It took two chemotherapy regimens, but Luke Mutter survived a rare form of bile duct cancer.  A CT scan found a 14cm tumor in his liver.  At that time, his care team told him he had cancer, but it could not identify the type of cancer.  He was put on a systemic chemotherapy cocktail of folfirinox and oxaplatin, which attempt to kill the tumor.  When that didn’t work, Luke learned he was a candidate for a hepatic artery infusion, which included chemo far stronger than his first regimen.  Luke has achieved survivorship and is very thankful to be to lead a healthy lifestyle.

Considering he was eventually diagnosed with bile duct cancer, his journey in an unlikely place.  His feet.  He saw a doctor thinking that as an active runner, he had plantar fascilitis.  Walking was very painful, as was laying down on his stomach.  That is what led to a CT scan, revealing a 14cm tumor in his liver. 

Luke saw an oncologist and was told he had cancer, but the doctor could not identify what type of cancer.  Nonetheless, the doctor said Luke needed to go on a regimen of systemic chemotherapy, which would affect his entire body, a regimen that sought to kill the tumor.  The cocktail consisted of oxaliplatin and folfirinox.  He received a dosage every two weeks for 18 months.

The tumor withstood the chemo, and Luke went to another hospital, where he qualified for a surgical procedure to install a hepatic artery infusion pump.  It directed chemotherapy just to the liver at a dose 300 times stronger than the systemic chemotherapy. 

Luke Mutter achieved survivorship and is thrilled to be back at work as a sales consultant.  He also considers a major blessing that after chemotherapy he can taste food, resume exercising and the ability to make his family and friends laugh.

By way of advice, he said during his journey, as much as he could, he decided to take charge, by controlling his mindset, exercise, diet and sleep, or as he like to call the group his MEDS.  Luke also serves as a mentor to those diagnosed with cholangiocarcinoma.

Additional Resources:

Support Group:

The Cholangiocarcinoma Foundation  https://www.cholangiocarcinomafoundation.org

It was a stressful journey, but Linda Trummer survived Stage IV mantle cell lymphoma.  In 2015, she went to her primary care physician after discovering a lump on her jaw line.  That led to a diagnosis of a slow-moving blood cancer, MALtoma.  However, further tests revealed a lump under her left arm and the diagnosis was upgraded to Stage IV mantle cell lymphoma, a rare form of blood cancer.  She underwent R-Hyper-CVAD, a multi-faceted chemotherapy regimen and just two months later was declared to have No Evidence of Disease.  Linda still suffers from the many side effects of her regimen, but is happy to be alive, especially when her prognosis indicated she would only live for another 18 to 24 months.

Linda was close to 60 years of age when she first noticed a lump on her jaw line.  She initially attributed it to her getting old, but when one day she saw the lump was growing, she sought medical attention.  A PET scan showed that she had MALT lymphoma, also known as MALtoma, a cancer associated with the mucosa-associated lymphoid tissue.  Linda switched oncologists and the second oncologist called for additional tests.  They revealed a lump under her left arm, and she was diagnosed with Stage IV mantle cell lymphoma.

Linda was placed on a chemotherapy regimen which included rituximab, doxorubicin, cyclophosphamide, vincristine, dexamethasone and cytarabine.  That was followed by six lumbar punctures of methotextrate.

Through it all, Linda Tremmer was an active patient.  She sought to help other cancer patients on her floor by setting up an arts class.  She also wrote poetry and with the aid of a cousin in Oregon, the poetry was set to music, which was played for the patients, who enjoyed getting care from a fellow cancer patient.

Linda’s regimen led to her being declared NED after two months, but she needed to stay on it and suffered from numerous side effects.  She was placed on medication for depression and PTSD, although she says the latter rarely presents a problem.  When she was diagnosed, Linda was told she would live another 18 to 24 months, and prepared to die.  She sought palliative care and was placed in home hospice.  She completed her will, set up cremation and wrote farewell letters to dear friends.  But when she got to the 24-month mark, she realized she was still very much alive and started concentrating on living and not dying, which she said was much tougher than it sounds.

