Garcia: Thank you, Brian. I think that's an excellent overview of that exciting data. Perhaps my only comment is that the lack of biomarkers can indeed put a lot of pressure on how we select patients and select therapy for those patients with metastatic renal cell carcinoma. And I think that with the JAVELIN trial and 2 or 3 trials also coming very soon into the space, I think that we clinicians are going to be faced with the challenge of deciding between dual immune-oncology approaches or doing it in a sequential manner. And, for that matter, also perhaps looking at the combination of vascular disrupting agents plus immunotherapy. Clearly, we need to actually look at clinical features of patient disease to make those treatment decisions because we haven't been able to pin down biomarkers that can help us guide which is the best approach for those patients up front.

Dr. Rini: Yeah, I agree. It's a good problem to have that we have so many active drugs, and we're trying to decide which ones to give which patients, but it's going to be a big challenge moving forward.

Dr. Garcia: Great. So let me move now and briefly review what I think is probably the 2 or 3 most exciting reports out of ESMO, in Munich, in prostate cancer. So similar to what Brian mentioned, obviously, there has been a lot of movement into how we manage patients with advanced prostate cancer. I think that the last 3 years have changed how we practice and how we manage patients who are walking in the office with metastatic prostate cancer. That is, patients who either have had their primary tumor resected or have had radiation therapy for primary definitive treatment and over time they will go on and progress and develop systemic disease, or patients who never had their chance to have their prostate treated with either surgery or radiation therapy. The latter group is uncommon because of PSA screening, at least in North America. And we see about 20, perhaps, 30 percent of patients walking in the office with metastatic disease.

So just as a way of background, the standard of care for men with advanced disease for the last 3 or 4 decades has been suppression of testosterone, so-called castration, which is removal of testosterone either medically and/or by surgical orchiectomy. Most of us in the United States just do medical suppression with what we call hormonal therapy, which is basically injections received at various intervals to suppress the function between the pituitary access and the testicles so patients are suppressed with their testosterone. Therefore, the disease gets controlled.

Traditionally, all patients, the longer they live suppressed from testosterone, the more likely for them to develop resistance to that approach. And traditionally what we have done when that happens is you talk about chemotherapy. You talk about some of the novel oral agents that are able to inhibit signals within prostate cancer cells that allow growth or signals or hormones in our body that we make specifically in the renal glands. With agents such as abiraterone acetate, there are agents capable of suppressing testosterone and production of hormones, then can also activate the signaling within prostate cancer growth. So we now divide patients into 2 main groups when they walk in the office with metastatic disease, what we'll call high volume and low volume. And that definition has been actually processed through the American data called charter data. Patients with high volume disease, specifically speaking, visceral metastases, which is uncommon in prostate cancer—that means lung disease or liver disease—or men with more than 4 metastases in bone, one of which has to be outside the spine and/or the pelvic region, receive hormones and chemotherapy. And clearly, adding docetaxel-based chemotherapy to these men drastically improves their outcome.

The French last year in 2017 presented the data of a trial called LATITUDE, which is a trial that looked at the utilization of oral therapy up front in combination with testosterone suppression. In this case, they used abiraterone acetate. And that trial also specifically was aimed for patients with metastatic disease with high volume features. Although, their definition for high volume disease was a bit different than the American definition, that didn't include visceral disease and the presence of bone metastases, but they did include a Gleason score of 8, 9, and 10, which reflects the biology of the tumors of these patients. And in that trial also it was demonstrated that patients who received the combination of abiraterone acetate and suppression of testosterone have a drastic improvement in outcome. We often times tell our patients that with ADT or hormonal suppression and abiraterone we can decrease their risk of dying from prostate cancer by almost 40%. With the LATITUDE and the charter data from America, we now have a standard of care of either using chemotherapy and/or abiraterone for this patient population, but we didn't have a good sense as to what to do for patients with low volume disease.

Throughout this time, the British also helped us a little bit with supporting the role of chemotherapy in our patients. The British did a trial called STAMPEDE. It's a very complex trial statistically speaking, but it's a trial that basically takes a significant number of patients with metastatic disease, and basically, you have a backbone of a treatment, in this case, suppression of testosterone or androgen deprivation therapy, and you add newer treatments over time. And it allows you the flexibility of removing treatments that are not performing or adding new treatments that are becoming part of what we use for our patients. This trial actually demonstrated a couple of years ago that the addition of docetaxel-based chemotherapy for patients with metastatic disease made people live longer—specifically, reducing the risk of mortality from their disease—and therefore, solidified the role of docetaxel similar to what we did in the American data. They also included an arm that included abiraterone, and that data also presented last year demonstrated significant survival improvement for those patients with metastatic disease.

So now the biggest question was, what do you offer patients with low volume metastases? So their data didn't actually stratify patients by volume of disease, and this is what actually was presented at ESMO this year. And I think the nutshell of this is quite simple. Patients with low-volume disease and/or high volume disease—whether you use the French definition or the American definition—regardless of volume the addition of abiraterone to patients with metastatic disease drastically improves outcome and reduces the relative risk of mortality when you do all therapy. So the standard of care for low volume patients now is suppressing testosterone and adding abiraterone acetate. Perhaps, what is more interesting of this data is they also had an arm within their trial looking at the addition of radiation therapy to a primary tumor for those men with metastatic disease who did not have a primary tumor treated—meaning, with radiation upfront or with surgery—and they walk in the office with metastatic disease. And they randomized those patients to the standard of care at the time, ADT, suppression of testosterone, and docetaxel, or the combination plus radiation therapy to the prostate tumor.

And what we saw in that data, there was not a survival improvement when you take all comers. Meaning, the high and low volume patients. However, when you stratify by volume of disease—the low volume disease against high volume disease—it was clear then there is a significant survival improvement for those men with metastatic disease, with low volume disease, who went on to receive ADP, meaning suppression of testosterone, the addition of docetaxel-based chemotherapy, and radiation therapy to the prostate gland. There was almost a 20% difference at 3 years in survival with the hazard ratio, which is the risk reduction of mortality, of what we call 0.68, which is what we tell patients around almost a 30%, 32% risk reduction mortality when we get radiation therapy to a primary tumor.

So what that does for our practice is that now if we see someone with low volume metastatic prostate cancer with their primary in place, the standard of care has become suppression of testosterone, the addition of abiraterone acetate, and primary radiation to the prostate tumor. Period. For high volume patients, I would argue the standard of care remains either suppression of testosterone, plus docetaxel-based chemotherapy or suppression of testosterone plus abiraterone. And I think most of us in practice are simply using the combination of oral therapy plus suppression of testosterone.

Lastly, I know a very interesting and provocative trial is the trial that is called ERA 233 that looks at the combination of this particular agent, abiraterone acetate, and a radiopharmaceutical agent, also approved in men with advanced castration-resistant prostate cancer. Meaning, men who become resistant to a lack of testosterone and go on to develop progressive disease in the bones. So the rationale behind this combination was that both agents are life-prolonging agents. And since abiraterone can be used in the pre-chemotherapy space in that setting and Radium-223 as a radionuclide can also be used in that particular patient population, we thought that maybe combining a novel oral hormonal approach against a radionuclide-based approach could actually lead to a better improvement in outcome for our castration-resistant prostate cancer patients. So this trial looked at over 800 patients with castration-resistant disease who have never seen chemotherapy and randomized them to receive either the combination of abiraterone plus Radium-223 against abiraterone and a matching placebo.

And the primary end point of this trial was, again, looking at survival along with a reduction in skeletal symptomatic events, which is how likely it is for you as a patient to develop symptoms from bony metastases, which is the most common site of metastases in men with prostate cancer. It specifically relates to the need for radiation therapy for pain control. Developing a fracture then requires orthopedic surgery, or developing a tumor in the spine that is pushing the spinal canal, possibly leading to neurologic symptoms. That was the primary end point of the trial. What we learned from this trial is that there was not really a drastic difference in outcome. Meaning, in the ability to delay the progression of disease. There was no difference in the survival between the 2 groups. Meaning, adding Radium-223 didn't improve outcome. What we did learn is that the combination of abiraterone and Radium-223, unfortunately, does increase the risk of this patient population for developing fractures. Specifically, either pathologic, which are fractures in sites where you have bony metastases or complications from areas of bony disease leading to a bone fracture.

So that was a big issue because some clinicians are using the combination of abi and Radium-223, and since this trial I think most of now refrain from using this combination. I think it's important for our physicians to understand that this trial did not test the timing of using Radium-223 in castration-resistant disease. It only was aimed to test the combination of both agents. So I think Radium-223 remains a life-prolonging agent that should be offered to our patients with castration-resistant disease, to specifically the patient population for which this agent has been labeled for, but the combination with an oral agent such as abiraterone should actually not be used at this point. This trial and the results of this study changed the label of Radium-223 in the United States and also in the European region, and I think that it's fair to say that most of us now refrain from using the combination with this oral agent. Whether or not this means that you can now combine Radium-223 with another oral agent, such as an AR inhibitor, remains to be seen. But clearly, with the significant increase in pathological fractures, almost a 16% difference for all patients in the combination arm, I think most of us would be concerned as to seeing patients developing complications from the combination. I don't think we really know the biology behind why this happened, but I think it's fair to say that the data is confident enough for us not to use in clinical practice.

So just to summarize, I think the standard of care for prostate cancer now for low volume and high volume disease is using suppression of testosterone and the oral agent abiraterone acetate. For those patients with low volume disease who have their primary tumor in place, radiation therapy to the primary tumor is now the standard of care. The timing remains debatable. So I think most of us will treat patients with systemic therapy, and down the road at some given time we probably will include radiation oncologist to offer radiation therapy. And secondly, the use of the combination of Radium-223 and abiraterone acetate is not now something that one can support with the data from this new trial looking at the combination of those 2 agents. Brian, I don't know if you have any comments or thoughts?

Dr. Rini: Sure. Yeah, I mean, as you can tell there's a lot going in prostate cancer as well. I think maybe just to broaden it, 1 of the areas that we're all thinking about is control of the primary tumor in patients whose disease has already spread. And so Dr. Garcia mentioned the data with radiating the primary tumor in a subset of patients, especially in patients with low volume, sometimes called oligometastatic disease. There are studies that are ongoing that are looking at that. Can we treat those patients more aggressively by either radiating or surgically removing their primary, surgically removing lymph nodes, even radiating metastatic site? Hopefully, the window for cure for some prostate cancer patients has expanded to include some of those low volume patients. But I think there's a lot of work to be done because I think there are patients who may not benefit from that, and I think some of these ongoing trials will help to define that. But that's a totally different concept than we had thought about for advanced prostate cancer really. Certainly, in our time that we've been doing this.

So I'd like to thank Dr. Garcia for that excellent summary. Thank you for tuning into this podcast. As you can tell, in GU cancers—and we've really just given you a small slice of what went on at one meeting—but there's a lot of important studies going on. A lot of important data that's coming out of large phase III trials that are changing the standard of care and changing it for the better as we continue to move forward in clinical research. Thank you again for your attention.

Dr. Garcia: Thank you, Brian. Thanks for the opportunity.

ASCO: Thank you, Dr. Rini and Dr. Garcia. Learn more about genitourinary cancers at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

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ASCO President Dr. Monica Bertagnolli has chosen "Caring for every patient. Learning from every patient," as her presidential theme. Putting actions to words, from 2018 to 2019, she is hosting a series of ASCO Presidential Community Town Halls with local groups across the United States to hear from patients, providers, and the general public about real-world barriers to quality cancer care and to talk about ways to provide the best care to every person diagnosed with cancer.

In today's podcast, Dr. Colin Weekes and the Reverend Joel Guillemette discuss the recent town hall event they hosted at the Sudbury United Methodist Church in Sudbury, Massachusetts on September 10. They discuss the most important issues in cancer care faced by members of this community, and ways that these kind of community events can support people with cancer and address these issues.

