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Chronic GVHD ~ Let’s talk about it!
Those of us who have received peripheral stem cell transplants (bone marrow transplants) know first hand what a rare and amazing gift it is to be given a second chance at life. But it can come with a few interesting challenges and adventures in the form of Chronic Graft Vs Host Disease (GvHD).
At this posting, in 3 months I’ll be 2 years post transplant. So far I’ve had two serious, but quickly controlled episodes of GvHD. I’m still on a very low dose of Tacrolimus (.5mg daily) for maintenance as a precaution. From routine blood draws there is indication of slight liver involvement from GvH and my kidneys aren’t delighted with continued meds to treat the liver. My awesome transplant doctor, who is very conservative in treatment, is monitoring everything and is not concerned. He feels we’ve struck a good balance right now and expects at some point for me to be fully off the Tacro. Not to jinx anything but right now I’m feeling healthy and energetic.
C-GVHD symptoms can range from mild to severe and affect every part of the body with side effects such as rashes, dry skin and eyes, joint pain, GI problems or organ damage. It’s routinely held in check with lotions, steroids and anti inflammatory medications.
What are your Chronic GVHD adventures and challenges?
What medications or treatments have worked for you?
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@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
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4 ReactionsHi @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.