Connect
← Return to Chronic GVHD ~ Let’s talk about it!
Discussion
Chronic GVHD ~ Let’s talk about it!
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Nov 15, 2022 | Replies (68)Comment receiving replies
Thanks for your reply. I have difficulty swallowing periodically, and not constantly. The doctor does not even consider any kind of treatment unfortunately. I did not receive the Jakafi.. I was taking prednisolone from the transplant until June. Now that too has stopped me. I did the transplant 2 years ago. I think there is a chance of survival, but doctors do not see it.
Replies to "Thanks for your reply. I have difficulty swallowing periodically, and not constantly. The doctor does not..."
There is always a chance of survival! There is always hope! You’ve been through the worst already with the treatment for leukemia and the transplant. Having GvHD should not mean there’s no hope. Most of the time it is treatable with the right medications. To have made it this far shows that you are strong and determined! I’m so sorry you’re not getting the good follow through for your transplant.
Was the prednisone helping your symptoms while you were taking it? Why did the doctor stop this prescription? It’s a powerful medicine to help combat GvHD but it is not tolerated by the body long term. Therefore I can understand if it was time to stop the prednisone.
But there are so many other medications that prevent the inflammation which causes GvHD. it is important for you to find the right doctor to continue your treatment.
I just read your reply to @alive regarding that you now live in France. Do you have access to healthcare there? Is that where you received your transplant?
Is it possible for you to sit down with your current doctor to discuss your health concerns? It is horrible if they have now decided to no longer treat you, because there are more medication options!
@alive and I are both in the USA and have gone to Mayo Clinic for our stem cell transplants. There is a Mayo affiliated hospital in London but I’m not sure if that helps you.
If your transplant doctor won’t help you, can you contact a hematologist near you? With your leukemia history you should be having follow up blood work appointments anyway. If you could have that doctor recommend a hospital or clinic who does transplants. You could get a referral for a second opinion with another transplant doctor to help you get on the road to recovery.
How is your health otherwise? Are you active and energetic?
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?
Connect
I hope your doctor will be able to come up with a treatment plan! I have just received an approval from my insurance for Jakafi and should start it in the next week or so. I have a pretty extensive skin GVHD. You should ask your doctor for Jakafi. Don't give up and don't let your doctor give up on you either!