These days, Linda is happy to be alive, enjoys living with her three dogs and two cats, and advocates for cancer patients through the Leukemia & Lymphoma Society and has a support group on Facebook.

By way of advice, she says anyone diagnosed with mantle cell lymphoma should make sure they find an oncologist who knows how to treat mantle cell, which is much easier today than it was in 2015.

Additional Resources:

Support Group:

The Leukemia & Lymphoma Society  https://www.lls.org

In 2021, one day away from his fortieth birthday, Ty Cedars felt pain in one of his testicles and noticed it was enlarged.  He contacted his physician, asking to be seen.  The following day, en route to a birthday celebration, Ty received a call from his doctor, requesting that Ty come right away.

The Alexandria, Louisiana-based schoolteacher soon underwent an ultrasound, then was directed to a urologist, who told Ty that he had testicular cancer.  He took the news calmly and was told by the doctor that this was a very treatable cancer, but that he would have to go on a chemotherapy regimen called BEP.  That is a cocktail consisting of cisplatin, beleomycin and etopicide. 

Ty said the worst part of the regimen was severe nausea.  He vomited acid into his throat, which took away his voice.  Ty also said he was extremely weak, and that resting wasn’t easy.  He could only watch television for ten to twenty minutes at a time.  Even though he had a stack of books ready to read, reading was out of the question because it was too hard to focus on the small print for much more than a paragraph.

As a singer in the local chorale, Ty found tranquility in choral music, which he accessed on YouTube.

The chemotherapy did its job and Ty was told there was no evidence of disease.  He was able to return to the classroom, can go to the gym, and his health is very close to what it was prior to his diagnosis.

However, he occasionally suffers from neuropathy, and because of the damage to his throat from the chemo regimen, his singing voice has dropped from a baritone to a bass.

Other than that, Ty Cedars is thrilled with the life he is leading.  By way of advice, he says if you notice something with your health that seems abnormal, don’t take chances and see your doctor.  Because he was proactive, his cancer was detected at an early stage.

Additional Resources:

Support Group:

The Testicular Cancer Society: https://www.testicularcancersociety.org

A clinical exercise physiologist by trade, Erin Bloodworth sought a career change and became an exercise oncologist.  This enabled her to take her expertise and apply it to helping cancer patients, which she does through Northwestern Medicine Living Well.

Erin says whether a patient is going through cancer treatment or is post-treatment, she puts the patient through an individualized exercise program.  She assesses the patient's health with tests tied to their ability to grip objects and go from a sitting position to a standing position and back.  Erin says the combination of exercise with a cancer treatment can aid the patient’s physical, mental and emotional health.  Through Living Well’s website, Erin Bloodworth can share her expertise with anyone in any location.

Additional Resources:

Northwestern Medicine Living Well: https://www.livingwellcrc.org

For Stewart Greenfield, the third time was the charm.  After checking pictures of his bladder in 2016, two doctors told him he didn’t have long to live; a third doctor told him he had Stage IV metastatic bladder cancer, but insisted he needed to be treated.  The cancer had burned a hole in his bladder and attacked lymph nodes from his groin to his neck.  Treatment included a chemotherapy cocktail of cisplatin and gemcidibine, plus qualifying for an immunotherapy, novolumab.  It was a smashing success.  Stewart says his urinary function is normal and he is able to resume his active lifestyle, which includes cycling and scuba diving.

A semi-retired kitchen designer, Stewart Greenfield of Scottsdale, Arizona, thought he was in good health when he went for his annual physical in 2016.  He was an active cyclist and scuba diver.  However, his doctor said his blood work was “inconclusive.”  After a second test was labeled inconclusive, the doctor prescribed antibiotics and called for a third blood test a week later.  The doctor got a similar result and sent Stewart to a urological surgeon.

