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

Hello Linda, welcome to Mayo Connect. I’m glad you found our discussion on GvHD. Being the caregiver for someone with GvHD is a bit of a roller coaster ride for both of you, isn’t it?! Your husband’s a very lucky man to have you by his side to help weather one of the most challenging times of his life.
Congratulations on his one year Re-birth day. That’s a huge mile stone! It’s reassuring to hear he has such a great disposition throughout his hurdles with GvHD. Unfortunately, in all various shapes and forms, it is a pretty common side effect with our gift of a second chance at life.

It’s ok to be on Tacro and the other meds for a longer period. I’m 2 years, 2 months past my 2nd anniversary and just now tapering off the Tacro. It has kept me from the worst of any more GvHD events for which I’m grateful to my transplant doctor for taking this conservative approach. Eventually, the new immune system will acclimate to our bodies and calm down on its own. But in the meantime, prednisone is often the wonder drug to stomp out the little fires that pop up. I’m sorry to hear he’s having to take insulin right now but most of these side effects diminish or disappear when he’s off the prednisone.

If you don’t mind my asking, what led your husband to needing a stem cell transplant?

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Thank you. Your comments are reassuring. He was diagnosed with MDS Leukemia. On Christmas Eve 2019. It’s been crazy ever since. We stayed in Rochester for 4.5 months while he was undergoing the transplant. But thank god he is doing great.

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@ksmnana

Thank you. Your comments are reassuring. He was diagnosed with MDS Leukemia. On Christmas Eve 2019. It’s been crazy ever since. We stayed in Rochester for 4.5 months while he was undergoing the transplant. But thank god he is doing great.

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I’m happy to have brought a little reassurance. Leukemia is a wild ride for sure, no matter which variety! I had AML and so far so good with the transplant doing its job to keep that arrested.

Mayo-Rochester is my Mother-ship too! Spent 4 months there as well and can’t imagine better care anywhere.
So rest assured, he has a great team and they’ll have his (and your) back forever. I was told repeatedly that ‘we’re married for life’ with our transplant team. I’m over 2 years out and still connected with follow up appts and communications with my doctor and my team. They are thrilled with every victory and ready to jump to the rescue for any issues.

Knowing what he’s gone through, I share your happiness that your husband is doing so well. When people ask me what it was like I always say, “It’s definitely not a walk on the beach!” 😉

When is your husband’s next follow up in Rochester?

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@loribmt

I’m happy to have brought a little reassurance. Leukemia is a wild ride for sure, no matter which variety! I had AML and so far so good with the transplant doing its job to keep that arrested.

Mayo-Rochester is my Mother-ship too! Spent 4 months there as well and can’t imagine better care anywhere.
So rest assured, he has a great team and they’ll have his (and your) back forever. I was told repeatedly that ‘we’re married for life’ with our transplant team. I’m over 2 years out and still connected with follow up appts and communications with my doctor and my team. They are thrilled with every victory and ready to jump to the rescue for any issues.

Knowing what he’s gone through, I share your happiness that your husband is doing so well. When people ask me what it was like I always say, “It’s definitely not a walk on the beach!” 😉

When is your husband’s next follow up in Rochester?

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He has his appointments on the 25,26&27 of October. It’s his 1st birthday check up. 🥳 we definitely agree with our team. Is so great to know that 24/7 you can get help. Everyone on Carlton 9 is beyond fantastic.

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@ksmnana

He has his appointments on the 25,26&27 of October. It’s his 1st birthday check up. 🥳 we definitely agree with our team. Is so great to know that 24/7 you can get help. Everyone on Carlton 9 is beyond fantastic.

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Think how far he’s come in this past year! It’s a huge milestone. And when he walks into the transplant exam room this time to meet with his team, he’ll be walking in as a pretty healthy man! It’s an awesome feeling! I hope he gets all good news! 🤗
I’m going to be there the week before your husband…too bad the planets didn’t align, we could have met in the Charleton piano lounge for a quick hi. 😉

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@loribmt

I was bummed to find out those books are already being written and someone told me CSI has had an episode or two with the same plot. LOL.
You’re so right, with time and research maybe there will be a future for stem cell transplants for more autoimmune diseases. Before that can happen, side effects of the transplant will need to be less dramatic. Now, however, it is not commonplace simply because it is grueling and comes with its own challenges.

