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Severe GVHD of the Gut
Hi All,
I just wanted to reach out and see if anyone has had any experience with severe GVHD of the gut. My boyfriend is coming up on a month now being back in the hospital dealing with it (currently at day 76 post transplant) and while we have seen improvement I couldn't help but google it and I am terrified of the outcome. He has been on steroids which they have started to lower because they didn't seem to help much and he is now undergoing photopherisis treatment. He is having three treatments a week (will have his fourth today) we have been told we may not see improvement till the 10th treatment which seems so far away. Even though the diarrhea has slowed and there is little to no bright red blood in his stool (compared to before when it was just pure bright red blood) and he is on TPN gaining back some of the weight lost, I am still incredibly nervous. Would be interested to hear if there has been anyone else who has gone through this.
Thank you,
Krista
I just wanted to reach out and see if anyone has had any experience with severe GVHD of the gut. My boyfriend is coming up on a month now being back in the hospital dealing with it (currently at day 76 post transplant) and while we have seen improvement I couldn't help but google it and I am terrified of the outcome. He has been on steroids which they have started to lower because they didn't seem to help much and he is now undergoing photopherisis treatment. He is having three treatments a week (will have his fourth today) we have been told we may not see improvement till the 10th treatment which seems so far away. Even though the diarrhea has slowed and there is little to no bright red blood in his stool (compared to before when it was just pure bright red blood) and he is on TPN gaining back some of the weight lost, I am still incredibly nervous. Would be interested to hear if there has been anyone else who has gone through this.
Thank you,
Krista
Best Answers
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Krista
I went back into hospital on about day 32 with gut GVHD and was there for about 25 days. I send all my best wishes to both of you as my wife and I found that period the hardest part of all of my treatment. Like your boyfriend the steroids did nothing to help me. I never received photopheresis but I am aware of plenty of people who have received it for various forms of GVHD with positive results and I know there are others on this forum who can talk about that more.
I was eventually treated with a drug called Infliximab, which is also used for Crohns and it did clear up. Having shown no sign of getting better for nearly three weeks once it started to improve it did get better quickly and I have had no problems since, nearly 3 years later.
I hope you see some signs of improvement soon and that he can then focus on the rest of his recovery.
All the best
Tony
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Hi Krista,
I can't speak about GvHD of the gut but I did have photophoresis for GvHD of the skin and it did work in my case, but it took some time to see some improvement and was probably around the 10 cycles you mention. I had it fortnightly at first but the frequency dropped off when some improvement was seen.
I didn't find the photophoresis treatment itself too bad, just time consuming, so hopefully your boyfriend is tolerating it well too.
I've learnt not to trust Google as it can be more frightening than reality, but hopefully Tonys response is reassuring that it can be made better and fingers crossed it improves soon through the photophoresis.
All the best,
Steve -
Hi Krista,
My boyfriend had severe gvhd of the gut, that was his main trouble since transplant and like you I googled it and always read the worst! I also used this forum which helped me, as I was literally besides myself.
It started about two months after transplant he was unable to eat lost so much weight I think he was nearly 6stone, I was besides myself trying everything possible to make him eat! He spent a long time in hospital, on a high dose of steroids, had ECP and a lot of other drugs which I can’t remember now. I never thought it was getting any better, then one day it improved and he improved in himself. He’s now 13 months post transplant, his gut still flares up from time to time especially when he eats different foods but he weighs the most he has done since before transplant. He’s now off steroids and they are reducing his immunosuppression. And we just had are first holiday since (not abroad but it was a holiday)
The only advice I have is find something, anything that he might enjoy eating my boyfriend only wanted to eat plums & I was worried that would upset his stomach but as long as it started him eating again I didn’t care & slowly but surely we got there!
He is still having the ECP alternate weeks as there are still signs of chronic gvhd!
Hope this helps
X
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Hi Krista,
Just wanted to extend a huge hug to you and your boyfriend. As Tony says, gut GvHD was the absolute worst part of the whole process for me. I went back in for 47 nights from Day 53 to Day 100, with TPN for 30 days. I found it a very difficult time. My advice would be to ask your medical team about mesenchymal stem cells. This is what finally cracked it for me. It was a slow road but it is just that little kick that your boyfriend’s system needs, and then a steady build up from there.
