Perry Cheathem noticed swelling in his legs in 2014. After many rounds of chemo that were not working, Perry had his life-saving bone marrow transplant in June of 2015. This determined man of faith and dad of five children says he was actually honored to get cancer, deciding it was a testimony to help others. He was not afraid and is at peace with the process, walking with God through it all. 

Perry shares his donor story and his desire to help build awareness of the donor process, especially as it relates to minorities. Perry's Graft Versus Host Disease (GVHD) issues included dry eyes, dry mouth, and speech issues. These led to dental and breathing issues. But it just doesn't stop this determined, resilient guy from sticking to it and succeeding. In fact, Perry was recently able to run a three mile race. 

Perry shares his story of love and support from family and friends--and you won't want to miss a 20-year story of friendship that stood the test of time. Perry hasn't let cancer define him and his story will inspire you to keep moving forward and plan for the future with grace and love in your heart.

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources: 

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Thank you to this season's sponsors:

Incyte Corporation: https://www.incyte.com/

Kadmon: https://kadmon.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

In June of 2016, 69 year old retired CPA Harry Johnston went on a safari in South Africa. He did not feel well and even thought he'd been bitten by a tick. Turns out, he was diagnosed with AML. But there is good news. 

Tune in as Harry shares his transplant story and Chronic Graft Versus Host Disease (cGVHD) issues that began in 2019. He had thickening of the fascia – the layer of tissue below the skin. This caused tightening around the stomach, which interfered with air intake. Then he had to change studies and centers due to COVID protocols. Harry shares that although they have been unable to reverse the effects of his GVHD, the clinical trials have helped reduce the progression of the GVHD as different drugs were introduced.

And you have to hear the story of how Harry met his donor, a woman in Sweden, through luck and perseverance.

Harry will share that although his lifestyle is certainly somewhat restricted, he and his family are enjoying life.  In fact, he just made his first post-COVID venture to Montana for a week of fly fishing.

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources: 

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Thank you to this season's sponsors:

Incyte Corporation: https://www.incyte.com/

Kadmon: https://kadmon.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Lisa Loutzenhiser was 56 years-old when she felt off in December. It was the holidays, and she was simply just exhausted. A teacher, she carried on until she needed to finally call in sick one day. Her diagnosis in late January was AML, and the journey began with her transplant in May of 2020. Oh, and let's add COVID to the story too. 

Lisa will share her Graft Versus Host Disease (GVHD) story including her skin issues, precautions needed for being in the sun, gut issues and much more. "As if the diagnosis wasn't enough, GVHD was an extra job," she says.

Lisa is supported by her now-husband and two daughters, and she shares the importance of finding your group and what she calls "the benefits of cancer." You won't want to miss that. This incredible lady is honest about what it took to get to this point. She's now back to gardening, enjoying her vineyard, and traveling the country in her Fifth Wheel camper.

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources: 

The Cancer Patient on Instagram: https://www.instagram.com/thecancerpatient/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Thank you to this season's sponsors:

Incyte Corporation: https://www.incyte.com/

Kadmon: https://kadmon.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Season 6 of the Marrow Masters podcast series, sponsored by the National Bone Marrow Transplant Link, Incyte Corporation and Kadmon. The National Bone Marrow Transplant link, established in 1992, strives to help patients, caregivers, and their families cope with the psycho-social challenges of transplant, from diagnosis through survivorship.  Season 6 focuses on advice for dealing with Graft Versus Host Disease (GVHD).  We’ll hear from health care professionals on the front lines of this disease.

We will also hear from patients who have many different perspectives on cancer and GVHD.

Don’t miss Season 6 of the Marrow Masters podcast.  Follow us on Apple, Spotify, or wherever you get your podcasts.  For more information on the Marrow Masters podcast and the National Bone Marrow Transplant link, visit nbmtlink.org.

