Chronic GVHD ~ Let’s talk about it!

Hi, I have chronic GVHD, it has strongly expressed, thickened and scattled scars on the skin. the movement of funds has been restricted for the last 3 months. sometimes i have difficulty swallowing. My doctor gave me hope. Do you think it is impossible to defeat cGVHD?

Hello, @lanaluka I’m really so sorry to hear you’re having issues with chronic GvHD. Very few of us stem cell transplant patients get away without doing battle at some point with our new immune system. Or I guess, it’s our new system doing battle with us…it’s in control. We’re lucky to have this second chance at life but it can come with challenges for sure.

Scleroderma of the skin is sadly one of the more common side effects. It can really become uncomfortable with the tightness of the skin, preventing movement and flexibility.

What I’m understanding from your post is that you’re having digestive issues such as constipation for the last 3 months? Did the difficulty in swallowing happen around the time?
Both of those symptoms can be associated with GvHD. Did your doctor feel that it is not related?
Has your doctor discussed treatments for your skin such as taking an immuno-suppressant like Jakafi or prednisone? They are the standard care for C-GvHD and could possibly help your digestive issues from getting worse.

When did you have your stem cell transplant?

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.

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!

thank you for your reply. I try to convince the doctor but .... I left my country because I could not be treated for leukemia there. I am currently in France. I do not know what to do. .In which country are you and in which clinic?

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?

I did the transplant in Turkey. February 6, 2018. I lived in Georgia (Tbilisi) ... Turkey needed a lot of money for further treatment. We sold everything we had. So my mother and I left Turkey and headed to France in the hope that there would be more opportunities here and the treatment would be free too. But ... we do not have access to health care yet. The documents are under review. I think that is why they do not hold hands and die because of lack of money. I have been restricted in movement for 3 months and I am suffering from depression.

Hi @lanaluka, it’s unimaginable all that you have gone through! I see you as brave, strong and quite amazing! Your world has flipped upside down with the traumatic changes you’ve had over the past few years. It’s no wonder you’re feeling depressed. I’m sure you’re also experiencing a lot of frustration, stress and anxiety over your situation.

You have undergone the difficult and arduous treatments for leukemia and stem cell transplant. You and your mother have sold everything and moved to a foreign country in hope of finding a better life and follow-up treatment for your transplant care. Did you have to learn a new language too?
How are you and your mom adapting to your new living arrangements? Are there any other family members in France near you?

Here is my thought. Since your swallowing difficulties are not frequent, they may not be GvHD at all. It could be your depression and anxiety causing the symptoms. If it was C-Gvhd, your symptoms would be progressively worse and steady. But that doesn’t sound like the case.

If everything else is good, you might not be having any new Gvhd. That would be very positive news. It would give you time for the documents to be processed until you can get health care instated.

Are you having any other health problems right now besides the scleroderma?

@lanaluka, I just read your post, and I commend you for the strength that you have demonstrated as you attempt to get medical care. I am a liver and kidney transplant recipient and I have an idea of the fears and uncertainty that you are experiencing. I think that as transplant patients we all more aware of the risk that we face. I am glad that you have met @loribmt. I also hope that you will find comfort and hope in her response to you.

I am thinking about you, and I hope that you continue to live with focus on one day at a time. while remaining hopeful that your records will soon be processed.

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?