Dr. Weekes is director of Medical Oncology Research for Pancreatic Cancer at Massachusetts General Hospital. Pastor Joel is the Senior Pastor at the Sudbury United Methodist Church.

ASCO would like to thank Dr. Weekes and Pastor Joel for discussing this topic.

Dr. Weekes: Hi, Pastor Joel. I am Colin Weekes, one of the medical oncologists at Mass General Hospital and a member of ASCO. Would you take this moment to introduce yourself, sir?

Pastor Joel Guillemette: I'm Joel Guillemette. I'm the United Methodist pastor in Sudbury, Massachusetts.

Dr. Weekes: And I'd like to thank you for agreeing to participate in this podcast and really thank you for allowing us, ASCO, to come to your church and do what we've called the Cancer 101 Town Hall meeting at your church. And I was wondering if you could just take a little bit of time to talk about what you thought the impact of that event was, and why you thought that was important for us to come and talk to your parishioners?

Pastor Joel Guillemette: Well, the way I remember how the meeting began, Colin, you had a session in Dorchester, Massachusetts, with the Greenwood Memorial UMC, our sister church. And they were very excited about what happened in their conversation with you and recommended to us that we do something like that here in Sudbury, which is what? 20, 25 miles away. So our Health Ministries team had worked on an invitation to you and to the community. We were gratified by the number of people who came from our own congregation. We didn't see anybody that we would have identified as somebody from the wider community, but it was a good opportunity to talk, I think, about what the expectations of a group of people in an affluent suburb of Boston might be thinking when they hear a cancer diagnosis and begin to process all of that with you, and Dr. Bertagnolli who was also quite helpful in terms of representing some of the dos and don'ts of oncological practice here in the Boston area.

Dr. Weekes: From our perspective, I thought it was really exciting to be able to engage the community and start to talk about cancer from the perspective of the patient, which is something that I don't often get to do, given that most of the time my interaction with patients is in a clinic space. We're talking about sort of treatment and how do we proceed with the issue at hand. So for me, it was really interesting to just sort of hear the perspective of the patients and things that maybe we could do a little bit better in terms of communication, and trying to help patients organize their thoughts around how to manage such a problem.

Pastor Joel Guillemette: What did you hear?

Dr. Weekes: One of the conversations that I thought was really interesting was this idea of sort of how to not take away hope by the language that we use and the issues that we do or don't talk about. So I take care of patients with pancreas cancer, so unfortunately most of those patients will succumb to their disease. And so one of the questions that I posed to the audience was, "Should we be discussing that particular issue at the beginning of our interaction with patients with the context of trying to help the patients form goals around their care and sort of what they want to accomplish with their care and help to make decisions?" And I think we got sort of a variety of feedback in terms of how to approach that question.

And so some of the parishioners said, "Look, our doctor's always been very, very positive. We've never really discussed issues of death and dying. My particular loved one has lived a long time. I don't think we need to be discussing that." The converse was, another patient in the room said, "Now, look, I need to know what the situation is so I can plan. And once I know what the situation is, then I'm going to plan appropriately. And so in my case, I very much want to know what the situation was that I was facing." Now, I'm curious, as a minister who helps support these patients and their families, I think that's just a very challenging position to be in. And so I'm just curious. How do you approach that situation, and what are the things that you focus on as you're trying to help patients go through this process?

Pastor Joel Guillemette: Well, there's a lot in that question [laughter]. I think it is challenging. On the one hand, there's a teaching role in ministry where I think the expectation in the congregation is that clergy are going to teach us in the course of our being together what our faith has in terms of resources for the trials and challenges of life. And so you want to believe that what you've been teaching in the pulpit, in the classroom, will actually show up when cancer is the diagnosis. On the other hand, it sure didn't feel to me during our town meeting that that was happening. I mean, you spoke about never take away hope. I would have liked to have heard something like, "Well, I always have hope, one way or another, because I'm a Christian." And hope is a given because God is in my life, and whatever happens to me I'm being held up by God.

So that's not so much what I heard, and so there was this part of me as an ordained minister, as somebody who walks with people through cancer care, that was disappointed. On the other hand, I know from my training in chaplaincy-type skills that it's not my job to impose my solution on the patient, in terms of what he or she needs to believe to be well in the situation. It's my job to help them find whatever resources they can find in their own personal belief system, whatever that might be. And for most American Christians, that's going to be an amalgam of many things, but then to walk with them and to continue asking them, "Well, what resources do you find in what you believe, and is that working for you?"

Dr. Weekes: Right. Right. I guess one question I have for you is, how do you manage this issue of mortality? Because at the end of the day, cancer, the big C word, ultimately we're dealing with mortality. And how do you approach helping your parishioners, the family members, the patients sort of walk through that process? And maybe sometimes, even if there's a difference of opinion about how to get there, how do you manage that?

Pastor Joel Guillemette: Well, I want to know-- because it's really client-centered care, from my point of view, my responsibility is to ask the person for whom I'm caring, "What do you need, and how can I help you get that?" I was having a conversation some time ago with a cancer patient who's just very anxious about her diagnosis, and we began to talk about some ways to get at that anxiety. And the thing that seemed to have the most promise for her was that maybe she could learn some meditation kinds of techniques, some very deliberate breathing, what Christians called breath prayer. And to find in that some ways to relax even just with the treatments, the chemotherapy, and just going and being—and I'm not even sure what the word that I'm looking for is. Infused?

Dr. Weekes: Yeah, chemotherapy infused. Yeah, yeah.

Pastor Joel Guillemette: Infused. Just being infused was a terribly frightening experience for her. So I taught her breath prayer. We practiced. And next time I see her I want to know how that worked, and we'll go from there. But others are farther along. They know that death is coming. We might want to talk about, "What are your spiritual values that you want to pass on to your family members in a kind of a will? And do you want to write that down? Do you want to create a document, a letter to your family saying, 'Here's what I have believed and what my life has been about, and I'm bequeathing that to you'?" So those are powerful moments that can happen when people choose to be mindful about what's happening to them and rather than to be in denial about what's happening.

Dr. Weekes: Do you ever find a situation where maybe the patient understands that things are not going the way that we would all hope and that maybe they will succumb to the disease soon?

Pastor Joel Guillemette: Yeah.

Dr. Weekes: And the family is maybe not quite there. Yeah. And so to some degree sometimes that can potentially cause some difference of opinion within a family. How do you help patients and their families manage that situation?

Pastor Joel Guillemette: Yeah. That's a powerful question because it happens more than one might think. I think cancer patients understand that their family wants them to fight, then expects that they will put all of the strength they have into a fight against cancer, which most patients who are facing terrible cancer recognize it's a fight they're not going to win. So they're being set up for a battle that is almost always going to disappoint somebody. And so sometimes with a clergy, caregiver, or chaplain, I think cancer patients find that that's the one person with whom they can be totally honest.

Dr. Weekes: Mm-hmm.

Pastor Joel Guillemette: That people can say to me whatever they need to say. I think it's really valuable. I've been in hospital rooms when the family is there, and there was this big talk about how we're going to fight this, we're all in it together, and then finally the family members say, "Well, the pastor is here. I'm going to leave you alone." And out the door they go. They go home. They go to the cafeteria in the hospital, whatever. And then the patient says to me, "Now I can tell you how tired I am of fighting. I want to put my strength into something else. I only have a little time. And I would rather be working on this part of the relationship with my family rather than on a fight that I can't win."

Dr. Weekes: Wow. That's a powerful revelation.

Pastor Joel Guillemette: Yeah, yeah, yeah. Yeah. I mean, I was surprised at the town meeting, Colin, that there was so much unanimity around just wanting to deny that death is even in the room. For me that was sort of a revelation of how powerful Gnosticism is in America. If I can believe it, I can get it.

Dr. Weekes: Well, I mean, it's also the power to want to live which I think is—

Pastor Joel Guillemette: Do you think that's what it is? Yeah. I don't know.

Dr. Weekes: I mean, I think it could be a little bit of both, but I do find that it's very interesting particularly now that we've got our new therapies, some of which are targeted on different molecular abnormalities. Now with also our ability to sort of harness the immune system to treat cancer. I think it's a challenging conversation because there are times when, as a practitioner, you would say, "Okay, well, this patient is moving towards the end." And then you find that they have this molecular abnormality. You might be able to treat them for that, and then things turn around significantly. So I think the good thing about our new cancer care treatments is that we really can impact a wider breadth of patients in a substantial way. I think from the perspective of things that we're talking about now, it becomes a little bit challenging in terms of how to guide patients along that path. Now, sometimes we'll know the information about the molecular characterization much earlier in the disease process because we're doing that more commonly sort of upfront than how in the past maybe you would have done it sort of towards the end of the cancer treatment paradigm. So I think it is kind of challenging to sort of balance, I would say, this perspective of potentially the cancer winning and the patient succumbing to that cancer versus helping the patient realize that maybe there are other highly effective treatments if you have the right sort of molecular characterization, and trying to balance how to keep those two things [crosstalk].

Pastor Joel Guillemette: I agree that people I talk to as a pastor put a lot of hope in therapies that are not yet known. "Will there be a discovery in time for me?" That's something I hear a lot. But I'm thinking largely of the cancers for which we don't yet have that therapy, and that the reality is that death is coming. And yet still we want to have a positive outlook because there's a sense that—I feel like people are saying, "If you can envision it, you will have it." You know?

Dr. Weekes: Mm-hmm.

Pastor Joel Guillemette: And I also wonder—there's a segue in this observation that I think is important to include in our conversation today. I also wonder if that's part of living in a community where visioning has very often gotten what we want. I mean, this is an affluent community, people here, and not that people inherited their money by and large. Folks in this congregation, more than half of them, were the first generation in their family to go to college, so they've done well. And a lot of what the American dream is all about has been theirs from hard work and perseverance and a positive outlook. Right?

Dr. Weekes: Absolutely. Absolutely.

Pastor Joel Guillemette: And yet one of the things we talked about at the Cancer 101 workshop that you led is the disparity in cancer care zip code by zip code, and how in a community like ours the possibility for a more positive outcome is better than in communities where economic challenge is more prevalent. And yet our congregation has always said that we want to be on the side of God's justice and a more equal sharing of benefits and blessings. But that's not happening, and I wonder if it happens or not. I wonder how much our grasping after those privileges in communities like mine might keep that away from other communities.

Dr. Weekes: That's a very good question. I think this is a huge societal issue, right?

Pastor Joel Guillemette: Yeah.

Dr. Weekes: And problem in terms of how do we best manage our resources particularly when the resources are not infinite?

Pastor Joel Guillemette: Yeah. You didn't use the F word there, finite.

Dr. Weekes: Yes.

Pastor Joel Guillemette: The resources are finite. And so I think, to put my clergy hat back on, to be looking at the ultimate diagnosis, the diagnosis that none of us wants to hear, is an opportunity to put our focus back on the only one whose resources are infinite, you know?

Dr. Weekes: Yeah.

Pastor Joel Guillemette: And if we're people of faith, to find there the connection that will see us through to whatever grandeur of life might hold beyond this life.

Dr. Weekes: Well, I think that I've definitely been informed and sort of thinking about this from a different perspective. And I think some of the issues that you brought up are extreme food for thought for the community at large. And as a person who takes care of these patients, I think what struck me the most is the conversation where you sort of talk about the difference of opinion in terms of the patient's mortality, the patient relative to their family because I think, as a clinical investigator, I'm always thinking about sort of how can we treat patients better, how can we get more new treatments, and so forth. And sometimes thinking about the fact that patients may make their decisions based upon what they perceive others want for them versus what they truly want. I think the question for me is now how do I navigate that and help patients? How to even recognize that and then help patients through that process?

Pastor Joel Guillemette: And I have to say, hearing you talk about the cutting-edge treatments for cancer that, I mean, your face just lit up when you began to describe some of the new possibilities that science is making possible. That was encouraging for me. I need to hear that the door isn't always closed, and that maybe there are possibilities for looking beyond that we haven't had before. As we do that, I want to be able to share those possibilities in all of the zip codes of our community and not just some.

