Marrow Masters

Season 14 Trailer: The Parts of cGVHD We Don't Often Talk About

Episode Notes

Season 14 of the Marrow Masters podcast produced by the National Bone Marrow Transplant Link will be out soon, focusing on the parts of chronic graft versus host disease we don't often talk about. We'll cover male and female sexuality, and atypical presentations of chronic GVHD. We'll share a patient and caregiver perspective related to chronic GVHD and take a deep dive into the psychosocial and emotional struggles of those with this rare and sometimes debilitating disease.

Guests include Dr. Doris Ponce and Dr. Jose Flores Ramirez of Memorial Sloan Kettering Cancer Center in New York, Dr. Hermioni "Hermi" Amonoo of Dana Farber Cancer Institute in Boston, and Dr. Oluwatosin Goje of Cleveland Clinic. We also speak with JR Brandt of Montana, an inspiring ALL Survivor, and Angie Giallourakis, caregiver and founder of Elephants and Tea.

Season 14 of the Marrow Masters podcast will offer survivors insight, compassion, and answers to infrequently discussed subjects. The Marrow Masters podcast is produced by the National Bone Marrow Transplant Link and sponsored this season by Incyte and Syndax. Look for all six episodes coming soon on Apple, Spotify, YouTube, or wherever you're listening right now.

And for more, visit the National Bone Marrow Transplant Link at nbmtlink.org or follow the link below.

Episode Transcription

Don't think that any symptom is something silly, but it's important to bring it out to the clinician because there could be ways or tools that we could provide to patients to make them feel better.

Remember to take care of yourself.

I remember a few years back, I had a patient with vaginal pain, a lot of sexual dysfunction and to manage her expectations, I said, "What do you hope to achieve from all this treatment?"

She said, "For two years, while I was going through my therapy, my husband stood by me. And I just want to feel better to be intimate again with my husband."

Don't be embarrassed to ask your physician for a handicap placard, especially if you have joint and mobility issues.

Don't feel like, oh, those are only for people with wheelchairs. We have an invisible disability. So, I would go for that. I've had them for several years. It's definitely beneficial. You know, if I see somebody that's worse off than me, I'll gladly give up my spot, but when I'm going grocery shopping and there's a foot of snow on the ground, it certainly is a big, huge help for me.

We were informed that there may be occasions when his body will experience some type of graft versus host. We were told that a little graft versus host is a good thing. But we had absolutely no idea what it was going to look like, how it would impact him or us.

He started experiencing some muscle pain, cramping, uncontrolled movements with his hands.

Every part of his body was tested. And what they found was that throughout his body, his fascia was inflamed.

There are different kinds of professional help that one can pursue. Seeing a specialty mental health clinician like myself or a social worker or a therapist, there are some individuals, that's a really critical aspect of their toolbox to learn the skills that they need to thrive. Another important component is your social support and maintaining healthy relationships.

Sometimes I tell the grandparents that I work with that, the best antidepressant that I have would not replace the joy that a grandchild would bring to you.

And for more, visit the National Bone Marrow Transplant Link at nbmtlink.org or follow the link in our show notes.