Interesting, we share another drug…Ursodial. I’ve been taking that since transplant as a prophylactic to prevent liver issues.

Getting a second chance isn’t without some trade off is it? We’ll never fully be 100% of our former selves but it beats pushing daisies up from the underside. 😉

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Well, I did some research. There’s only been a couple of reported cases involving DNA oddities in crimes, which were due to stem cell transplant. A number of investigative medical journal articles on it though…warning criminal investigators of the potential. I bet Sir Conan Doyle would have been all over it if he was living today!

Here’s a link to an article about doctors studying how long it took for a man’s cells and DNA to change…even his sperm DNA changed to that of his donor! Think about the ramifications of that! https://www.nytimes.com/2019/12/07/us/dna-bone-marrow-transplant-crime-lab.html

When I first started taking ursodial it caused hair loss, but not nearly as bad as Tacrolimus. I adjusted and doesn’t seem to affect me…hopefully it works well for us both! Definitely trade offs and certainly life is unpleasant sometimes, but as you say, we wouldn’t be here today without our transplants!

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I have a question that maybe someone can answer. Has anyone had advice from a nutritionist on what foods to eat or to avoid that could reduce the occurrence of GVHD? Or is diet totally unrelated to GVHD? I have only had mild skin issues and high liver function test results, which they think were caused by GVHD, but I would like to avoid it as much as possible. 😊

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@edb1123

I have a question that maybe someone can answer. Has anyone had advice from a nutritionist on what foods to eat or to avoid that could reduce the occurrence of GVHD? Or is diet totally unrelated to GVHD? I have only had mild skin issues and high liver function test results, which they think were caused by GVHD, but I would like to avoid it as much as possible. 😊

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Hello! I’m a solid organ transplant recipient. So, I’m sure @loribmt and other stem cell recipients can offer you more specific advice to meet your needs. I know on my transplant team we have two excellent nutritionists who have always been very happy to answer my questions.

Also, I’m working with another transplant recipient on Connect to start a Cooking for Transplant Recipients Culinary Arts webinar series. We are hoping that both solid organ and stem cell transplant recipients will join. Here’s the link for more info-https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

I’ve been researching diet and meal plans/recipes to share with participants in the webinars. Last night I happened to be researching stem cell diet resources. I found a lot of resources just by doing a Google search. And, I did also research on diet tips for GVHD, as I know it is a huge concern. I’m putting together a resource list with hyperlinks which I’d be happy to share.

Diet and exercise are certainly key to helping become and stay healthy following our transplants.

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@athenalee

Hello! I’m a solid organ transplant recipient. So, I’m sure @loribmt and other stem cell recipients can offer you more specific advice to meet your needs. I know on my transplant team we have two excellent nutritionists who have always been very happy to answer my questions.

Also, I’m working with another transplant recipient on Connect to start a Cooking for Transplant Recipients Culinary Arts webinar series. We are hoping that both solid organ and stem cell transplant recipients will join. Here’s the link for more info-https://connect.mayoclinic.org/discussion/transplant-culinary-arts-zoom-sessions/

I’ve been researching diet and meal plans/recipes to share with participants in the webinars. Last night I happened to be researching stem cell diet resources. I found a lot of resources just by doing a Google search. And, I did also research on diet tips for GVHD, as I know it is a huge concern. I’m putting together a resource list with hyperlinks which I’d be happy to share.

Diet and exercise are certainly key to helping become and stay healthy following our transplants.

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Thank you for providing this information. Please sign me up for the monthly Zoom calls. I would love to get your resource list related to diet tips for GVHD. Thanks again!

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@edb1123

I have a question that maybe someone can answer. Has anyone had advice from a nutritionist on what foods to eat or to avoid that could reduce the occurrence of GVHD? Or is diet totally unrelated to GVHD? I have only had mild skin issues and high liver function test results, which they think were caused by GVHD, but I would like to avoid it as much as possible. 😊

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I’m having stone-aged internet issues this week which is really impeding my responses and testing my patience! LOL You posed a really great question so I’m happy to see @athenalee pop in with answers because I was going to tag her into this conversation! She’s a guru when it comes to health and well-being of our bodies through foods in our diets!