Dr. Weekes: Yeah. Well, Pastor Joel, I'd like to thank you for your time. This has been an amazing conversation.

Pastor Joel Guillemette: Thank you, Dr. Weekes.

Dr. Weekes: And I look forward to continuing the conversation over time.

Pastor Joel Guillemette: Thank you.

Dr. Weekes: All right.

ASCO: Thank you, Dr. Weekes and Pastor Joel. Learn more about past and upcoming ASCO Presidential Community Town Halls at www.cancer.net/townhall. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors that care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so data described here may change as research progresses.

In today's podcast, Suzanne Dixon and Julie Lanford discuss nutrition during and after treatment for colorectal cancer, including ways to manage side effects and guidelines for eating with a colostomy.

Suzanne Dixon is a registered dietitian and epidemiologist in Portland, Oregon. Julie Lanford is a registered dietitian in Winston-Salem, North Carolina.

ASCO would like to thank Ms. Dixon and Ms. Lanford for discussing this topic.

Suzanne Dixon: Hi. I'm Suzanne Dixon and I'm an epidemiologist and a registered dietitian, and I have a really long history of working in cancer care and I'm really passionate about making sure that people get good information that's based on facts and not fear. And I'm here with my friend and colleague, Julie Lanford.

Julie Lanford: Hey, everyone. I'm Julie and I am also a registered dietitian. I've been an RD for about 13 years, and almost all of that time has been spent helping people facing cancer. I also have a master's in Public Health, and I'm a board-certified specialist on oncology nutrition.

Suzanne Dixon: Well, thanks, Julie. I wanted to say thanks to ASCO, from both Julie and I. We're really excited to be here to discuss this topic of nutrition for people who are going through colorectal cancer treatment and also for colorectal cancer survivors who may be finished with treatment. So those are the topics we're going to tackle, and talking about how to help people eat well and get the nutrition they need to get through treatment. So I'll get started by talking a little bit of a brief overview about why good nutrition is so important for people with colorectal cancer who are going through treatment or perhaps after treatment. We know that cancer treatment, for a number of different types of cancer, but certainly, for a cancer like colorectal cancer that affects the digestive tract, that can diminish a person's ability to eat well. And there are other symptoms that might pop up that can even affect how the body digests food and uses nutrients.

And we worry about something in the nutrition community called unintentional weight loss. In other words, losing weight without trying. And this is really different from when someone diets to lose weight intentionally. And unlike weight loss by choice, unintentional weight loss, or losing weight without trying, during colorectal cancer treatment can be harmful to your health. And I'm sure, Julie, you've probably heard this, too. And I've spoken with lots of colleagues who have worked with patients who want to put a positive spin on cancer-associated weight loss. Maybe they've been told they should lose weight by their doctor in the past for some other health issue, and they might even say something along the lines of, "Oh. Well, it's terrible I have cancer, but at least I'll lose a few pounds." And I think that really comes from the fact that a lot of the general public is dieting or trying to lose weight at any 1 time. And so a lot of people think any weight loss is good weight loss, and that includes even during cancer treatment. But unfortunately, that is not true. And what we do know is true is that, if you lose weight without trying during cancer treatment, meaning you're taking in less calories and protein than your body needs in order to maintain your current weight, it can make your treatment a little bit harder and sometimes even a little bit less effective. So you might think, "Okay. What's going on here? Why would that be the case?"

And what happens is, with cancer, we know that the body doesn't necessarily respond to weight loss in a healthy way that it might do if you were, say, just dieting on any given day. And that's because stress of the treatment itself and stress of the cancer, that's very stressful on your body, can actually lead to the body not using fat for fuel. And so this is something that a lot of people don't realize. They might think, "Well, I have excess body fat, I'll just lose that weight. It'll be fine." But we know that the fact that the body can fail to use fat for fuel can be true even in people who are carrying excess body fat. And so I think it's really important for people to take away from this that, even if you have "extra body weight", it doesn't protect you as you're going through colorectal cancer treatment from the negative effects of unintentional weight loss. And that's because if you're not burning that fat for fuel, then that means you're burning lean tissue. And that's the healthy stuff, which is made up of muscle, bone, organs, red blood cells, white blood cells, platelets, other immune cells, all kinds of tissues. Those all are part of what we call lean tissue.

And that explains why losing weight, if you're not trying to lose weight, during cancer treatment can be so harmful. For sure, you're going to feel a little bit weak and fatigued if you lose that muscle mass, but those very cells and tissues, that lean tissue that I mentioned? The red and white blood cells and all the other healthy tissues that you need to keep your immunity and your body strong through treatment can be depleted. And so this is where we worry about that unintentional weight loss maybe leading to more severe side effects from the treatment. And sometimes your physician might need to reduce the doses of your treatment or schedule breaks in your therapy, which makes recovery harder and makes it hard to reach your treatment goals.

So that's kind of the baseline that we start from and lays the groundwork for why nutrition is such an important component of your care and why it's so important to make sure that that's something you think about as you're going through colorectal cancer treatment and as you're recovering even after treatment. So Julie, I'm going to turn it over to you for a minute here. And I wanted to hear a little bit about, what have you seen when you're working with patients in terms of symptoms that you feel are challenging and make eating difficult?

Julie Lanford: Yeah. So it's definitely true, us oncology dietitians, we get very nervous when people lose weight, and it's not something that we want to necessarily see, especially during treatment. Every person is different. Their type of cancer, their type of treatment, how they tolerate it are all going to be different. The symptoms they may have during treatment can change with time, and so I actually find it helpful to start just by helping patients understand what the role of nutrition is during treatment. Since it's nota treatment for cancer, but it helps to support the healthy cells as much as possible. Treatment targets the tumor and then your nutrition plan helps to make sure that your body is well-nourished. So while we're looking at that, each person who's coming in, we're going to have to assess, "What are the challenges that they're facing individually?" and try to develop a plan based on that.

Suzanne Dixon: Yeah, that's an excellent point, Julie, just the idea that everybody's different. And I think that's really important for anybody going through colorectal cancer therapy or any other type of cancers, that you might hear some ideas or things that people suggest that you do to help with your nutrition during treatment. And it's good to keep in mind exactly what you said about everybody's different and that we can't assume that what might be right for one person is right for another. So knowing that, say someone is coming in for the first time and they've received a colon or colorectal cancer diagnosis, and maybe they're getting started in treatment. What do you do when you first meet with them?

Julie Lanford: Yeah. So once somebody comes in—oftentimes they're referred by their medical care team, and there's already an issue identified, but a lot of times I like to sort of start at the beginning and try to compare what their usual intake and their usual weight is to what they're currently looking at. So maybe somebody has lost weight, but they didn't realize it because it's possible that they lost a lot of weight before the cancer. Sometimes that's what's actually brings somebody into the doctor is that they say, "I'm losing weight and I'm not trying to," and then that's when they start looking at what the problems are. So rather than thinking, necessarily, just about, "Well, how much weight have you lost since treatment?" we want to look at, "How much weight have you lost over time from what is usual for you?" So we start with that, and then also looking at, "What are they able to eat? Are they able to eat a normal diet they usually eat? Are they not able to eat anything at all? Or are they having to sort of change the types of foods that they're eating?" And then we try to identify what kinds of symptoms might be causing their eating challenges, and that really is why you want to work 1-on-1 with an oncology dietitian because then you can start troubleshooting based specifically on what's going on.

Suzanne Dixon: Yeah, that's a great point, just making sure that people understand that it's both about if they've lost weight in response to treatment but even coming into treatment. I think a lot of people do come in and they don't think about the fact that maybe they've lost 10, 20, 30 pounds even before they were diagnosed. So when someone walks into your office, what are some of the common side effects that you seem to find in those colorectal patients?

Julie Lanford: So when I'm working with people, a lot of times the 2 top things that a lot of people are facing challenges with are not having much of an appetite and/or feeling tired or fatigued to the point where they either don't have the energy to prepare foods or they just don't feel like eating because they're so tired. And so those are pretty common. What I usually tell people is that actually, to help address both of those issues, we usually suggest eating five or six small meals a day in order to get nutrition without getting tired out by trying to eat a huge meal. A lot of people do feel overwhelmed by a large meal, but if they can eat small amounts throughout the day on a regular basis, that will still give them the calories their body needs. Also to keep high-calorie, high-protein snacks on hand is something that is always helpful. So having things like nuts, avocados, fruit, some kind of granola bar that's easy to eat, just something that's around all the time, that's easy to grab, so that you don't really have an excuse to not have something to eat. Some people will keep nutrition supplement drinks like Boost or Ensure in case they don't feel like having a meal, but they are willing to kind of take calories by liquid.

And then when it comes to fatigue, what I tell people is try to rest when you're the most tired. And then when you're less tired, use that time to be physically active because physical activity has actually been proven to help increase energy, which sounds a little bit crazy, but that's how it works. Same thing with fatigue is to have meals and snacks available to you and making sure that you're eating several times a day because your body won't be able to have the energy it needs if you're not eating. So both of those things are kind of similar in their strategies for getting enough intake. So I was curious, Suzanne, though, what are some of the challenges and tips that you share with your patients about side effects?

Suzanne Dixon: So as you said, everybody's individual, and I agree. I do see people with the poor appetite and the fatigue that you mentioned. But I've also seen a lot of patients over the years who have taste changes and mouth sores, which sometimes go together and sometimes don't. Sometimes you can have one or the other, or both at the same time, which can be a challenge. And I completely agree with your ideas around small, frequent meals and snacks, and kind of, as you said, more of what we call eating by the clock. Don't wait for a meal time per se because that appetite might never come. And especially if things don't taste right, or your mouth is sore, and that you have a lack of appetite, you're definitely not going to want to kind of let time go by and then think, "Oh, I need to eat lunch." Well, lunch might be too big, so you should be probably snacking throughout the whole morning. So I also encourage people to keep those high-protein, high-calorie foods readily available in the fridge, or on hand, as you said. Maybe something portable if they're leaving the house, not to leave without food, to keep some of those things with them in their purse or their bag. And I, at home, encourage things like eggs, chicken, fish, beans, nuts, lean beef, high-calorie liquids, smoothies, things like that. You could throw some fruit juice in a container, throw in a scoop of protein powder, shake it up, and drink it. That's the easiest kind of protein drink. Or you could make a straight-up smoothie where you throw some fruit, maybe some banana, and some other types of fruits that you might want to throw in there, or some frozen fruit like cherries, or those sorts of things. Peaches, maybe. And you blenderize them up with some juice or milk or whatever liquid that you might like. Throw in a protein powder, just a basic whey protein. Anything like that would be great. And just blenderize that all up, and you can kind of sip on it all day.

I think for mouth sores, sometimes people feel challenged because it doesn't feel good to eat if your mouth hurts. And so I always encourage people to work with their medical team to make sure that their pain and their mouth sores are medically-addressed appropriately. And I encourage people to realize that just because a particular medication works for one patient doesn't mean it's going to work equally as well for you. And there are lots of options, so I always say, "If your mouth hurts so badly that you're just absolutely unable to eat, call your doctor or your nurse right away." There's all kinds of different pain medications available. Pills, patches, suspensions. There's oral mouth rinses that people can use to kind of numb the mouth a little bit, and you might want to time those so that you do that rinse, and then you eat when that pain control is at its absolute best.

