cgvhd

Juliane Belisle, MSW, LCSW-s, at Cancer Family Care in Cincinnati, provided counseling and other services to survivors and their families.  To outsiders, chronic Graft vs. Host Disease long haulers may appear fine.  Survivors have made it through transplant and the immediate aftermath.   But the unpredictability of cGVHD can lead to anxiety, depression, and despair and frankly, survivors get sick and tired....of being sick and tired.  And they have to learn how to "re-train their brain."  In this episode, Juliane shares self-care tips that are applicable not just to GVHD patients, but to all of us.

At a basic level, going to a treatment center can trigger our brain's "fight or flight" response.  This includes traumatic symptoms like irritability, loss of interest, numbing, and decreased concentration. Fighting the brain's limbic system can only make things worse.  Know that it's there to protect you.  Juliane talks about finding safeties, or even neutral things to focus on.

Mindfulness is key.  Focusing on the future creates anxiety, and focusing on the past creates regret. Focusing on the present is a way to fight these feelings and eliminate our mental "pollution."  Juliane walks Peg and our audience through some breathing exercises that can help counteract our reactions to stress. (Just don't do these while driving!)

Another tip is to focus on different senses - even something as simple as washing your hands can help refocus you.  There's also progressive muscle relaxation (link to a video below), and putting your feet up - way up - into an L shape.

We often catastrophize our situation - imagining the worse case scenario.  Juliane often has her patients create a paper with 3 columns: in my control, out of my control, and within my influence.  She walks us through that exercise.

Allow yourself to be worried or anxious, but limit that to a certain time period for the day. Self care is not selfish.  And just like we treat physical symptoms, we also need to take care of our minds as well.

Resources:

Progressive Muscle Relaxation: https://www.utoledo.edu/studentaffairs/counseling/anxietytoolbox/pmr.html

Juliane's Bio: https://www.cancerfamilycare.org/clinical-profiles/?smid=2163

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

nbmtLINK YouTube Page can be found by clicking here.

Thank you to this season's sponsors:

Pharmacyclics: https://www.pharmacyclics.com/

Janssen: https://www.janssen.com/

Kadmon: https://kadmon.com/

Sanofi: https://www.sanofi.com/

Dr. Sung Choi is a pediatric bone marrow transplant physician at Michigan Medicine (University of Michigan).

Dr. Choi joins us today to discuss the unique challenges for pediatric patients as it relates to Graft Versus Host Disease (cGVHD). Passionate and knowledgeable, Dr. Choi will tackle it all, including target organ damage, the cytokine storm, clinical trials and much more. 

Classic organs affected by acute GVHD include skin, liver and GI tract. Did you know that typically the skin is the most affected in both pediatric and adult patients struggling with GVHD? (Check out our other episode with Dr. Cowen of the NIH in this series for more on all things skin GVHD.)

Risk factors (of GVHD) are also discussed--how a mismatch  between the donor and recipient influences the onset of GVHD as well as age, conditioning chemo and much more. High dose steroids are covered and did you know that pediatric patients do not always respond to steroids? Listen in for other options. 

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

Dr. Choi bio: https://www.uofmhealth.org/profile/263/sung-won-choi-md

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/

Senior Clinician Dr. Edward Cowen is Head of the Dermatology Consultation Service at the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the NIH. Dr. Cowen will share his expertise on skin issues as they relate to Graft Versus Host Disease (GVHD). 

In this episode Dr. Cowen "covers" it all--dry scaly skin, red rashes, skin fibrosis and fasciitis. His expertise will make patients and caregivers alike feel more confident and knowledgeable about skin GVHD. When should you seek treatment and which doctor should you see? He will address clinical trials, long term prognosis and talks about what is on the horizon for the treatment of skin GVHD. 

He mentions topical over the counter treatments like Aquaphor and Sarna, as well as oral antihistamines like Benadryl, Allegra, Zyrtec, and Claritin.

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: 

Dr. Cowen's ruxolitinib trial: https://clinicaltrials.gov/ct2/show/NCT03395340

National Institute of Arthritis and Musculoskeletal and Skin Diseases: https://www.niams.nih.gov/

NIH Clinical Trials Website: https://clinicaltrials.gov/

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

https://www.niams.nih.gov/about/directory/edward-w-cowen-md-mhsc

Thank you to this season's sponsors:

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

Kadmon: https://kadmon.com/

Meredith Cowden was only 19 years-old when she was diagnosed with AML about 20 years ago. Meredith  has been dealing with GVHD in many manifestations for most of these two decades.  Polymyositis and steroid use are discussed as well as the incredible perseverance and determination this young lady carries with her each day. 

