chronic graft vs host disease

Season 7 of Marrow Masters focuses on chronic Graft vs. Host Disease sufferers, or GVHD "long haulers."  And our first episode is about an important topic that doesn't get enough attention - reproductive and sexual health.

Dr. Areej El-Jawahri is an oncologist at Massachusetts General Hospital in Boston.   And while that is her primary role, her work experience has taught her about the need to focus on these issues.   A majority of transplant survivors struggle with sexual health issues and concerns regarding intimacy and fertility.  Dr. El-Jawahri gives us the hard numbers, as well as a wide array of symptoms and side-effects.

She talks about the changing dynamic with couples when they become patient and caregiver, and how important it is to have open, honest communication regarding sexual health.  Often, a patient's concerns about their partner are misaligned with what their partner is actually prioritizing! Communication is also crucial with your medical team.  While these topics may sometimes be hard to bring up, they are important to discuss.  And today's methods of confidential, electronic communication may provide a vehicle for those who are uncomfortable having these discussions in an office setting.

Dr. El-Jawahri also discusses fertility concerns for younger couples.  Often, and rightfully so, there is a rush to treat a patient's cancer.  But it may be worth consulting fertility specialists at the beginning of the process.

Peg and today's guest also talk about different forms of intimacy.  While sex may be the first thing that comes to mind, there are other ways to be intimate and show each other attention and love.

Finally, Dr. El-Jawahri tells us about the jaw-dropping question a patient asked her that prompted her to begin paying more attention to sex and intimacy with transplant survivors.

Resources:

Dr. El-Jawahri's bio: https://www.massgeneral.org/doctors/19647/areej-el-jawahri

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. Sean Smith is the director of the cancer rehabilitation program at Michigan Medicine, in Ann Arbor, as well as an associate professor at the University of Michigan. He's dedicated to helping patients improve function as it relates to a variety of musculoskeletal, neurological and cognitive deficits related to cancer and its treatment.

Dr. Smith says every patient is different, and they may try many treatments at once to find the best fit for each individual situation.  The sooner he and his team can intervene, often the better the results.

Skin and muscle tightening can sometimes occur with chronic GVHD.  One of the first treatment methods is stretching - whether that's giving a patient stretching exercises to do or employing the help of a physical or occupational therapist.   There are also other methods to break up scar tissue.  Other tactics may include cortisone injections, paraffin baths, and oral or topical steroids.  Dr. Smith explains how these tools are used.

 Fatigue is a very common issue relating to chronic Graft vs. Host Disease.  This can be due to anemia, drug side effects, poor sleep, and other factors. Our guest walks through treatment of each of these individual symptoms.

Exercise, mindfulness, and even meditation are key tools in Dr. Smith's toolbox.  Your definition of exercise may be different than before transplant, but spending the time doing what you can is so important.  He shares some sobering numbers about how quickly muscles can deteriorate after transplant if not used.   Dr. Smith also talks about "pre-habilitation" - the exercise you can do before transplant.

Resources:

Dr. Sean Smith Bio: https://medicine.umich.edu/dept/pmr/sean-r-smith-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

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/

Heather Jim, PhD,  is a senior member and co-leader of the Health Outcomes and Behavior Research Program at Moffitt Cancer Center in Tampa.  Today she walks us through ways to combat sleep issues related to chronic Graft vs. Host Disease.  Hopefully the tips here will help all of us get a better night's sleep.

Heather begins by walking us through the importance of sleep, and how that changes as we age.  Interestingly, 30% of the general population report sleep problems, but for transplant recipients, that number can rise as high as 60%. We cover some of the most common types of sleep issues, including sleep apnea, insomnia, and restless leg syndrome.

While there are sleeping medications out there, Heather explains Cognitive Behavioral Therapy for Insomnia, or CBTI.  While there are psychologists and social workers who specialize in CBTI, there are many practices we can all employ on our own, to stop sabotaging our sleep cycles.  This includes mobile apps, linked below in our show notes.

There are seven rules CBTI rules to help improve sleep:

1. Set aside an hour to wind down before bed (this includes turning screens off!)
2. Only go to bed when you start to feel sleepy.
3. If you can't fall asleep in 20-30 minutes, get up and do something boring.
4. Use an alarm clock to get out of bed at the same time every day.
5. Use your bed and bedroom only for sleep and sexual activities.
6. Limit naps during the  day, especially after 1pm.
7. Limit the time spent in bed to actual time sleeping.

Heather explains that good quality sleep is not only important for patients, but for caregivers as well.  Sometimes, transplant can be more stressful for the caregiver, and if they don't take care of themselves, it will harm their ability to help their patients.

Resources:

Shut Eye App: https://www.shuteye.ai/

Somryst App: https://www.somryst.com/

Calm App: https://www.calm.com/

Heather Jim's Bio: https://moffitt.org/research-science/researchers/heather-jim/

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/

Colorado's Ann Haehn and her daughter Genny are two truly special people.  Today, Ann takes us on their journey through Genny's transplant and subsequent battles with chronic Graft vs Host Disease.

After a very grim diagnosis, Ann and the rest of Genny's village found a doctor that felt he could get Genny through transplant at Colorado Blood Cancer Institute. During a long six-month pre-transplant process, Ann moved in with Genny and her kids.  Genny's new boyfriend (now husband) Josh was also a huge help as well.

After the transplant came 30 days of isolation, followed by 100 days of living in an apartment near the hospital.  That meant finding 130 days of child care, which Ann managed to do, with a lot of help from a lot of people, while she stayed with her daughter.  Then, two weeks prior to hospitalization, Ann lost her mom unexpectedly.

Ann speaks candidly about what it took to get Genny through transplant and recovery, cleaning up puke, watching the same movie over and over again when Genny kept falling asleep, laughing, crying, blogging, and even some wine for Ann at the end of the night.

Caregivers are expected to be stoic and talks about dealing with her emotions and being a human herself. This includes maintaining the mother-daughter relationship through the caregiver-patient one.

After transplant, Genny developed GVHD, which at first was a good sign because it meant the transplant was working.  Over time though, this developed into chronic GVHD, which affected Jenny's joints and ability to walk.  She sometimes needed a cane, walker, or wheelchair.

Before treatment, Ann promised Genny a trip to Europe.  And when she was well enough, the whole family went - with a wheelchair, IV bags, medication, and more.  You'll crack up as Ann tells you the hilarious moments of this trip.  Essentially, they found a way to do what they wanted to do, in spite of Genny's GVHD.

Ann talks about how far GVHD treatment has come, and how Genny's GVHD seemed to "level off" after about six years.  While the unpredictability of this disease can be frustrating, for most, brighter days are ahead.

Finally, Ann describes her experience as a caregiver in three words. "A sacred honor."

Ann and Genny's experience led them to create an organization called Genny's Hope, which has recently joined the Small Choices Foundation, started in fact, by one of Genny's nurses!  Links Below.

Resources:

Small Choices Foundation: https://www.smallchoicesfoundation.org/

Genny's Hope: https://www.smallchoicesfoundation.org/gennyshope

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/

Welcome to Marrow Masters Season 7, sponsored by Pharmacyclics and Jansen, and Kadmon, a Sanofi company.  This season we focus on long haulers – those who are dealing with chronic graft vs host disease.  We cover different treatment options.

We’ll cover some topics that aren’t always easy to bring up.

And we’ll cover the importance of taking care of not just your physical health, but your mental health as well.

Season 7 of Marrow Masters is out June 21st.  Follow our show for free on Apple Podcasts, Spotify, YouTube, or wherever you’re listening right now.  For more, visit the National Bone Marrow Transplant Link at NBMTlink.org.