And we want to make sure that patients understand that, that if that pain control isn't good, communication is key. They need to let their doctor or nurse know because, typically, those folks are going to start with some standard medications for things like pain control or sore mouth. And if you don't tell them that, you're not getting good pain control, they're going to not know that and they're just going to assume they're fine. So I really do encourage people to keep up that dialogue with their physician and nurse, and to use some common sense tips about sore mouth type problems such as bland, soft, room-temperature foods, usually not hot or extremely cold. Maybe oatmeal, yogurt, casseroles with a lot of moisture in them, shredded chicken in broth, pasta with olive oil. The noodles can kind of slide past the mouth sores, that sort of thing. Applesauce, smoothies. And I always encourage, for the mouth sore part, any food that doesn't have seeds. You want to avoid the berries and the fruits with lots of seeds because those can get stuck in your mouth and irritate the mucous membranes a little bit. So you want to make sure that you kind of stick with those smooth fruits like the bananas, the peaches, those kinds of things, in your smoothie.

And for the temperatures—I said room temp is good, but of course anything that requires cooking for food safety, so that would be things like the casseroles and the things with the meat and other types of foods in them that need to be cooked to be consumed, be sure to cook them thoroughly according to directions, and then you can let them cool down to room temp to avoid irritating your mouth. And of course, avoiding hard, crunchy things. If your taste is off, you can certainly do things like granola bars, and nuts, and those sorts of things. But if your mouth sores are really problematic, then you want to avoid those particular foods because they're crunchy, they're kind of poke-y, and they can make your mouth a little bit worse.

There's some really unique taste changes that can happen for folks who are going through treatment. For example, a metallic taste in the mouth. Sometimes just using plastic utensils can diminish that a little bit. You don't want to stick a metal fork in your mouth if it already tastes a little bit metallic. Marinating meats, chicken, fish, lean beef, those kinds of things, in different types of flavors that you might not normally think of. Because those foods can taste kind of metallic in your mouth when you're going through certain types of chemotherapy. So fruit-based sauces, sometimes, something a little sweet on that, will take away that metallic. Some people even put a little jelly or jam on their meat to kind of kill that metallic aftertaste. And I just say experiment. If you are dealing with taste changes and you don't have mouth sores, you can experiment with things that are a little bit more acidic like lemon, or vinegar, lime. Those sorts of things can really pep up the taste and get rid of some of those nasty tastes that might come from the chemotherapy or radiation, those kinds of things. But I always say, don't use those acid foods if you have mouth sores. It's too irritating.

But also look for other tips to keep yourself away from food smells, so staying out of the kitchen when food's prepared so that you don't kind of get that smell and that taste up in your nose and your mouth before you're ready to eat. A lot of people say things are overly sweet, so they might say, "Well, I don't really like a Boost or an Ensure, or one of those kind of liquid supplements. They just taste too sweet." You can take one of those and throw in something a little more tart, like frozen cranberries or a little bit of powdered coffee to one of those chocolate or vanilla types of supplements so that you get more of like a mocha flavor. It's not quite so sweet. So just asking yourself, "Do I feel like salty? Do I feel like sweet?" and just experimenting and trying whatever you feel like eating that day, I think that's really important for people to remember. There's no one right answer for everybody.

And I wanted to turn a little bit and think about more—a little bit lower down in the digestive tract, so GI issues. And these are things I think a lot of people don't want to talk about. Sometimes patients are a little bit embarrassed to admit that their GI tract is doing weird things, things like constipation and diarrhea. That's not usually part of our polite conversation, but what you need to realize is embarrassment is definitely not going to get you the help you need. And the other thing is all of your healthcare providers deal with this type of stuff with their patients every single day, day in and day out, so there's nothing wrong with bringing up changes in your bowel habits, those kinds of things. So Julie, what do you see often if a patient comes in and they kind of hint around that maybe their GI tract isn't functioning quite so well?

Julie Lanford: Yeah. You know, I think that GI issues are really common for people in cancer treatment in general, but especially for patients in colon cancer treatment. Diarrhea can be a significant issue, especially if you're having radiation. But a lot of the chemos, that's certainly a side effect. What I really recommend for people is to pay attention. You may need to track, because you might not realize how many bowel movements you're having a day. And one of the key things with diarrhea is making sure that you stay well-hydrated. So especially if you're on chemo, the last thing you need is to be dehydrated. And you lose a lot of fluids with diarrhea, so making sure that you increase your fluid intake to add any lost fluids back. If they're having constant diarrhea, finding sports drinks or a way to get electrolytes, even things like—Pedialyte is formulated for kids, but some way to get electrolytes back into your system, making sure to communicate with the medical team about that, avoiding caffeine and fizzy drinks. Usually, those can kind of irritate it a little bit more. Making sure to have small meals. I feel like I've already said that [laughter] couple of times so far today, but that really is a strategy that helps. Bland, salty foods, like pretzels, crackers, broths, soups, can help get some of those electrolytes while also replacing fluids. But yeah, Suzanne, what kind of tips do you have?

Suzanne Dixon: Well, you touched on, a little bit, the importance of talking to your medical team. And I mentioned this too, but making sure you start that discussion with your physician if that medication isn't working the way it should. A lot of times, as you said, we expect that folks might suffer from a little bit of diarrhea or maybe a lot of diarrhea, and you may be given some medications to manage that. And again, keeping in mind that kind of what the standard medication is that maybe works for 80% of people with this particular problem, it may not work for you. So I think it's perfectly fine for you to perk up and tell your physician, "I know you gave me this medication for my diarrhea. I'm taking it just like you said, but I still have—" as you said, maybe you track it. "I still have eight watery bowel movements a day." That's not good. We don't want to see that, because it really can make it hard for you to stay well-hydrated, keep your electrolytes normal, and get the nutrition you need. So I think that's really important. And Julie, once that medical management is addressed, what do you do with helping people with their nutrition?

Julie Lanford: Yeah. So hopefully, the medicine will actually kick in and make sure that people are digesting and absorbing nutrients during their treatments, and they can kind of get, at least, to a stable place with the diarrhea. And then what happens is sometimes they get the diarrhea under control and then their body tends to move towards constipation. And so it can be really challenging for people once they figure out, "Oh, I think I have a strategy that works," and then another issue comes up.

So once it comes to constipation, again, being in touch with the medical team is really important, and making sure that if you are having constipation, just like diarrhea, you want to keep track of when your last bowel movement was, what's the consistency, is it painful, and then making sure to communicate and not wait too long. Because once somebody waits a long time, it's hard to get those bowels moving again. So it's really important to just keep that open communication with the medical team.

With constipation, we really want to make sure people are eating food on a regular basis because your GI tract isn't going to work if you're not putting things into it, drinking plenty of fluids, so that's pretty consistent across the board. If it's possible, and you tolerate fiber, getting enough fiber will help. Being physically active. But if the constipation is a result of pain medication, a lot of times, our dietary strategies may or may not be effective, but you really need to be on some medical management for that. Suzanne, what kinds of things do you usually recommend for constipation?

Suzanne Dixon: Well, I agree with what you said about pain-management. Some of those pain medications and anti-nausea medications can contribute to constipation. And sometimes our food recommendations can make a big difference with that, but for other people, they don't make as much of a difference. So if you are prescribed any kind of medication to help manage a side effect, like constipation, you want to make sure that you follow those instructions and do it as directed. And Julie, as you mentioned, I think it's really important to let your physician know that you're having this type of problem and if the medication isn't doing the trick for you because, as you said, once that problem gets really entrenched and you're really kind of backed up, so to speak, and you haven't had a bowel movement in several days, it's challenging to get that fixed. And so we don't want people to struggle to the point where they end up—what we call impaction, meaning they need to work with their physician to maybe have that stool mechanically removed, which nobody wants to go through that. And so we always encourage people, if you haven't had a bowel movement in a couple of days, make sure you let your physician know so they can up your medication or find other ways to control your pain that maybe aren't a medication that cause so much constipation, that sort of thing.

And once that's all taken care of, as far as just using the diet in addition to those medical managements, fluid is really important. You mentioned that maybe sometimes people might take a fiber-containing product, or getting more fiber in their diet. Fiber only works if you get lots of fluids. I always tell patients, "Fluid, fluid, fluid. Get plenty of water or other liquids in your diet so that everything can kind of move through your digestive tract."

And then the other piece is that I think it's helpful to know the different types of fiber in the diet and what they can do for you. So there's soluble and insoluble fiber. And soluble means it's dissolvable in water. It gets sticky or gooey when it gets wet. So oats are a great example of this. If you pour some liquid into your oatmeal, it actually thickens up and gets gooey. And that's soluble fiber. Now, insoluble fiber is just the opposite. It doesn't really absorb much water, and it doesn't really change much when you add a liquid to it. So I always think, "If you dropped a carrot stick or a celery stick into a glass of water, what would happen?" Not much. It just sits there because it's insoluble. It's a really different type of fiber. And so for constipation, we know that a combination of both soluble and insoluble fiber can help quite a bit. And for diarrhea, getting back to that topic, soluble fiber only is kind of where we head for people to go with their intake. So it's kind of interesting that fiber can be used at both ends of the GI spectrum, whether your GI tract is moving too slowly, with constipation, or too rapidly with diarrhea. Just remember soluble fiber only for diarrhea, and a combination of those two for constipation.

And so some places you might a soluble fiber for food—and again, you want some of this for constipation, and only this for diarrhea. Oats in oatmeal, applesauce, lentils, pears, really finely ground flax seeds—not whole, because then it acts a little bit more like an insoluble fiber and it goes through too fast. Barley, really well-cooked barley, or white rice. If you cook it with a lot of extra water and you get this kind of stickiness to it, so you get this real, kind of globby, sticky white rice, that can really slow things down a little bit in the digestive tract.

But insoluble fiber, again, what you're aiming to get some of this in for your constipation—and you would want to avoid this for diarrhea. But if you are going towards managing constipation, you add some insoluble fiber, which has things like whole wheat and wheat bran, rye-based breads or crackers, nuts and seeds, raw or lightly-steamed vegetables, berries. Those seeds that I mentioned earlier with the mouth sores? Those are good for constipation generally. Those berries have a little bit more fiber in them. And when you look at things like beans and peas, a lot of people think of beans as being very fibrous, and they are. They contain both soluble and insoluble fiber. And then in terms of kind of maybe picking a fiber product, like something like a Metamucil, or that sort of a product, you would want to work with your physician because there are some situations that could be worsened by adding in a fiber product. So you want to make sure that you're safe to add that in. If you have an infection or a small bowel obstruction, fiber will make that worse. So we want to make sure that you talk to your doctor before you do any of that stuff on your own.

Julie Lanford: You know, if somebody wants to, or if they're told that they should take a fiber supplement, I think it is important that the medical team actually be specific about what type of fiber to look when you're purchasing a product, because there are some that claim, "You can add it to any liquid and it won't thicken up." But I find that the ones that don't thicken up aren't particularly beneficial, depending on [laughter] which issue you're dealing with. So you may want the gritty fiber supplement if you're trying to deal with constipation. But yeah, you definitely need to pump lots and lots of fluids if you're going to take those fiber supplements.

So I feel like the progression on this since we're talking about all these bowel movements [laughter], is to talk some about colostomies because some people will have parts of their GI tract removed, and then they made have to use a colostomy. So just to explain a little bit about what a colostomy is, so essentially what happens is if somebody has to have surgery to either remove part of their GI tract, in order to eliminate stool from the GI tract, they may have to put in a temporary or a permanent exit for the stool to come out. And so the ostomy is where post-digested food would then exit the body, and then it's into a bag that's then emptied by the person who is having to use that device.

And while it might be temporary for some people, for some people, it's actually permanent, but either way, there are some really great, I think, guidelines for eating after a colostomy. And most people kind of figure out what works for them and what doesn't, but especially in the beginning, as far as food goes, we really want to be cautious with adding something that might cause some discomfort or that the output would be difficult to handle.

So we generally guide people to stay away from things like corn or popcorn, raw vegetables, the skins and peels of fruits and vegetables, because those can sometimes be the most difficult-to-digest pieces. And since part of the GI tract or the colon has been removed, it's extra-hard to digest, and you might not actually digest them at all, and that's why they show up in the bag as output. So we recommend kind of being really cautious with the foods that you start with, avoiding some of the gas-producing foods, broccoli, cauliflower, beans, peas. A lot of people know which foods tend to be more gas-producing. It's not to say that someone with an ostomy can never have those. It's just, especially when you get started and kind of try to figure things out, you want to err on the side of not having them. And then if you do want to add them eventually, you might start by blending or just having a tiny bit of it to test it out and see if it works for you. Suzanne, what do you tell people when it comes to colostomies?

