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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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Hi Pam, This GVHD discussion seems to be one of those posts that got buried in time! Thought I’d drop in this morning to see how you’ve been since we last spoke! You and I are about the ‘same age’ in our BMT journey.
How has your long-term recovery been? Has there been an improvement in your GVHD Symptoms?
I know having those tests done aren’t the most pleasant things, but they go quickly. If they can help bring a resolution to your colitis issues, that would be great. Wishing you all the best! Keep me posted, ok? Hugs.
ln hospital after being diagnosed with colitis. Taking on the GolLYTELY(go-light) at this time, I was told they're going to go down my mouth and into rectal area make sure I don't have GVHD. Gven it to Jesus Christ.
Thank you so much for sharing our story ❤️ sorry for your brother 😔 There is nothing greater in the world than this pain. Luka especially loved life .... too many kind people were involved in saving him and it should not have happened that way. It was as if the chain of goodness of the universe had been broken. It was as if I had ended my life with him.
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2 ReactionsThank you for sharing Luka’s story with me. His passing has really touched me to the core. At 26, he was far too young to leave this world.
After reading about the heroic lengths your friends and family went through to support Luka, I’m filled with respect for the depth of love and sacrifice you’ve all made in trying to help him fight his battle.
I lost my brother to cancer when he was 27. (I was 14) I’m almost 68 now and not a day goes by without my thoughts turning to him. He was my best friend. So I know your bother lives on in a large area of your heart. He will be with you always. Hold onto the positive memories and know he loved and appreciated everything you did for him.
My thoughts and prayers are with you and your family. I’m always here if you feel you want to talk about anything. 😔
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2 ReactionsThank you very much for these words 😔
Luka was 26 years old, an amazing boy. With lots of goodness. He was 23 years old when he was diagnosed with this disease. We fought a lot, friends, family. We collected a large sum of money and took it to Turkey for treatment. We fought for 3 years ... In August we could not physically cope with the financial stress and we went to France to get free help 😔 Unfortunately it turned out that Luka's GVHD had gone too far and France could not do anything to keep Luka alive 😔We were devastated by the loss of Luka 😭
Oh dear, Lana! This isn’t the news I expected to hear today. I was so hoping your brother was improving and getting the help he needed. My heart goes out to you and your family on this tragic loss. This is just very sad and heartbreaking.
Luka had been through so much the past couple of years with his stem cell transplant. If you feel like sharing your brother’s story with me, I’d love to learn more about him. How old was he?
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1 ReactionHello, My brother, Luka wrote to you ... he unfortunately left us on October 2 🥺
Good morning, Lana. It’s been a few months since we’ve chatted and I’d really like to know how you’re feeling. I know you’re having issues with GvHD and when we spoke, you were not receiving any treatment.
Were you able to get into a health system in France after your move? Are your swallowing difficulties improving. And how about you and your mom, have you adapted to life in a new country?
Good morning, Pam! Thought I’d drop by to see how things are in your corner of the world. In a month I’ll be at the 2.5 year mark after my transplant and right now….shhhhh…things have settled down to a predictable level. I’m finally off all my meds except for the daily antiviral.
Have to be honest, I was really reticent to start the Tacrolimus taper again after 2 failed attempts earlier in recovery. My doctor kept me level for another year just to make sure and then we started a sloooow taper a few months ago. 3rd time was a charm! Pfhew. Felt a bit strange for the first week not being tethered to my pill box. Hah, didn’t take long for me to turn it into a bead box though.
This is a slow and steady challenge for us. How are you feeling? Any more GvHD flairs? I hope you’ve been able to return to work. Is your fatigue improving?