I am with everybody else, Dr Google is not the place to go. I distinctly remember reading it during this phase and convincing myself I was a goner. But I wasn’t.
Keep hanging in there and I hope mesenchymal stem cells are something your boyfriend can have a go at.
All the best,
Greg -
Hi Krista,
I am so sad to read that your boyfriend is still in hospital. 47 nights was enough for me but at pushing 60 he is one tough cookie. I would take great comfort that he is putting some weight back on and that he is taking on board small food stuffs - this is a step in the right direction, no matter how small. I think all you can do right now is live in the moment, one day at a time. I remember the desperation I felt when there didn’t seem a way out of getting out of hospital, but keep hanging in there, take any scrap of hope you can, and keep clinging on with all your might. Unfortunately, sometimes this happens post-SCT. I remember chatting to the nurses when I was in, and they said this length of stay can happen quite a lot. So keep hanging in there, as easy as it is for me to write that, and as hard as it is to live it in practice.
Sending you loads of warm wishes and please keep us updated.
Greg
Answers
My boyfriend has now been back in the hospital for 8 and a half weeks, still on steroids though is now down to 1 mg per kg versus the 2 mg per kg they started him at. He is having ECP treatments three times a week. During this time his EBV levels increased so they gave him Rituxinmab, he has had two of those treatments and his levels have gone down and will likely have another tomorrow. We have seen small improvements, but it has been tough to stay optimistic over the past two months, especially since no one is able to provide us with any sort of timeline. He has managed to put some weight back on, is on TPN and is currently eating just broth, rice and crackers.
I really appreciate everyone's support and hearing your stories. We have just passed the 100 day mark and didn't imagine that he would still be in the hospital. Trying very hard to stay optimistic.
Things were moving along pretty well until they did a pre-cautionary CT scan of his lungs. They saw small nodules on the CT scan and after doing the biopsy they have discovered they are EBV related. His EBV levels had been elevated previously and he had three rounds of Rituxin but I guess the levels have come back. They are now planning on doing another four rounds of the Rituxin.
He's been in the hospital since August 18 and I feel like I have run out of ideas of how to keep his spirits up and things to help occupy his time.
Hope everyone here is doing well.
Krista
It is good to hear from you although I am really sorry to read of your partner’s ongoing problems. It is really great that the GvHD is under control, that is a massive positive, and you/he should cling to that in hope for the future. In terms of EBV, hopefully another blast of rituxin will do the job. Is that what is holding him back from being discharged? How is he eating now? Is there improvement?
He and you are truly tough cookies and I am in awe of your strength. Three and a half months is a long time to be in hospital but I guess I would say if you can sustain that long, why can’t you do one more, and then one more, and one more, as needs be until he is finally out. He has done so incredibly well so far. Does he have access to in house mental support (psychologist, etc) The one thing I would say to try and give you hope is that the mind is an incredible thing. It can withstand a lot of trauma and still bounce back. It may take a while but it can and does bounce back - all of this nightmarish experience can and only will be temporary, so please keep plugging away as best you can, one foot in front of the other. As much distraction as you can possibly muster is the way to go.
I am sending you loads of warm wishes and please keep us updated.
All the best,
Greg
Unfortunately we had a pretty big setback today. More test results came back on the nodules that are in his lungs. The doctors identified it as Post-transplant lymphoproliferative disorder (PTLD). He will start a course of Rituxim today along with five chemotherapies and will hopefully only have to do this twice. We were really hoping he would be coming home soon, but with this course of treatment the doctors have said it will be at least another 8- 12 weeks.
I am so sorry to read your news. Your partner has been through so much already, the news must be so hard to take. I know nothing about PTLD and so all I can say is that I am sending you and your partner loads of strength for the next 8-12 weeks. I am in awe of what you have done already and so I’m sending you loads of strength to carry on doing what you are doing - one day at a time. And we are all here to help as best we can, every single step of the way.
Greg
Just thinking of you and your partner. All the best.