The surgeon called for Stewart to undergo some scans and upon viewing them, gave Stewart some very bad news.  The surgeon did not mention the word ‘cancer,’ but said Stewart should get his affairs in order.

Stewart went to a second urologist who viewed pictures of Stewart’s bladder, again did not mention the word cancer, but said the condition of the bladder was so advanced, it was too late to treat it.  He had a hole in his bladder and the cancer had attacked lymph nodes from his groin to his neck.

Stewart had an appointment with a third surgeon.  She said he had Stage IV metastatic bladder cancer.  As he attempted to leave, the doctor blocked his path and insisted on treating his diagnosis.  At first he resisted, thinking he had received a death sentence, but he agreed to be treated. 

Stewart was put on a chemotherapy regimen with cisplatin.  The regimen was stepped up with the addition of gemcidibine.  As the regimen had been successful, he qualified for a new immunotherapy, novolumab.

The treatment was a success.  Stewart has normal urinary function and again takes part in cycling and scuba diving.

By way of advice, he urges those diagnosed with bladder cancer to stay positive, never lose hope and “fight the fight.”

Additional Resource:

Support Group:

The Bladder Cancer Advocacy Network   https://www.bcan.org

 Noelle Gatlin had to endure a lengthy, multi-step process, but she survived Stage II pancreatic cancer.  A visit to an emergency department revealed a mass near her pancreas. She was transferred to a hospital, where a second CT scan resulted in her diagnosis.  Her care team placed a duodenal stent in Noelle, then a bile duct stent.  She next underwent a 12-infusion chemotherapy regimen with folfirinox.  Then she was ready for a Whipple procedure, a pancreatic duodenectomy, which was a success.  Noelle says because she took care of herself before, during and after treatment, she believes she is now in better health than she was before her diagnosis.

In July 2022, Noelle began to experience symptoms associated with food poisoning.  At an urgent care, she was diagnosed with gastric reflux, but when stomach became distended, her husband urged her to go to an emergency department.  That’s where a CT scan revealed a mass near her pancreas.  She was next transferred to a hospital.  Wanting very much to vomit, but unable to, with the aid of an NG tube, her stomach was pumped.  She underwent another CT scan, then an endoscopy, after which a doctor told her she had Stage II pancreatic cancer. 

A duodenal stent was placed in her small intestine so that food could go around where her tumor had closed off her intestinal tract.  Noelle then had a bile duct stent placed from her liver.  Before she could undergo surgery, she went on a 12-infusion chemotherapy regimen with folfirinox. 

Months later came the Whipple Procedure.  Hers was a pancreatic duodenectomy.  Her gallbladder, the top 20 percent of her pancreas and the first section of her small intestine was removed.

The surgery was a success, and soon Noelle Gatlin returned to her job as a special education teacher in Riverton, Utah.  She followed instructions from care team and already enjoyed an active lifestyle.  This is why she believes her health today is better than it was prior to her diagnosis.

Additional Resources:

The Pancreatic Action Network (PanCAN): https://www.pancan.org

Laurie Adami seemed to have it all.  She was the president of her company, at age 40, she had just had a son and still found time to lead an active lifestyle.  However, in 2003, her health took a turn for the worse.  She felt a lump in her abdomen, experienced frequent, lengthy sinus infections and chronic fatigue.  All this led to a diagnosis of Stage IV Follicular Non-Hodgkin Lymphoma.  After six unsuccessful treatment regimens, she achieved complete remission on the seventh try, completing a battle that ran twelve years.

When Laurie initially brought her symptoms to the attention of her family doctor, they were dismissed as, at worst, a hernia, and exhaustion due to her demanding schedule; but Laurie insisted there was nothing ordinary about her symptoms and changed doctors.