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources: 

The Cancer Patient on Instagram: https://www.instagram.com/thecancerpatient/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Thank you to this season's sponsors:

Incyte Corporation: https://www.incyte.com/

Kadmon: https://kadmon.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Welcome to Marrow Masters, Season Five, sponsored by the National Bone Marrow Transplant Link, Seagen, Omeros Corporation, and The Leukemia & Lymphoma Society. The National Bone Marrow Transplant Link, established in 1992 strives to help patients caregivers and their families cope with the psychosocial challenges of transplant from diagnosis through survivorship.

In season five, join Peggy Burkhard, executive director of the nbmtLINK as she focuses on all things survivorship.  

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources:

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

Thank you to this season's sponsors:

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

SeaGen Inc: https://www.seagen.com/

Omeros Corporation: https://www.omeros.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Juanita McReynolds received her life-saving bone marrow transplant back in 1996 after being diagnosed with acute myeloid leukemia (AML). In our first episode of Season 5, McReynolds talks about perspective and purpose. Post-transplant, Juanita was able to care for her then-disabled husband, an ailing mother-in-law, and a sibling. Speaking of siblings, learn more about Juanita's incredible journey with her brother who was her donor. She claims her transplant also fixed her heart--you won't want to miss this one. 

Juanita also speaks to self care-- a critical part of recovery. She takes care of her body with exercise, and she takes care of her mind by singing, and volunteering with her church as well as our family here at the LINK.

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources: 

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

Thank you to this season's sponsors:

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

Seagen: https://www.seagen.com/

Omeros Corporation: https://www.omeros.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Mike Ansley (seen left in this photo) is a 10 year Acute lymphocytic leukemia (ALL) survivor and military veteran. When he was in the Navy, he and his colleagues used the term "embrace the suck." There were times when they were in tough situations, and they had to acknowledge their limitations. The same is true for survivorship.

Another mantra Mike lives by is "Faith, Family, Friends." As long as you keep those three things as priorities, the rest is just "stuff." Lean on your faith, family, and friends as you go through this journey.  They can even help you when life throws you curve balls. 

Clinical trials have been a key part of Mike's journey, and he walks us through that process, as well as how distance running has remained a big part of his life. Go Mike!

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources: 

Mike's blog: "Embrace The Suck:" https://www.nbmtlink.org/author/mansley/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

Thank you to this season's sponsors:

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

Seagen: https://www.seagen.com/

Omeros Corporation: https://www.omeros.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

Licensed Clinical Social Worker and Manager Karen Hartman of New York's Memorial Sloan Kettering Cancer Center joins us today to talk about life after transplant. So much goes into medical care up to, during, and immediately after transplant. But survivorship is its own key phase of the experience.

Senses of loss and vulnerability are common during this part of the cancer experience. Medical care is not as intense, and fear or recurrence can often creep in. 

Anxiety can be triggered by expected events, such as scans, also know as "scanxiety", or even unexpected moments like a certain song or even a smell.

It's important for a patient's support system to understand that the cancer journey does not end with treatment. Recovery and survivorship are lifelong processes and patients need people to lean on. 

The phrase "the gift of cancer" may sound absurd, but Peggy and Karen explain what that really means in today's discussion.

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources:

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

Thank you to this season's sponsors:

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

Seagen: https://www.seagen.com/

Omeros Corporation: https://www.omeros.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

The cancer journey is a difficult for everyone, but being diagnosed as a young adult brings its own unique set of challenges. Stephanie Scoletti was diagnosed with Acute lymphoblastic leukemia (ALL) just before her 20th birthday. She changed her career focus from pharmacist to social worker and wants to provide resources and kinship for those in similar circumstances.  

For survivors, some friends may not know what to say or do, but others step up in ways you'd never imagine. Her non-profit organization, Young Adult Survivors United, YASU, helps patients and survivors "find their herd" and connect with folks in similar circumstances. Through the pandemic, she's been able to grow her virtual programs and expand her community.  Stephanie also shares stories of two amazing individuals she's been able to work with. 