Suzanne Dixon: Yeah, I agree completely with those guidelines. Anything that you think of as kind of tough and fibrous, like all those raw fruits and vegetables, or corn, popcorn, peas, beans, all that sort of stuff, salad—you know, think about lettuce. Popular vegetable these days is either cauliflower or kale. Those are kind of 2 hot vegetables that people are always, "Oh, you need more cauliflower and kale." Those are tough to digest, so I really would encourage people to think about not having those for a while if they're first new to having a colostomy. And as you said, Julie, it doesn't mean you can never have it. If your colostomy's permanent, you can probably work your way up to some of that stuff, but you're going to want to do that slowly.

Another piece of advice I think that most of us don't think about is to chew your food really thoroughly. And this takes a little bit of effort. I can admit myself that sometimes I sort of eat really rapidly and don't chew my food as much as I should. I know a lot of us, we're in a rush. We often just swallow our food without chewing it at all, and it's remarkable that our digestive tract, generally speaking, can handle that just fine, and that's because some of the action of digestion is due to enzymes, but some of it's due to kind of mechanical action called peristalsis, and your GI tracts squeezes and contracts and pushes food through, and that helps break it down, even if you haven't chewed it very well.

However, if you're missing a piece of your GI tract, you're missing a piece of that digestive work that gets done, and so that means if you don't chew food thoroughly, it will show up in your ostomy bag as a piece of food. And I think the best example—and some people might think, "Oh, this is gross. Don't talk about this," but it really is true. Summer season comes. People eat corn on the cob and they joke about that—they look in the toilet after they've gone to the bathroom and there's corn pieces floating in there. That is exactly the type of food we're talking about that can be so difficult for someone with an ostomy. And so we really tell people to limit those things and to chew even the foods that are a little more easily digested.

I can't even stress enough how much we need to chew our food more than we do, and especially if we have a colostomy, because that can go a long way towards breaking it down right there in your mouth and preventing some of those potential blockages of the bag. We don't want that to happen because then you can get leaks and other unpleasant things like that. And the gas-producing foods are good to limit, especially when you first have an ostomy bag, to see how your body responds because, of course, you don't want a lot of gas production. It can blow up the bag, make it harder to manage, so we really do encourage people to kind of go easy on their digestive tract and stick to some of those softer, blander foods, and to chew everything really thoroughly, meats, things like that, chicken, fish, beef. If you're having those kinds of foods, chew those pieces really well, cut them up small, and make sure that you kind of give your digestive tract that little advantage of letting your teeth do some of the work first.

Julie Lanford: Right. I think we sometimes forget that just chewing is the first part of the process of digestion, and so that's why buying things that are blended or pureed ahead of time, or doing that yourself, kind of helps to make sure that, instead of eating peanuts, if you have peanut butter, it's already blended and kind of broken down before you even start to eat it. And so it can be just a little bit extra step to help your body digest it more effectively.

Suzanne Dixon: Right. Yeah, I totally agree. I think we all forget about the fact that a big part of our digestion takes place in our mouth.

So, I wanted to ask you a few questions, Julie, about long-term health. So we've got folks that have gone through treatment, and they're doing well, and they want to kind of transition back to their regular eating pattern. And so what do you do to guide people towards healthy, long-term dietary changes for their best, healthiest, cancer survivorship?

Julie Lanford: Yeah. So especially with colon cancer, I think the challenges are that a lot of times, what we typically recommend for a healthy diet, especially after treatment is over, might not be something that people tolerate right away because of all these digestive issues. So I do just want to encourage those survivors out there who might be having digestive issues that we can tailor a diet to whatever challenges someone's facing. So while the current recommendation is that we want people to eat lots of fruits and vegetables and plant foods, I recognize that sometimes that's not possible. So I usually work with my client individually to figure out, "Well, what is kind of their best choice, given their challenges?" So for some people, they need to eat cooked vegetables. Some people need to always have blended vegetables. And in some cases, this is kind of the one time I might recommend that someone juice as opposed to blend their foods because, if they don't digest it very well, juicing is maybe the best option that they have.

Suzanne Dixon: Yeah, that's a great point. We don't generally, as dietitians, promote a lot of juicing because you lose the fiber and other good components of the food. But of course, if you can't digest fiber, at least you can get those nutrients with some juicing without irritating your digestive tract. That's a great point. So as we're moving to the end here, Julie, do you want to kind of summarize some of the key takeaways?

Julie Lanford: Yeah. What I would say is that since everybody has their own kind of individual issues, that I would just encourage people that you want to remember that your nutrition does matter. You want to stay well-nourished because that's going to improve your body's ability to tolerate and respond to treatment. There are so many dietary tips and tricks out there that you want to, as much as possible, kind of pick the ones that work for you, be in touch with your medical team, ask for a referral to an oncology dietitian, if you need that, and then once treatment is over, really try to work to find a nutrition plan that works for you.

Suzanne Dixon: That's a great point. I like that. One-size-fits-all is not the approach. You definitely want to tailor things for your own needs. So it's really been great talking with you today, Julie, and I hope that a lot of patients can benefit from this information.

Julie Lanford: Yeah, this was really fun.

Suzanne Dixon: Thanks.

ASCO: Thank you, Ms. Dixon and Ms. Lanford. Learn more about colorectal cancer at www.cancer.net/colorectal. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

While most people may think of visiting a doctor to receive medical care, today, technology such as computers and smartphones can connect doctors and patients who are separated physically. This is known as "telemedicine."

In today's podcast, Dr. Ana María López, Dr. Joseph Sirintrapun, Dr. Joseph Greer, and Dr. Karen Edison will discuss their article from the 2018 ASCO Educational Book, "Telemedicine in Cancer Care," including specific methods used in telemedicine, and the ways it helps bring high-quality medical care to people who might not otherwise be able to access this care.

Dr. Lopez is the Vice Chair of Medical Oncology and Chief of Cancer Services at the Sidney Kimmel Cancer Center at Thomas Jefferson University. Dr. Sirintrapun is a pathologist and the Director of Pathology Informatics at the Memorial Sloan Kettering Cancer Center. Dr. Greer is the Clinical Director of Psychology and a research scientist in the Center for Psychiatric Oncology & Behavioral Sciences at the Massachusetts General Hospital Cancer Center. Dr. Karen Edison is the Philip C. Anderson Professor and Chair of the Department of Dermatology at the University of Missouri Health System, the Medical Director of the Missouri Telehealth Network, and the Director of the Center for Health Policy at the University of Missouri.

Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology.

ASCO would like to thank Dr. Lopez, Dr. Sirintrapun, Dr. Greer, and Dr. Edison for discussing this topic.

Dr. Lopez: Hello, welcome. My name is Dr. Ana María López. I'm a medical oncologist at the Sidney Kimmel Cancer Center at Thomas Jefferson University. Today we have a great panel on telemedicine and cancer care. I'm joined by Dr. Joseph Sirintrapun from Memorial Sloan Kettering Cancer Center, Dr. Joseph Greer of Massachusetts General Hospital, and Dr. Karen Edison from the University of Missouri Health System. In this podcast, we will be sharing some key points from our 2018 ASCO Educational Book article, "Telemedicine in Cancer Care."

I'd like to start by giving a quick overview of telemedicine. Telemedicine uses telecommunication technology, like smartphones and computers, to provide clinical care, to really facilitate access to clinical care. These virtual visits can be in real-time, that is, almost like the face-to-face visits, and the patient and the physician use a video connection, which could be an app. But it could also be done by utilizing what's called Store-and-Forward. So when medical reports are transmitted, when images, like radiographs, or sound recordings, which might be from an echo, or a stethoscope, could be transmitted, and these are interpreted at an asynchronous time from the clinical visit.

A combination of these approaches can often be used. And although these have been developed to care for patients at a distance, you can image that this can be very helpful in urban settings as well. Dr. Edison, can you tell us a little more about the history of telemedicine and how it might benefit patients with cancer?

Dr. Edison: Of course, Dr. Lopez. Telemedicine was initially created to assist with the care of astronauts while they were in space. But since devices like smartphones and computers with video capabilities have become so widespread and popular, doctors are now finding that they can use telemedicine to benefit patients who may not be able to otherwise make an in-person visit. Teleoncology, which is the cancer-specific form of telemedicine, was first used to help treat patients with cancer who live in rural areas. Teleoncology became a useful way for them to get care from their cancer team.

Dr. Lopez: Dr. Edison, do you think teleoncology as effective as seeing a cancer doctor in person?

Dr. Edison: Yes, and this has actually been studied. Telemedicine is as effective as in-person care, and both patients and doctors are highly satisfied using telemedicine. It also saves costs.

Dr. Lopez: What do you think these different types of telemedicine applications—you see these mHealth apps and wearables—can they help people with cancer?

Dr. Edison: Using telemedicine technologies like remote monitoring of cancer patients is a way to limit the time that patients with cancer spend in the doctor's office or the hospital so that they can maximize their time closer to home enjoying their lives. With telemedicine a patient can follow up with me on wound care and talk about managing their symptoms without making a trip to the office. I can use telemedicine technologies to monitor my patients' vital signs, like temperature and heart rate. There are also iPad-based group therapy sessions for young adults with cancer, and even a smartphone attachment that can use digital images to assess the cervix after an abnormal screening.

Dr. Lopez, you've done a lot research into using teleoncology for breast cancer care, can you tell us a little about your patients' experiences using these methods?

Dr. Lopez: Sure. You know, teleoncology for breast cancer care, and for different aspects of cancer care, as you were mentioning, can really encompass the full spectrum of care from prevention, survivorship, to palliation.

There are data for the efficacy, for example, of telegenetics to assess hereditary cancer risk. And with the limited access for cancer geneticists in the country, this is really of great value to communities. There are approaches where telemedical services could be "bundled." This could facilitate entry into breast cancer care by coordinating timely scheduling, sometimes even same-day. Telemammography, telepathology for the breast biopsy, and teleoncology consultation to discuss the plan of care, all really to facilitate the patient's care.

At the end-of-life, the opportunity for tele-hospice can facilitate connection to care, timely assessment and intervention, and ease symptom management. A unique application for telemedicine that was pioneered at our institution in Arizona is for virtual rounds, to engage the patient, families, and caregivers in the transitions of cancer care that are critical for patient outcomes. Although most telemedicine approaches serve to bring the patient to the medical team, the concept of virtual rounds serves to bring the family and caregivers to the medical experience and to the discussions that can support care transitions. So as we consider how to care for patients, and to better care for cancer patients, we can also think if there is a technological approach that could make care easier. That might just be a telemedicine solution!

As an example, Dr. Sirintrapun at Memorial Sloan Kettering has used telemedicine to address an important approach in telepathology. Dr. Sirintrapun, can you tell us a little more about this?

Dr. Sirintrapun: Of course, Dr. Lopez. Pathology is the examination of tissue, the mainstay being under a microscope. As a pathologist, I diagnose cancer or determine if the tissue is free of disease. Pathology is constrained historically because of the requirement for the physical presence of someone who is skilled at microscopic examination. There are scenarios where there cannot be enough of these people available to render an accurate microscopic assessment. This absence is particularly true outside the U.S. where there is an ever-expanding shortage of pathologists and where patients are unable to receive a definitive pathologic diagnosis.

I described a specific situation at my institution where there were not enough skilled people at our satellite locations evaluating fine needle aspirations and biopsies for adequacy. This unavailability might have resulted in patients sometimes having to undergo multiple subsequent biopsy procedures or invasive procedures.