She saw a hernia specialist who ordered a CT scan, which revealed a mass the size of a small watermelon on her abdomen.  After a biopsy, Laurie learned she had Stage IV Follicular Non-Hodgkin Lymphoma.  At that time, she had no idea of the difficulty and length of the journey awaiting her.

The first of six treatments that failed to overcome her diagnosis was in 2006 and called R-CHOP.  It was a mix of Rituxan plus Cytoxan, Adriamyacin and Prednisone.

Next in 2008 was a clinical trial of Rituxan, along with an HDAC inhibitor.

In 2010, Laurie tried Bendamustin, a medication popular in Eastern Europe.

When that didn’t work, later in the year, she went with Bexxar Radioimmunotherapy.

Of the first six regimens, Laurie had the most success with a pi3 kinase inhibitor called Zydelig.  For five and a half years ending in 2016, it shrunk the tumor without eliminating it.

The tumor returned and for six months ending in September 2017, she tried infusions of Gazvya.

On July 16, 2018, her tumor was still around, but Laurie qualified for a Phase II clinical trial of Yescarta CAR-T therapy.  Some 29 days later, her lymphoma specialist informed her she was in full remission.

Laurie Adami has resumed an active lifestyle, and does plenty of traveling, most of it to public speaking engagements, as she serves as an advocate for the Leukemia & Lymphoma Society.

Additional Resources:

Support Group:

The Leukemia & Lymphoma Society  https://www.lls.org

Nicole Scott and her husband, Keith, worked at the same Ohio hospital.  When Keith noticed abdominal pain in his left side, he thought it was muscle-related because of the physical nature of his job.  The pain radiated to his groin, then what had been random occurrences of the pain became more frequent.

Nicole urged Keith to seek urgent care.  An emergency room doctor called for a CT scan, thinking Keith had at worst, a hernia.  However, the CT scan revealed a mass on Keith’s kidney.  An MRI and partial nephrectomy resulted in a diagnosis of papillary renal cell carcinoma, a form of kidney.

Nicole and Keith were shocked by this diagnosis, but after she got over the shock, Nicole assumed the role of Keith’s caregiver.

She said without question, the toughest part of her caregiver experience was the emotional piece.  At first, there was a tremendous amount of fear and depression, as she thought Keith might not survive, but all the while she told herself she was caring for the love of her life, had to put up a positive front and be a source of encouragement for her husband.

Nicole said there was some at-home care involved, but much of her duties consisted of making sure that Keith made it to all of his doctor visits, most notably the successful surgical procedure and post-treatment care.

Caregiving can be a round-the-clock challenge, and Nicole said she came close to suffering from caregiver burnout, but she always did what needed to be done, at all times

realizing hers was a high-stakes task.

By way of advice, Nicole Scott says to anyone suddenly finding themselves in the role of caregiver to take a deep breath and never lose hope.  She says a caregiver needs to take of themselves.  She says it is “not selfish” to ask a friend to pitch in or to make time for some ‘me time,’ as that will make a caregiver a better caregiver.

Additional Resources:

The Kidney Cancer Association: https://www.kidneycancer.org

When Helinka Carr experienced limited rectal bleeding, because it was limited, she never thought her problem could rise to the level of cancer.  She also thought the bleeding might be diverticulitis, which had been suffered by members of her family.  However, at the urging of her doctor, she underwent blood tests and a colonoscopy.  The latter revealed that she had bowel cancer.  Thanks to two surgical procedures, she achieved survivorship but has to wear an ileostomy bag.  She tires easily, but had the energy to start a line of ostomy lingerie for bag-wearing women diagnosed with below-the-belt cancers.

Helinka Carr said when one experienced rectal bleeding for three weeks, that was the standard in the United Kingdom for being a candidate for bowel cancer.  Helinka while noticed bleeding in her rectum and in her stool, it didn’t exist to the degree that aligned with the accepted standard for bowel cancer.  She also said her family had a history of diverticulitis, which also led her to believe that she was not a candidate for bowel cancer.