A while back I discussed this with my transplant team. What can be done to avoid GvHD of the liver (and in general) The only GvHD I have right now is a slight indication of “potential” liver issues because of minor elevations in my liver function numbers, similar to yours.
A lot of our GvHD is simply hit and miss. It’s whatever our immune system decides needs fixing and starts these ‘little fires’ in our bodies that have to be stomped out with prednisone or other anti inflammatory meds. So whatever we can do to avoid inflammation is one proactive thing we can do to avoid getting those new cells all riled up…such as avoiding any illness, avoiding sun, toxins, etc.

There are some research discussions regarding Choline in the diet. It’s being studied for potential issues within the gut biome which can cause inflammation, which in turn may cause GvHD. But it’s not proven and most of these foods on the Choline list are more important to our overall health than any speculation.
They include eggs, fish, beef, soybeans, wheat germ, chicken, turkey, cruciferous veggies, almonds, dried beans, cottage cheese…you get the picture!
https://gvhdhub.com/medical-information/the-effect-of-choline-rich-diet-on-gvhd#:~:text=The%20study%20highlights%20the%20impact%20of%20diet%20on,and%20Th17%20cells%20activation%2C%20which%20stimulates%20GvHD%20progression.
So, the talk with my team focused more on what foods are GOOD for the liver rather than avoiding the Choline rich foods. And because some of the good foods contain choline, it’s really a matter of keeping a healthy body through diet, exercise and water intake.

There are liver specific foods which help promote the health of the organ.

Eating the Rainbow ~ fresh veggies and fruit filled with antioxidants
Oatmeal
Broccoli
Coffee
Green Tea
Water
Almonds-nuts
Spinach
Blueberries
Herbs & spices

AVOID
Fried foods
Too much sugar
Alcoholic beverages
Unhealthy snacks
Acetaminophen (on a daily basis)
https://liverfoundation.org/for-patients/about-the-liver/health-wellness/nutrition/

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@athenalee

Well, I did some research. There’s only been a couple of reported cases involving DNA oddities in crimes, which were due to stem cell transplant. A number of investigative medical journal articles on it though…warning criminal investigators of the potential. I bet Sir Conan Doyle would have been all over it if he was living today!

Here’s a link to an article about doctors studying how long it took for a man’s cells and DNA to change…even his sperm DNA changed to that of his donor! Think about the ramifications of that! https://www.nytimes.com/2019/12/07/us/dna-bone-marrow-transplant-crime-lab.html

When I first started taking ursodial it caused hair loss, but not nearly as bad as Tacrolimus. I adjusted and doesn’t seem to affect me…hopefully it works well for us both! Definitely trade offs and certainly life is unpleasant sometimes, but as you say, we wouldn’t be here today without our transplants!

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My husband and I read that article too! It came out within the first year of my transplant and had our eyebrows raising!! Haha. I wondered what my future would hold. Well, here I am 2 years out and nothing outward has happened. 😂. There are still so many unknowns!!

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I have had GVHD off and on for the last five years. I was following varied diets during this time, including vegetarian and then vegan. I don’t see a correlation between diet and GVHD flair ups. We have a new immune system that is doing its own thing. No rhyme or reason most of the time. I personally focus on healthy diet and use whatever meds my oncologist prescribed for GVHD.

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@alive

I have had GVHD off and on for the last five years. I was following varied diets during this time, including vegetarian and then vegan. I don’t see a correlation between diet and GVHD flair ups. We have a new immune system that is doing its own thing. No rhyme or reason most of the time. I personally focus on healthy diet and use whatever meds my oncologist prescribed for GVHD.

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Thank you for this information about what you’ve discovered between the diet and GvHD! I really couldn’t correlate anything either from my diet. I try to do everything right. Though if I do cheat and have some Sun Chips, I find the salt irritates my tongue which never happened before.
But the other GvHD issues are so capricious, they’re obviously left to the whims of our new immune systems.
In a previous post you mentioned recently having scleroderma which is new for you. Do you mind sharing where this is occurring? Does it have anything to do with sun exposure?

I’m 2 weeks from being totally off Tacro and then my other meds so I’m concerned that I’ve been protected from some GvHD issues that might arise now that I’m going to be off. I’m always cautious in the sun but am curious as to skin issues and how they begin.

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