Dr. Lopez: Oh, how interesting, that's certainly not the experience we want our patients to have. How has you worked to change this?

Dr. Sirintrapun: In a nutshell, because telemedicine or telepathology can cut out the need for physical transport and manual handling of glass slides and patient information, I created a telepathology framework to overcome the need for physical presence of someone skilled at microscopic evaluation. We've been able to use remotely operated robotic microscopes and microscopes streaming high-definition video to evaluate tissues at other locations and communicate our findings.

Dr. Lopez: That's great! Thank you, Dr. Sirintrapun.

Dr. Greer, what are some other ways that telemedicine can help patients with cancer?

Dr. Greer: Yes, the change from using paper medical records to electronic health records is a big development. The goal is to be able to virtually link a patient's medical record with mHealth tools in their home. For example, this could include a camera equipped with secure software to assess skin changes and rashes associated with chemotherapy or radiation, or computer-based interactive tools to assess symptoms related to cancer care in real time.

Also, many patients in rural areas are not able to enroll in clinical trials. Telemedicine may be used to facilitate access to cancer clinical trials by virtual eligibility assessment, consent, and symptom assessment and management. It evens out the access to the benefits of clinical trials between urban and rural patients.

Dr. Lopez: And what about big data? That's a term that we hear a lot about in the news.

Dr. Greer: Yes, big data is one of those hot terms. Essentially, it means that we can use electronic health records, without any patient-identifying information, to amass a lot of medical information on a lot of people. Then, we can use computer algorithms to find patterns across the population to more effectively diagnose and treat cancer.

Dr. Lopez: Thank you, Dr. Greer. And thank you Dr. Edison and Dr. Sirintrapun. Technology is a tool that may free the doctors to focus on patient care and allow patients to more easily communicate with their medical team. We may see improved coordination of cancer care, lower costs, time savings, early disease detection, and increased access to care, education, and personalized care through telemedicine and teleoncology.

We appreciate your time and sharing your wisdom with us, and we appreciate the time of all the listeners, and look forward to hearing of your experiences as you explore these opportunities. Thank you.

I hope you've enjoyed our podcast. To learn more, please view our article online at ASCO.org/edbook. Thank you.

ASCO: Thank you Dr. Lopez, Dr. Sirintrapun, Dr. Greer, and Dr. Edison. Please visit ASCO.org/edbook to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Many people are aware that quitting smoking or other tobacco use will reduce the risk that someone will develop cancer. In today's podcast, Dr. Noelle LoConte, Dr. Jeffrey Gershenwald, and Dr. Cynthia Thomson will discuss their article from the 2018 ASCO Educational Book, "Lifestyle Modifications and Policy Implications for Primary and Secondary Cancer Prevention: Diet, Exercise, Sun Safety, and Alcohol Reduction," and share tips for other changes people can make to reduce their cancer risk.

Dr. LoConte is a medical oncologist at the University of Wisconsin Carbone Cancer Center and an Associate Professor of Medicine at the University of Wisconsin School of Medicine and Public Health. Dr. Gershenwald is Professor in the Department of Surgical Oncology at The University of Texas, MD Anderson Cancer Center. Dr. Thomson is a Professor and Director of the Canyon Ranch Center for Prevention and Health Promotion in the Mel and Enid Zuckerman College of Public Health at the University of Arizona.

Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology.

ASCO would like to thank Dr. LoConte, Dr. Gershenwald, and Dr. Thomson for discussing this topic.

Dr. LoConte: Hello, my name is Dr. Noelle LoConte from the Carbone Cancer Center. I'm joined today by Dr. Jeffrey Gershenwald, from The University of Texas MD Anderson Cancer Center, and Dr. Cynthia Thomson from the University of Arizona Cancer Center. In this podcast, we will be sharing some key points from our 2018 ASCO Educational Book article titled, "Lifestyle Modifications and Policy Implications for Primary and Secondary Cancer Prevention: Diet, Exercise, Sun Safety, and Alcohol Reduction."

Lifestyle behaviors and their impact on a person's cancer risk have been widely studied by cancer researchers. Experts have found that modifiable behaviors, like diet and exercise, account for between 30 to 50 percent of cancers. And, many reports have found that if Americans followed the cancer prevention recommendations issued by the American Cancer Society, that cancer rates could be reduced by about 17% overall and by up to 60% for some cancers in high-risk groups.

One major driver of cancer risk is obesity. Dr. Thomson, you've done quite a bit of work studying obesity and cancer risk. Can you tell us about what you've learned?

Dr. Thompson: I'd be happy to, Dr. LoConte. Over the past several decades, rates of obesity have risen to epidemic proportions in the United States, and it is likely that this factor has contributed to higher rates of several cancers in America. Experts estimate that obesity increases cancer risk as much as 20% overall and 50% for people under the age of 65. These findings mean that we need to promote life-long weight management as a way to reduce the rates of cancer. For those who are overweight or obese, losing even a small amount of weight has been shown to have health benefits.

Dr. LoConte: What foods should be avoided to reduce cancer risk and maintain a healthy weight?

Dr. Thompson: Avoiding sugary drinks, processed meats like those we find in the deli, red meat, and refined grain products like white bread, can promote weight control and thus help some people to reduce the risk of cancer.

We should try to eat more of a variety of vegetables, fruits, whole grains, and legumes. Ideally, a person would eat at least 2 and half cups of vegetables every day. And of course, alcohol consumption should be reduced or eliminated.

Dr. Gershenwald: What are some other ways people can manage their weight?

Dr. Thompson: Controlling the amount of food you eat is the most important step toward weight loss and weight control. But physical activity is another great way to maintain a healthy weight, Dr. Gershenwald. Adults should engage in at least 150 minutes of moderate-intensity activity or 75 minutes of vigorous activity each week. Children and adolescents should engage in at least 1 hour of moderate or vigorous intensity activity each day, with vigorous intensity activity at least 3 times per week.

A good way to tell what level of activity you're engaging in is the talk test. During a moderate-intensity activity, you should be able to carry on a conversation, but not sing. During a vigorous activity, you should be breathing heavily.

In general, we need to try to limit the amount of time we're sitting, lying down, watching television, or playing on our phones. These sedentary activities can negatively impact our weight and our health.

Dr. LoConte: Dr. Thomson, you mentioned earlier that alcohol consumption should be reduced or eliminated to help with weight loss, and I wanted to talk a little more about that. We know that alcohol negatively affects a person's weight, but we are now learning more and more about how alcohol and cancer are related. Head and neck cancer, breast cancer, squamous cell esophageal cancer, liver cancer, and colorectal cancer have all been linked to alcohol.

Dr. Thomson: Is the cancer risk for alcohol consumption dependent on how many drinks a person has per day?

Dr. LoConte: Although risks are highest with moderate and heavy drinking, there is increased cancer risk even among light drinkers. Studies have shown that if someone only has 1 drink per day, they may be putting themselves at an elevated risk for some types of cancer, like breast cancer. For cancer prevention, it's best not to drink alcohol. The take home point is that the more you drink, and for the longer the period of time, the higher your risk of cancer. As an oncologist, it's important for me to be honest with my patients about the role of alcohol and cancer. This is really hard because we live in a culture where alcohol use is widely accepted as a norm.

Dr. Gershenwald: What kinds of alcohol are associated with cancer risk?

Dr. LoConte: All kinds, Dr. Gershenwald. Wine, beer, and liquor. In any form, alcohol plays a role in carcinogenesis—meaning it helps cancer grow. A drink is considered to be 5 ounces of wine, 1.5 ounces of distilled spirits, or 12 ounces of 5% beer.

Dr. Thomson: Another behavior that is tough to change, but is critical for cancer prevention, is overexposure to ultraviolet, or UV, radiation. Dr. Gershenwald, this happens to be your area of expertise. Can you tell us more about how UV radiation exposure impacts our risk for cancer?

Dr. Gershenwald: I'd be happy to, Dr. Thomson. UV radiation exposure is a major contributor to risk for and cause of most skin cancers, including melanoma, the most lethal. It is somewhat alarming to hear that nearly 95% of all melanomas arising on the skin, as well as deaths from melanoma in the United States, are attributable to UV radiation. When melanoma is caught in its early stages, it is very treatable and most patients have favorable outcomes. But when melanoma is diagnosed at later stages, it can be highly aggressive and difficult treat.

Dr. LoConte: If such a significant fraction of melanomas are related to UV, is there anything people can do to reduce their risk of cancer due by reducing UV radiation exposure?

Dr. Gershenwald: Absolutely. Using broad-spectrum sunscreen with an SPF of at least 30 and wearing protective clothing–including wide-brimmed hats, long-sleeved shirts, and sunglasses as some examples–can help reduce the harmful effects of ultraviolet radiation when you're outside. Try not to be outside between 10 AM and 2 PM when the sun's rays are the strongest, and if you are, try to seek shade.

Sun-protection practices are important for people of all ages, but are especially important for children and teens. Having 5 or more blistering sunburns while young has been estimated to increase a person's risk of melanoma by about 80%. Facilitating the use of sunscreens in our schools is also a great way to promote sun safe behavior at a young age.

Dr. LoConte: What about tanning beds? Are they a safe alternative to the sun?

Dr. Gershenwald: No, they are not safe, Dr. LoConte. Tanning beds emit the same kind of UV radiation as the sun. Avoiding tanning beds is important to reduce the risk of skin cancer. Starting indoor tanning before age 18 increases melanoma risk by 85%, and starting between age 18 and 24 increases melanoma risk by about 90%.

Dr. LoConte: Thank you, Dr. Gershenwald. To summarize what we've discussed today, there are many known behaviors that can help reduce a person's risk of cancer, including maintaining a healthy weight, avoiding alcohol consumption, and protecting against ultraviolet radiation. Healthy lifestyle choices promote a cancer-suppressing environment in our organs, tissues, and even at the DNA level, thus increasing the potential together to reduce cancer risk.

I hope you've enjoyed our podcast. To learn more, please view our article online at ASCO.org/edbook. Thank you.

ASCO: Thank you Dr. LoConte, Dr. Gershenwald, and Dr. Thomson. Please visit ASCO.org/edbook to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

ASCO: You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Caring for a loved one with cancer can be challenging as well as rewarding. But you are not alone. In this series of podcasts, developed in collaboration with LIVESTRONG, Aditi Narayan and Mike Threadgould interview family caregivers, who share their stories and offer advice for others facing similar situations.

In today's podcast, Scott Joy, a testicular cancer survivor and patient advocate, discusses his experience when his wife Judy was diagnosed with multiple myeloma, including some of the bright spots and challenges, things he wishes he had known at the time, and tips for other caregivers.

Aditi Narayan is a social worker and Director of Programs & Strategy at LIVESTRONG, and Mike Threadgould is Senior Manager of Marketing & Communications at LIVESTRONG. Scott Joy is a LIVESTRONG senior leader and a member of Cyclists Combating Cancer.

ASCO and LIVESTRONG would like to thank Mr. Joy for discussing this topic.

Aditi Narayan: I'm Aditi Narayan.

Mike Threadgould: And I'm Mike Threadgould.

Aditi Narayan: And we're with the LIVESTRONG Foundation where our mission is to improve the lives of people affected by cancer now. We are joined today by Scott. Scott, thanks so much for being here.

Scott Joy: I'm happy to be here with you.

Aditi Narayan: Thanks. Can you tell us a little bit about who you are and your connection to cancer?

Scott Joy: Yes, I can. My name is Scott Joy, and I'm from the New Hampshire seacoast. I'm a father of four adult children in their 20's. I'm a business technology professional, a tenor, a recreational cyclist, and a 15-year testicular cancer survivor myself, and a LIVESTRONG volunteer since my diagnosis.

But I'm here to talk about my role as a caregiver for my wife of 26 years, Judy, who was a beautiful woman, intelligent, witty as a can be, a novelist of 2 young adult science fiction novels. And, unfortunately, 10 years after my diagnosis, she was herself diagnosed with multiple myeloma, which is a blood cancer, and only lived with the disease for about 3 months or so. So I'm here to talk about that.