Nonetheless, her general practitioner urged her to get the bleeding checked out.  After a series of blood tests, Helinka underwent a colonoscopy and bowel cancer was indicated.

Once upon learning of her diagnosis, she immediately refused chemotherapy.  She agreed to a regimen of radiation treatment, combined with her self-styled complimentary hearing.  It took two surgeries, but her tumor was removed.  Helinka detested the radiation therapy, and firmly believes her practicing complimentary healing all by itself could have removed the majority of her tumor.

Despite achieving survivorship, the radiation continued to affect her.  She suffered from pelvic radiation disease, which robbed her of any feeling in her rectum or bladder, creating major problems any time she had to urinate or defecate. 

Helinka’s care team said she would need to be fitted for an ileostomy bag.  At first she was told she would only have to wear it for twelve weeks; but after it was removed, she was incontinent and was told she again would have to wear the bag, this time on a permanent basis.  Helinka has figured out a way to manage the bag, go out and enjoy normal activities and get six to eight hours of sleep each night.

Helinka’s experience inspired her to devise a line of ostomy lingerie.  It is attractive underwear destined for bag-wearing women diagnosed with below-the-belt cancers.

By way of advice, Helinka Carr says regardless of your cancer diagnosis, you need to fiercely advocate for yourself.  That means asking lots of questions, and if your doctor cannot sufficiently answer your questions, to get another doctor.

Additional Resources:

Helinka’s lingerie line: Unspokenrosebud-Etsy

Guy Nakoa has survived two diagnoses of Stage IV breast cancer.  He initially felt a lump in his breast while showering in 2000.  Because it wasn’t causing him and because he didn’t think could not get a type of cancer associated with women, I went more than a decade before he chose to have the lump checked out.  In 2014, he sought medical attention, he was diagnosed and in 2016, he had the lump removed; but in 2020, the cancer returned.  He was hoping it could be removed with chemotherapy and radiation treatment, but over his initial objection, he agreed to a mastectomy of his left breast in 2024.  For the rest of his life, he will need to be on two medications, ibrance and letrozole.  Guy says from time to time he experiences fatigue but is very happy to be alive.

Guy Nakoa is from Wailuku on the island of Maui in Hawaii, but he has worked all over the world as a chef.  He was on a job in Alaska in 2000, when while taking a shower, he was shocked to feel a lump in his left breast.  Guy didn’t tell anyone about it because it wasn’t causing him any pain, and he felt too embarrassed to admit he may have a type of cancer that is generally associated with women. 

He finally decided to have the lump examined in 2014.  His doctor didn’t seem to think there was anything cancerous and told Guy not to worry about it.  Guy was misdiagnosed and he believes that, like he was, his doctor might have had difficulty connecting the lump with cancer because Guy is male.  Guy went to another doctor, and in 2016, he underwent a biopsy, which revealed he had breast cancer. 

Guy Nakoa had the lump removed in 2016.  He underwent a chemotherapy regimen in 2017 and again in 2018.  He says he lost his sense of taste, his anxiety level went “through the roof” and he had a tough time getting to sleep.

The surgery was a success, but in 2020, the cancer returned.  Guy wanted to again treat it with chemotherapy and radiation, but his doctor urged him to get the breast removed.  Guy eventually relented and the mastectomy took place in 2024.

Guy says these days, he can do just about anything he could do before he first felt the lump, but fatigue sometimes sets in, in a way it didn’t prior to his diagnosis.  By way of advice, he is quite adamant that, regardless of what seems irregular, if you notice something, anything abnormal about your health, to immediately seek medical attention.

Additional Resources:

Support Groups:

The Male Breast Cancer Global Alliance  https://www.mbcglobalalliance.org

Man Up To Cancer  https://www.manuptocancer.org

HIS Breast Cancer Awareness  https://www.hisbreastcancer.org