Chronic GVHD ~ Let’s talk about it!

@marylou329, how did the fibroscan go? How are you doing on prednisone and the antifungal?

Hello-
I see the comments are from several years ago but I'm just joining the group.
I just had my 4 year post analogous stem cell BMT transplant. I have cGVH -my transplant doc characterizes as severe. I have the sclerosing/fibrosing scleroderma like cGVH as well as oral, ocular, ?GI ?neuro and have had numerous skin cancers. I also was diagnosed with stage IIB cervical ca during surveillance. I'm on Jakafi, Rezurock, Axitalimab, photophoresis and now ibrutinib. Anyone on a similar journey? No lymphoma relapse but limited by restricted mobility, probable GI motility disorder, and an inflammatory arthritis impairing my hands.
I think otherwise I'm ok (wink) but would like to know if there are others facing similar challenges. Thank you

Hi @esp117 Oh golly, my friend. My heart goes out to you. We enter into our BMTs filled with hope for a positive 2nd chance at life. When we receive someone else’s immune system there can be some serious challenges when getting our bodies (the host) and our stem cells (the graft) to learn to play amicably together. Small amounts of graft vs host disease can be our ally in our continued fight against cancer. But the overzealous nature of our new immune system, if not kept in check can turn against us.

Because of continued research and modifications in the world of BMTs, there are recently newer protocols for BMTs to help avoid the more severe side effects. With interventional treatments given in the early days post BMT, GVHD tends to be minor and events are “incidental”…popping up like little fires to be stomped out. A burst of steroids or treatment and eventually the little fires stop as the new, adaptable, immune system learns the proteins in our bodies are not always the enemy.

Unfortunately, there are some patients, for whatever reason, who continue to have chronic gvhd issues. And I’m so sorry to hear that this is happening with you. I’d like to introduce you to @deb913 who has shared her story here: https://connect.mayoclinic.org/discussion/axatilimab-for-chronic-gvhd/

Also, the National Bone Marrow Transplant Link (nbmtlink.org is a nonprofit organization dedicated to serving individuals before, during, and after a bone marrow or stem cell transplant. I know they have some excellent podcasts and information regarding GVHD.
https://www.nbmtlink.org/
May I ask how soon your gvhd symptoms started after weaning from your immunosuppressant like Tacrolimus? Were you treated initially with steroids?

@loribmt Thanks so much for the reply and the resources.
I went directly from acute skin GVH to GVH with mult. skin cancers before other manifestations developed. I initially was treated with steroids. I was on tacrolimus for at least a year-sorry to be less precise, it's been a long 4 years. I became aware of different issues long before they were officially diagnosed-more diagnoses is not a good thing, but validation is. What's been hard for me is with each new problem, I initially grieve the loss, accept, and try to re-frame what normal means. I try to conceptualize positive ways to live in that new normal...but then, another shoe drops-and losing the ability to visualize what a new future "normal" might be is hard. I try to accept it's just a big unknown.

I also keep acquiring more and more docs. and as the list grows, problems get subdivided as being under someone else's domain. It feels like there is less cross pollination of ideas. Maybe it's just me, but it sometimes feels like the fact that there is one person behind all the parts gets forgotten.``

It is what it is. I work at appreciating that I'm here!``Thanks for your replies and the hugs.

Good morning @esp117 Your fortitude in coping with this multifaceted C-gvhd is on a superhuman level. As someone who had my own experiences with gvhd I know you’re not wanting to hear positive accolades for strength. Because I’m sure there are days you don’t feel strong at all. I felt like a poser most days. But I can tell you, it takes a special person to be able to meet each new challenge head on with grace and dignity and then accept, adapt and move on. So please accept my empathy and support in how you’re re-framing each situation and looking for a positive paths forward.

I can also empathize with having several specialists working with you and trying not to feel lost in the medical maze. Are your doctors involved with the transplant team and specialists in graft vs host? Were you in a larger research/teaching hospital for your BMT?

I remember putting up with GVHD after an allogenic stem cell transplant. I wouldn’t say my case was severe but it wasn’t too far from being it. Over half of my upper body had the GVHD rash on it, I look more like cheetah or leopard than anything, maybe I’m trans-species now?
I also had GVHD involvement in my liver too, that’d show up in my labs mostly. I also suffered from GI symptoms, my guts would hurt and I’d get something almost like diarrhea. I’d say the rash was the worst, it’d show up the most where legs and arms attach to your torso. You have to be careful with that rash, if it gets too severe you can lose mobility of joints. I had this transplant 15-16 years ago so things may have been different, probably not a whole lot. Getting the immunosuppressant drugs shakes in the most important thing, then they do a lot treatment with steroids for symptoms. For the rash they’d give me big tubs of steroid that you’d slather on, your clothes would stick to it, they sucked. I had GVHD for over 2 years and then that was it, it totally stopped. A little bit after 3 years post transplant I relapsed bigger than shit. I had a tumor in my sacrum crush all the nerve roots to the muscles below my waist, I couldn’t walk anymore and was confined to a wheel chair. Things really got exciting then, the transplants I had before were nothing compared to what was coming for me.

@loribmt I'm sorry for the delay writing back, but thank you for your reply and for the hugs and reactions. The empathy and support are priceless. I find it particuly tough fighting invisible battles because I haven't had one person/or a group of persons to bear witness to the past 7 years. That makes all of your acknowledgements/validations so very powerful.

I am at a large, highly ranked Cancer research/teaching hospital- but many of my subspecialists are through partner institutions and don't seen to have special knowledge re GVH. Often docs are stretched too thin without adequate support..but that's just the state of health care. I'm trying to learn how to live on what feels like the fringe of medicine...

Thanks for providing a safe place to vent, with people who understand.

I'm sorry-ugh. My heart goes out to you