Additionally,  Stephanie husband Matt Scoletti hosts a podcast called Livin the DREAM. Matt is a health coach and motivational speaker who helps people learn practical ideas to level up their health, wellness, and energy. D.R.E.A.M. is an acronym that Matt uses that stands for Diet, Rest, Exercise, Attitude, and Meaning. If you own these 5 topics, your life will be FULL OF INCREDIBLE ENERGY! Check them out!

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

All Other Resources:

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

Stephanie's blog on "Finding Your Herd" on Elephants and Tea: https://elephantsandtea.com/survivorship/finding-your-herd-yasu-style/

Stephanie's Group, Young Adult Survivors Unite Website: https://www.yasurvivors.org/

Imerman Angels Website: https://imermanangels.org/

Thank you to this season's sponsors:

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

Seagen: https://www.seagen.com/

Omeros Corporation: https://www.omeros.com/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.

No amount of medical training can adequately prepare you for the news that your 9 month-old-daughter has a rare form of leukemia, AML.  But that's the position Dr. Omar Durani found himself in when Kenza was diagnosed in 2016.

Throughout his touching story, Dr. Durani talks of he and his wife moving into their daughter's 100 square foot hospital room, the roller coaster of multiple rounds of aggressive chemo, organizing bone marrow drives through DKMS, and ultimately getting Kenza into a clinical trial.  

After failing to find an exact match, Dr. Durani became his daughter's donor for a haplo transplant when they found out his wife was pregnant with their second child.

Dr. Durani shares so many lessons learned throughout this adventure - including the need to register more bone marrow donors in minority communities, the importance of being a strong patient advocate for you or your child, and the importance of clinical trials. Also, don't be afraid to ask for multiple medical opinions. Your medical teams will not be threatened - they want to get it right.

And how is Kenza today? You will want to hear all about it. Inspiration at its best. 

The information in this podcast should not be construed as medical advice. Please consult with your health care provider regarding your medical decisions and treatment. The listed resources are not intended to be endorsements.

Resources:

DKMS Donor Registry: https://www.dkms.org/  DKMS is the world’s largest bone marrow donor center with over 10.5 million registered donors and operations in seven countries.

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

Thank you to this season's sponsors:

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

Seagen: https://www.seagen.com/

Omeros Corporation: https://www.omeros.com/

Additional media pieces on The Durani Family Journey:

1. https://www.youtube.com/watch?v=CnasRnxGw6w
2. https://www.12news.com/article/news/local/valley/bone-marrow-donors-sought-among-islamic-community/75-230814673
3. Cure Magazine article: https://www.curetoday.com/view/coming-of-age-new-research-efforts-are-improving-treatment-of-childhood-blood-cancers
4. https://browngirlmagazine.com/2016/05/cancer-touches-everyone-help-cure-kenza/
5. https://www.healthline.com/health-news/bone-marrow-drive-for-muslim-girl-goes-viral
6. https://cw33.com/news/save-kenza-little-girl-with-leukemia-spreads-awareness-hope/
7. https://fwtx.com/news/voice/dallas-toddler-raises-awareness-across-country/

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

Follow the nbmtLINK on Instagram! https://www.instagram.com/nbmtlink/

The nbmtLINK YouTube Page can be found by clicking here.

To participate in the GVHD Mosaic, click here: https://amp.livemosaics.com/gvhd

This content is provided for informational purposes only and is not intended to substitute for professional medical advice, diagnosis, or treatment.  It is crucial to consult directly with a qualified healthcare professional regarding any medical conditions, treatment options, or other health concerns.

The views and opinions expressed by the speakers are their own and do not necessarily reflect the official policy or position of the nbmtLINK.  Unless otherwise stated in an official policy, the nbmtLINK does not endorse any specific treatments, products, or services mentioned by the speakers. Reliance on any information provided is solely at your own risk.

Hosted by Simplecast, an AdsWizz company. See pcm.adswizz.com for information about our collection and use of personal data for advertising.