Aditi Narayan: Thank you for sharing.

Mike Threadgould: And so, obviously, here we're talking about roles as a caregiver. What would be something you would share with somebody else who was facing being a caregiver and the challenges or the opportunities that they would face?

Scott Joy: I think the first thing I would say is to be easy on yourself, that it's a tough role, and you will make mistakes. And if you can talk them through, mostly with yourself, just be kind on yourself. Do your best. Accept all of the feelings as they come. You'll have them all. Take help where you can get it. Be sure to take care of yourself, to step back and rest when you need to, and just do what you can.

Aditi Narayan: And would you say that those are things— I mean hindsight is 20-20, right? So are those things that you did yourself? Did you accept the feelings during the process, or was that something you wish you had done after?

Scott Joy: It's always a mix, right? So there are some things that I— I felt fairly prepared just because at that point, I'd had 10 years of experience myself in the patient role. I had friends from the LIVESTRONG community. I felt I had lots of resources I could turn to, both for information and for emotional support and just for the practical, "what should I do?"

But it's still hard. Knowing that you can do it and feeling that you can do it are awfully different things. So I did feel somewhat prepared, but I had a lot of learning to do along the way to feel like I'm not doing enough: there's got to be something more we can do. I'm doing too much: Judy's now feeling overwhelmed with all of the options I'm trying to provide to her, and she just wants to talk to the doctor, and get into treatment, and not worry about all of the other things I might be able to do to help her. I'm going too far now. So I had a lot to learn.

Aditi Narayan: Yeah. It sounds like it. And so would you say that communication line between you and Judy seemed to be really important in keeping that open?

Scott Joy: It absolutely is important. I'm not going to say I got it right all the time, for sure. But I do think that her diagnosis actually helped our communication in some ways. She could now sort of suddenly understand some of what I'd gone through and appreciate it more. She told me at one point, "You know? I would marry you all over again," which is something I hadn't heard in a while. [laughter] So there were good points.

Mike Threadgould: And I think we've spoken before, and we know at LIVESTRONG we talk a lot about the fact that there are a lot of resources now for cancer patients, to deal with their emotional challenges, and we provide those in different ways. But a lot of the time the caregiver is not aware of those challenges and the emotions that come with it. What were some of the challenges that you felt as a caregiver which maybe was different than being a patient?

Scott Joy: Let me think about that. One of the things that was just so different is that in the patient experience, I sort of still felt like I was in control about decisions that needed to be made, because it was all about me. And in the caregiver role, I had to realize that I'm not in control of anything. It really is about what she needs. And although I need to try to get all of the information I can and absorb all of that and help where I can, I also need to realize that what I want isn't what matters right now. It matters some but it doesn't matter as much as, "what does Judy need?"

So that was a big change and, obviously, the realization that this is an incurable disease that she had. I had a disease that could be treated and cured. She had one that needed to be managed and sort of coping with that from the beginning, that I am going to lose my wife. I don't know when. Maybe it's going to be 10 years down the road. Maybe it's longer. Maybe it's shorter. I had no idea it was going to be 3 months. And just understanding that someday— all of us are going to have limited time on the earth, so it's not a surprise. But just the realization of this is going to change my life. That was a big deal. So strap in. Do what you can. Be there for her in sickness and health. That's what I promised to do, and I did the best I could.

Mike Threadgould: We all find our way in our way I suppose.

Scott Joy: Right.

Aditi Narayan: Was there anything that was a part of your experience and your journey that you would say was unexpected or surprising?

Scott Joy: I think the unexpected part for me, other than just the diagnosis itself, the I'm no longer the cancer patient in this family here, right? was the difference in the role. I expected that all of the information and the support that I had would be enough, and it wasn't. It just wasn't enough to solve the problem and to get to the cure, to get past it and live a long, healthy life together. That was the surprising part. And then just the not being prepared for the what-ifs, the pushing that aside and focusing solely on the treatment and the path to cure, and not thinking about the, "what if this doesn't work?" It was always, "what's the next step going to be, and the step after that?" and not the preparing for the worst-case scenario.

Aditi Narayan: And what was the impact—because you mentioned at the start of this conversation that you're the father of 4, and your kids are now all in their 20's—but what was the impact in terms of caregiving, not only for your wife who had cancer, but also for 4 children at the time?

Scott Joy: That was the one thing that I wish I had more help with was knowing the right way to help my kids. We're so focused on the practical things of the getting to the hospital and the meal delivery and the-- they're all still-- at that point were all still in school. Three of them were still in high school, and one was off in college. And I would love to have known how to better help them with what they needed. My sons, in particular, I think were maybe more, setting that aside and thinking, "I'm going to class, and I'm going to soccer practice, and I feel for mom, but I'm also living my own life as a teenager." And I don't know yet, still, how that's impacted them and will show itself in the years ahead. I think my daughters tell me more about it, and my sons just sort of shrug it off.

Mike Threadgould: So in a similar kind of realm, and you said that they were going to school every day and trying to live day-to-day, how did being a caregiver affect you day-to-day? Obviously, you had to change your routine, as you mentioned having meals delivered. What was that experience like?

Scott Joy: So part of it was trying to stay as much as possible in the routine and continuing to work, which is necessary to support the family, and not feeling like the world is as shaken as it is. So I did keep going to work. It's hard not to feel distracted every moment—but you know that things that have to be done in the office—but to be open to leaving when you can to help, and to get to a point and to make sure that Judy had the company she needed.

I was lucky that we had a neighbor up the street, a close family friend, who could step in and help with a lot of that so I could continue to work without feeling like I was abandoning my wife.

I think I'm stepping away from the question now. Can you help me back to it?

Mike Threadgould: I think you've touched on that. It was more just the day-to-day. Like you say, going to work, that's, obviously a big shift in emotional energy that you have to go through, and the day-to-day becomes a very different routine when you're a caregiver.

Scott Joy: Right, yeah. It really does. Between the mix of trying to stay normal and the needing to take on new responsibilities, things that Judy would have done. We were both working parents and were more partners before, and to have to have that shift where now I've got to worry about making sure the house stays clean, and the pool gets vacuumed, and all of those things that just weren't on my plate before.

And how much of it can I take on? And how much of it is fair to ask the kids to try to help with? And how much can we feel comfortable depending on other people and take the help? People are offering it and want to help, so don't be embarrassed or worried that you're becoming a burden. If people are willing and able to do that then, by all means, let them. It's good for everybody.

Mike Threadgould: Absolutely.

Aditi Narayan: So you mentioned that you had a neighbor who came in and stepped up and was really helpful to you. Who were some other people that really helped with your day-to-day caregiving tasks?

Scott Joy: I think a lot of the day-to-day caregiving fell to me and to Marnie. And the practical side of things, I guess, would be supported, of course, by the hospital staff and not just the doctors but the nurses for certain. They have some emotional support resources. That's less on the practical and more on the emotional, but you can't get the practical done without the emotional help, or you fall apart. So that's a certainly a big part of it is just having somebody to lend an ear to keep you going.

Mike Threadgould: And you mentioned earlier the importance of taking time for yourself. Do you feel like you managed to do that? What we hear from a lot of caregivers who they only do that when they reach the end of their rope. They don't do it early enough that it actually helps them through the process. They kind of get to this point where oh god, I've got to take time for myself. Did you feel like you went through that in a positive way, or was it— how would you explain it?

Scott Joy: I think it was learning. It was a struggle to feel I was getting it right. There's some guilt when you step back and think I'm not doing enough. I'm not filling the role I need to.

I thought we were going to be doing this for years, so I wasn't sure how much to pace myself. I did enlist family help. Now that I had got it, Judy has had 3 older sisters and a brother. And 2 of her sisters were-- 3 of her sisters, all of her sisters, were able to come and spend some time. So I took advantage of that and didn't cancel my attendance at a business conference. So I escaped to Orlando for a few days in October which I wouldn't have done if I had known, that was 6 weeks, I guess, from Judy's death. I wouldn't have gone. I absolutely would not have gone. But I got away for that.

I stayed true to my commitment to go to the LIVESTRONG Challenge here in Austin. So I was expecting that that was going to be my break. And then I would go home, and we would get ready for the bone marrow transplant that was planned in January. And we just didn't get that far. So I think I was pacing myself more than I would have if I had known which should have been a good thing. I should have been taking the time I needed for myself.

Mike Threadgould: Exactly. It's so hard to know when a diagnosis has no defined limits to. It could be three months. It could be 10 years. How do you pace yourself through that? There's such uncertainty. You obviously want to make the most of life, but you've got to find that balance of taking time for yourself and re-energizing yourself to be there for your partner, or whoever it is, that you're helping. So a difficult situation for sure.

Aditi Narayan: We've talked a little bit about your support systems. We've talked about Judy's family. We've talked about your neighbors and, perhaps, other friends who were supportive. Were there any resources, other than family and friends, that you took advantage of or that you accessed that were really helpful for you and maybe for your children as well?

Scott Joy: The local Stratham Community Church, a lot of support from that group. Really, friends and neighbors. The meals that kept coming which they managed to pace well for us so that we weren't feeling completely overwhelmed by that, too, which can be if everybody's trying to help so much that you don't know how to control the help as it comes in. We didn't have to. We had somebody who was helping with that.

I think really just the knowing how to help my kids and more family resources than practical resources, I guess. If we'd had other people who had been let us take the kids for the day or— because with the only help there was people who were trying to talk to the kids about their experience. And the kids didn't want to have those conversations.

Aditi Narayan: So somebody to really normalize, to some extent, their day, to sort of not focus on the cancer for a while.

Scott Joy: Right, right. I guess to do that in a way that feels respectful and if they're open to what they want to talk about, great. And it's a tough balancing act to know what's right. I don't think I got it right.

Aditi Narayan: I think that's a really interesting feeling and thought. And I'm sure it's something that many caregivers struggle with is did I get it right or feeling like they didn't get it right. But really what is right? It's such an arbitrary concept.

Scott Joy: Yeah. You don't know. And I think it was different for each of them. I think my daughters were closer in how they reacted and what they needed. My sons were closer in what they needed and how they reacted. But all four of them have different personalities and perspectives and needs. And understanding that on top of—we've got to be 100% focused on Judy. But they need help too. And what is that help?

Aditi Narayan: Yeah. And I wonder for-- you've talked a little bit about how at some points Judy felt overwhelmed with the attention that she was receiving as a result of her diagnosis and care. I wonder how that puts a strain on dynamics between you and your spouse, but also the parents and children as well, is how everybody's trying to find that balance of wanting to normalize but also wanting to acknowledge that something's not right.

Scott Joy: Right, yeah. And the other complicating factor was, of course, the difference that all of the pain medications had in just Judy's behavior some of which was just alertness and ability to understand. Opioids really take a toll when you're so dependent on the pain medications to not feel terrible all of the time. That was a struggle for her.

Mike Threadgould: Do you feel like your healthcare team prepared you for those struggles in terms of, particularly with the medication and the changes that are going to be physical and mental that that would bring to her, but also how it might impact you?

Scott Joy: I think that was another big surprise for us and certainly for me. I don't know, honestly, how Judy-- how much she knew about what the impact, whether it was just happening. I'm sure she recognized that in the changes and the phone calls she would make and just bewildered, "I'm not sure. I think I just took a pill, but I don't know. What should I do?"

And I don't know how to help with that from my desk at work. I can't tell whether you just took a pill. How do I help you? So some of that was a big challenge. And I don't think we were well-prepared for it to know these are the things that may happen, and what you should do when they happen, and when you should call us for help. I think we could have used some more guidance.

And there was so much more concern, I think, about the practical parts of it about making sure we got the dosages right, and the pain was under control, and less about the here's how this may affect your relationship and your cognitive function. And those things just-- I don't recall them coming up. You had to discover them.