Meredith, a clinical counselor, is in the business of helping others thrive during the work day. And in her free time, she is always willing to share her story and her heart to help others. 

Her loving parents started the Meredith Cowden Foundation many years ago and is is an incredible organization dedicated to educating people and also raising funds for research to help those suffering. They host symposiums and secure the top experts in the nation to address these topics. The link to the foundation is located below. 

This wonderful episode is real, honest and chock full of tips and suggestions sure to help those dealing with Graft Versus Host Disease (GVHD) - including documentation, apps, being your own best advocate, and her "spoon" trick.

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: 

Meredith Cowden Foundation: https://cowdenfoundation.org

Pema Chodron’s website: https://pemachodronfoundation.org

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/

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/

This episode will set the record straight regarding cGVHD. Most cases will subside in 3-5 years. You won't want to miss this one from one of the world's leading experts on cGVHD.

Dr. Steve Pavletic is an incredible resource for folks with cGVHD. Dr. Pavletic leads a chronic GVHD clinic and natural history study at the National Institutes of Health. Learn more about cGVHD, treatment updates, and his incredible opportunity for those who qualify.

Dr. Pavletic will also speak about steroids, the love/hate relationship many experience with them, and much more.

Did you know that some cGVHD is actually good? You will want to hear more about this too.

For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268. 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.

This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed link partners.

Whether it's CAR -T questions, a need for a better understanding of clinical trials, cGVHD concerns, relationship/love issues, donor/age options or the truth on palliative care, we got you covered. Our interviews with the nation's leading doctors, social workers, and health care professionals will feature advice and expertise sure to help Bust Marrow Myths!

For additional resources from the National Bone Marrow Transplant Link, visit us online at nbmtlink.org or call us at 800-546-5268.

This season of Marrow Masters is sponsored by the nbmtLINK, Seattle Genetics, and our esteemed Link Partners.

• Diagnosed when 20 years old, Sharde has had many issues with cGVHD
• Sharde shares her coping mechanisms, tips and challenges
• Fatigue and pacing yourself
• How Sharde is living life to the fullest even with cGVHD.
• Importance of seeing a specialized doctor when you are not sure if it is cGVHD.
• Sharde’s incredible mom, caregiver/support system
• Remembering how far she has come and living life in the present day.
• How Sharde has accepted that this is where I am and I am alive.
• Would Sharde have the transplant again, knowing all that she knows? Tune in and find out. You will be inspired.

• I’m Home: What do I do now regarding seeing a doctor.
• Be your own advocate
• Notice the little things, over report symptoms to your center
• Forever fatigue covered: (Learn more about Light Therapy by visiting
• Your New Normal: Check out the LINK's award winning DVD.
• Finding your way: new crossroads
• Embrace living
• The painfulness of cGVHD discussed
• Photopheresis, ECP: Click here for more on photophersis
• Your caregiver: the forgotten one
• Meditation and mindfulness
• Depression and anxiety covered
• Fear of getting cGVHD: Education is key
• Even after all I have seen, yes, I would get a transplant!
• Did you know more and more older people getting transplanted today?

• Medications/options and steroids
• First treatment: steroids and its side effects- muscle weakness, diabetes, etc.
• What is on the horizon: treatment options explained
• Extracorporeal photopheresis (ECP), a cutting-edge, nonsurgical procedure to treat graft-versus-host disease explained. Click here for more on ECP (Photophersis)
• Various drugs discussed and their relationship to steroid use
• Clinical Trials discussed: Important and used as upfront therapy: Click here for more re: Jason Carter Clinical Trials
• Research as it relates to better treatments through clinical trials
• Great information on a NIH free clinic on cGVHD. Click here for the link.

• Definition of acute and chronic Graft Versus Host Disease (GVHD)
• Examples of organs affected by both acute and chronic GVHD
• Organs covered from head to toe
• Fatigue
• Your risk of getting cGVHD
• Importance of staying in touch with your transplant center
Click here to visit the Karmanos Cancer Center
• Resources available through the nbmtLINK