Chronic GVHD ~ Let’s talk about it!

Posted by Lori, Volunteer Mentor @loribmt, Mar 18 12:46pm

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?

@loribmt

Hi Cathy, I was just reading over some of your other discussions about your poor sister and all that’s been going on in her life. With her diabetes, kidney failure and now all the agony of these digestive issues she must be feeling so miserable! A hemoglobin of 5.8 is super low! I’m betting she felt like moving at a snail’s pace!
You’re very loving and generous to be so dedicated and committed to her health and medical care. Caregiving can be pretty stressful so I hope you’re also taking time for yourself to decompress!

Just a quickie…don’t worry about being too wordy! Think of us as all sitting around the kitchen table with a cuppa in the morning. In my group of family and friends we’re never economical with words. A good chat is how we help each other. It’s all good!

With your sister’s unexplained possible blood loss resulting in a low Hgb level, did she by any chance have her Covid Vaccinations? There are discussions in our forum with members who have had the virus or vaccines and are experiencing similar symptoms with low hemoglobin or low iron levels in their blood. Most have had tests and scopes to determine if there is a slow blood leak somewhere only to find it is related to the vaccine. I’m certainly not implying that this is her situation but it might be something worth mentioning to her PCP
https://connect.mayoclinic.org/discussion/iron-depletion-in-blood-and-covid-vaccine/?pg=7#comment-625176
I’ve not had any gall bladder problems personally. But the test your sister’s doctor mentioned is called a HIDA scan. I posted a link from Mayo so you can see what that’s all about.
https://www.mayoclinic.org/tests-procedures/hida-scan/about/pac-20384701
Do her doctors suspect the gall bladder for her stomach and digestive issues?

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Doctors haven’t mentioned gallbladder. Scans show her gallbladder not an issue. I’m reading different information even when GB doesn’t appear to be an issue. Her symptoms align with GB symptoms. If GB doesn’t look compromised in a scan can it still play a role in digestive symptoms?

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@cathyherman

Doctors haven’t mentioned gallbladder. Scans show her gallbladder not an issue. I’m reading different information even when GB doesn’t appear to be an issue. Her symptoms align with GB symptoms. If GB doesn’t look compromised in a scan can it still play a role in digestive symptoms?

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Hi Cathy, I only mentioned Gall Bladder because you brought it up in your previous post with the comment of the doctor saying something about a HIDA scan, which checks for potential issues with the GB.

But your sister has since been diagnosed with a pancreatic enzyme deficiency which can certainly explain her digestive issues. It can cause a host of serious gastric symptoms with pain, weight loss, diarrhea, etc..

I know you are very concerned for her welfare but it doesn’t pay to explore the GB issue further as the scans showed nothing amiss there. The signs are pointing to her pancreas. So give the new medication to correct her enzyme deficiency a chance to work. I know our first reactions are usually to head to the internet to check for symptoms but that can be a detriment too and often adds unfounded worry.
It sounds to me like her doctors are zeroing in on your sister’s problem and are taking her situation seriously. So give yourself a little break from all the stress and let the medical team do the worrying for you.

Is your sister in the hospital at this time?

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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?

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@lanaluka

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?

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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?

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@loribmt

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?

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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.

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@lanaluka

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.

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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!

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@alive

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!

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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?

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@lanaluka

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.

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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?

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@loribmt

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?

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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.

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@lanaluka

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.

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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?

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@lanaluka

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.

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@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.

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