Aditi Narayan: So you just mentioned something interesting that the healthcare didn't quite address how Judy's care was going to impact your relationship. So how did it impact your relationship?

Scott Joy: Well, I mentioned that in some ways it brought us a lot closer together. That suddenly I felt, we felt, that we had something we needed to solve, to go through together, that she felt, "oh, all of that experience you have from Livestrong and the cancer community suddenly is relevant to me. It's not something you're off doing. It's now part of our life," and I thought that was positive and healthy. Aside from the effect of the pain meds and how much she really sometimes was in a daze, when she was more alert and willing to talk, it was more open and more candid. And that was all good. I think the hardest part was, you know, we both were focused on, as I said, on the treatment, on the search for the cure, on the let's get through it.

And we should have talked more about, "when one of us is gone, what does the other want?" I'm now navigating through the how can I continue to have Judy be part of the kids' life affect what we do as a family. Carrying on the traditions and all of the decisions that had to be made after her death about care for the kids and her own services and all of that. I would have loved to have known because she told me not because I can figure it out. And I can figure a lot of it out, because we spent 26 years in marriage and years before that. We met in high school, and we were high school sweethearts so all of that. I can figure a lot of it out.

But I wish we had talked through more of it which is so hard to do because we don't want to concede. We're fighting to the end. And I didn't talk about the intervention, I guess, where the healthcare team and our minister brought me in and were trying to have some of that conversation about end-of-life care and all of the things that we should have in place. And I think that was frightening for Judy at a point where she wasn't ready to be scared that way. She needed to focus on I'm trying to get through the day here. But it left us with things that weren't said and done that should have been. It's so hard.

Aditi Narayan: Yeah. It really is. Are there those things that you found yourself thinking about but you didn't feel like it was the right time to bring it up with Judy?

Scott Joy: I had some of those times like out on my bike, right? So part of my keeping it normal was finding time— I wouldn't do the long rides. Normally, I would do a long weekend training ride, and I would maybe do an hour instead of half a day. But certainly, while I'm out, that's what my mind is going through is some of the what-if scenarios, and trying to push them out and saying I can't think about that but I have to. Yeah. So I did have some of that. And then it's, can I talk to you about it? Should I talk to you about it? And it never felt right. It was always, you're not ready for that, and I don't think it's the time.

Mike Threadgould: We've set this series up about caregivers and the phrase caregiver. Do you identify with that phrase? A lot of people use kind of different terms to talk about this role that you take on in supporting somebody that's going through a disease. Does that identify with you?

Scott Joy: It's an interesting question because I hadn't really thought about it until you posed it because caregiver is one that you can grab onto, like survivor, that initially this thing is that's a word that I can use to describe this. It's a shorthand and everyone will know what I mean. And then you start to think about it intellectually. And so what else does it mean, and how do I react to it if I think about it instead of just accept it? And it starts to sound a little bit more clinical. And I think how is that different from the healthcare professional role and what the nurses and doctors do? Aren't they caregivers? And does it feel more like "housekeeper?" So it doesn't have the same love to it that maybe I would want.

And so I just think of— thought of myself— think of myself as Judy's husband. And that says so much more to me where it doesn't necessarily mean what caregiver does, but it's the word I would choose for myself still. And caregiver was just one that I accepted because it was handy.

Mike Threadgould: That makes sense. And I think how you're saying if you think of yourself as husband and wife, just because one of you has something in their life that needs support doesn't change the fact that you're still husband and wife. And those relationships are built on love and support and doing whatever is necessary. So giving that change a label isn't necessarily of value to a caring relationship. It's interesting to think about it that way.

Aditi Narayan: You mentioned accepting the role, the title, and I was wondering did it feel like you had to feel certain things because someone was putting that role on you, that you are now a caregiver and you should be feeling these things, or you should be doing these things? A lot of "shoulds" involved there.

Scott Joy: That's a really interesting question and wonder if I had more of those checklists and resources if I would've resented them. [laughter] I don't think I felt that way. I felt that it was a role that I needed and wanted to step into. I didn't resent it. I can see how one might, especially depending on where you are in your relationship with the person you're providing care for. I felt it was something that I owed her and wanted to give. But that's a really interesting question. [laughter]

Aditi Narayan: Scott, we've talked a lot about your experience, a little bit about as a survivor, and then extensively about your role as Judy's husband. What is 1 word you would use to sort of try to capture that experience or describe it?

Scott Joy: I would pick the word "whirlwind." It's just the sudden storm of unexpected magnitude, and everything's circling around you and sometimes feeling like you're in the eye of the storm. And there are calm moments, but you know it's all still swirling around you. And it's a whirlwind, and it just tears everything apart but still moments of calm inside it.

Mike Threadgould: And if you look at where you are now, are you still in a whirlwind? Do you feel like you've moved into some other one-word description of your emotional state?

Scott Joy: I'd still pick the 1 word "healing" for where I am now. It's a long process of coming to terms. It's one of those things where it hurts to talk about it still, but it hurts a lot more not to talk about it. My kids and I have had some wonderful experiences since. I loved her, remember all of the things that we did together as a family.

I think there's some mixed opinion on how much we should talk about and remember that, and I love it. And I think how much does it hurt them, and how much does it help them? I think they're starting to come around now where now my son, Eric, will talk more about it and put on the "We Remember Judy" t-shirt, just spontaneously. So I think it's a long healing process.

Aditi Narayan: Well, Scott, thank you so much for being here. And thank you so much for sharing so openly and always being willing to share. I think your voice and your experience has healing to it, and I think that can never be emphasized enough in this journey. So thank you so much.

Scott Joy: Well, thank you.

Mike Threadgould: Thank you, Scott.

ASCO: Thank you, Mr. Joy. Learn more about caregiving at www.cancer.net/caregiving, and find support and resources for caregivers at LIVESTRONG.org. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

You're listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world's leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Many common cancer treatments can temporarily or permanently affect a woman's fertility, which is the ability to have children. In today's podcast, Dr. Karen Lisa Smith shares highlights from her article from the 2018 ASCO Educational Book, "Advances in Fertility Preservation for Young Women With Cancer." Dr. Smith is a medical oncologist at the Kimmel Cancer Center at Sibley Memorial Hospital and assistant professor of oncology at Johns Hopkins University School of Medicine.

Published annually, the Educational Book is a collection of articles written by ASCO Annual Meeting speakers and oncology experts. Each volume highlights the most compelling research and developments across the multidisciplinary fields of oncology.

ASCO would like to thank Dr. Smith for discussing this topic.

Dr. Smith: Hello, my name is Dr. Karen Lisa Smith from the Johns Hopkins University School of Medicine. In this podcast, I will be sharing some key points from my 2018 ASCO Educational Book article titled, "Advances in Fertility Preservation for Young Women With Cancer."

Each year, over 30,000 young women are diagnosed with cancer in the United States. The most common types of cancers in young women are breast and gynecologic cancers, blood cancers, sarcomas, brain tumors, and colorectal cancer. Many women, especially in Western countries like the United States, are choosing to become pregnant later in life. As a result, young women diagnosed with cancer may not have completed their families at the time of diagnosis.

Unfortunately, young women with cancer often require treatments that can make their future chances of childbearing low. For example, chemotherapy is toxic to the ovaries and radiation or surgery on reproductive organs carries a risk of future infertility. Additionally, some long-term treatments, such as hormonal therapy for breast cancer, require a woman to avoid becoming pregnant for years.

How to address infertility in cancer survivors is an important clinical issue. The majority of young female cancer survivors report reproductive concerns and many desire children. Pregnancy after cancer treatment does not appear to increase the risk of cancer coming back. However, young female cancer survivors become pregnant at lower rates than unaffected women in the general population.

There is good news for young cancer survivors who wish to start a family. Recent advances in reproductive health care allow doctors to help their patients preserve fertility before cancer treatment begins. Fertility preservation is safe and can often be accomplished without a significant delay in cancer care, especially if fertility goals are addressed early and interested patients are referred to fertility specialists during the course of their cancer treatment planning.

There are 2 main types of assisted reproductive the techniques that fertility specialists can use to preserve fertility in young women with cancer. The best established method of fertility preservation is embryo cryopreservation. Women who use this method first receive hormonal medications for several days to stimulate the ovaries. Next, they undergo a procedure to remove the eggs from the ovaries. In the lab, the eggs are fertilized using sperm from a committed male partner or donor sperm. The embryos are then frozen and stored for future use. Live birth rates using cryopreserved embryos in females with cancer are similar to those in infertile couples who undergo fertility treatments with fresh embryo transfers.

For women who do not have a committed male partner or who do not wish to use donor sperm, oocyte cryopreservation has become a standard option for fertility preservation. This method is similar to embryo cryopreservation in that women receive hormonal medications for several days to stimulate the ovaries and then undergo a procedure to remove the eggs from the ovaries. However, in the case of oocyte cryopreservation, the eggs are frozen and stored for future use without being fertilized first. Recent advances in laboratory techniques have allowed for successful oocyte freezing. We only know a little about pregnancy success in patients who freeze their eggs before cancer therapy, but what we do know shows that the success rates are comparable to those seen in the general population of women who freeze eggs in the absence of a cancer diagnosis.

A potential benefit of freezing eggs or embryos is the opportunity to test for hereditary conditions. After fertilization and culture, several cells can be sent for genetic analysis to identify known genetic mutations such as a BRCA mutation, which increases the risk for breast and ovarian cancers. Genetic testing may allow couples to avoid passing a known mutation on to their children.

Although many cancer survivors may be able to carry a pregnancy after treatment, some survivors will experience late effects of therapy or receive ongoing cancer therapies that make it unsafe or impossible to successfully carry a pregnancy. Cryopreserved embryos or embryos from cryopreserved oocytes may be transferred to a gestational carrier in the future if a patient is unable to carry a pregnancy herself.

It is important to note that both embryo cryopreservation and oocyte cryopreservation require women to undergo ovarian stimulation, which helps a woman develop more eggs, followed by egg retrieval. This process takes about 2 to 3 weeks and, therefore, has the potential to briefly delay cancer therapy. In most cases, this short delay is not significant.

Some patients, however, may need to start cancer therapy quickly and cannot wait the 2-3 weeks needed for ovarian stimulation. There are some new techniques currently being investigated for these patients.

One method harvests eggs without ovarian stimulation. Patients don't need to delay treatment with this method and it may have a lower cost. However, implantation and pregnancy success rates with this approach are lower.

Another investigational method is ovarian tissue cryopreservation, and this method is the only option for girls who have not yet hit puberty. It results in a minimal delay in treatment and can even be performed after exposure to some chemotherapy. It requires removal of all or part of the ovary, which is then frozen. The ovarian tissue can then be transplanted back into the patient when she is ready to become pregnant. Since the first time this technique was used in 2004, there have been over 130 live births reported after ovarian tissue transplantation. As with all procedures, there are risks involved with transplantation, including the possibility of reintroducing cancer cells in this tissue back into the patient.

In addition to considering fertility preservation prior to cancer therapy using the assisted reproductive techniques we have reviewed so far, young women with cancer can talk to their oncologists about ovarian suppression during chemotherapy as a method for ovarian protection and fertility preservation. Mediations called gonadotropin releasing hormone agonists (or GnRH agonists), help to reduce the toxicity of chemotherapy on the ovaries, and some studies have shown that this decreases the risk of infertility after cancer treatment. This treatment can also reduce the risk of early menopause resulting from chemotherapy.

Although many young women with cancer report desiring children and options for fertility preservation are available, few young women pursue these options. For example, in 1 study of 1,041 young women with cancer, only 4% pursued fertility preservation. There are many reasons for this, but young women who are diagnosed with cancer and wish to start or grow their family should talk to their doctors about their fertility preservation options before starting treatment.

To learn more, please view my article online at ASCO.org/edbook. Thank you.

ASCO: Thank you Dr. Smith. Please visit ASCO.org/edbook to read the full article. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO's Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.