My dad just had a transplant for AML 3 weeks ago(9/10 ud) in Seattle. He has developed aGVHD in his stomach and Gut. The doctors won't stage it so i am finding it hard to research. He basically has diarrhea, around 500ml/day, no cramps or abdominal pain and will not eat. They had him on steroids for 2 weeks but it did not clear up the GVHD. They did a second biopsy which seemed to show some improvement, but it was still there. My google research tells me he has steroid refractory GVHD which doesn't look like it has a great prognosis. Last night they started him on the ATG treatment(rabbit) to see if that will help. From everything i've read i am guessing he has moderate, but uncontrolled GVHD.
All other organs seem to be unaffected and his blood counts are great. He feels good aside from the diarrhea and the fact that he can't eat, just tired which seems normal.
Just wondering if anyone has any experience similar to this or if anyone has any advice to share.
I think it's too early to worry negatively about the gut and prognosis at the moment if it's not getting any worse.
GVHD of the gut takes a VERY long time to cure and handle, and your father just started the 2nd line of treatment. Even if the steroids dont work, or only partially work, there are still many options for treatment. More high dose steroids, clinical trials, ways to 'control the diahrea', etc.
There are a lot of people in a worse off situation than your father's who make it through, in months or years of treatment.
I hope the atgam works, it usually does for most people.
It does not appear to be getting worse, they actually said slight improvement after the steroids, just not gone. I could not find any other treatment options after ATG so it is good to hear there are some. You can read a lot of negative things about refractory GVHD, should probably take a break from google for awhile. Most of the information on ATG that i've found seems to be 10 years old as well... so its hard to tell if the therapy has improved since then.
Also found out there there has been no damage to the lining of his stomach or intestines yet. The doctors seems pretty happy with that, apparetly that is a hard complication to deal with and takes awhile to heal.
Thanks again for response...
Getting information is important but you have to be careful not to read too much into it. Make sure that you check the publication date of the articles so that you know if it's current information.
The Hutch is top notch. Talk openly with the docs to get their honest thoughts on the situation. I had gut GVH but your Dad's sounds worse. I went for days (a week maybe) without eating. At some point, I had the desire to chew and that's when I started asking for food. I could only handle a couple of bites at a time. if you can get him to do that, it will help. When he does start to eat, don't push him because he'll be limited at how much he can handle.
I find myself asking "what steroids?" I was at the Hutch and the only acute GVH I had was in my gut. They started me on belclamethazone and budesinde (B&B) over the weekend to see if it would help. They then put me on high dose Predinisone. This is why I wonder what steroids they used. I imagine it was something similar but Prednisone does so much more to help with appetite and a feeling of wellbeing...maybe too well being.
Those folks in Seattle know what they're doing as well as anyone on earth when it comes to these types of transplants. I wouldn't worry overly much. I also agree that doing too much looking around at books is kind of dangerous unless you already have the tools needed to not only read articles but to read what they're not saying, as well.
I know one thing I always did when I ran into a term like "refractory." I asked the doc the next time I saw him/her. Sometimes I asked my burse because some of them knew as much or more than the docs, especially when I was seeing a PA or a Fellow.
You didn't mention if your dad's still at UW or if he's on clinic visits, yet. Either way, next time he sees a doc, I'd be sure to have that on my list of questions..."Could this be streoid resistant?" These folks will be your best teachers.
Thanks to everyone responding... always a help to have another persons experienced take on the situation.
My dad was started on Prednisone for his stomach and guy GVHD, after a week they did a scope and biopsy and then doubled his dose for another week. There were slight improvements to his skin rash and he was able to eat a few bites of food for a couple days. I believe the diarrhea even cleared up for a couple days.... it just came back towards the end of his second week on steroids. I'm not sure if this means refractory or not. At this point the DRs said they had to take him off steroids so this ATG treatment was the only option left. He had his third of four doses(standard dosage im told) last night and seems to be handling ok so far... no fever or chills, etc.
Sounds like we continue to wait and see... diarrhea doesn't seem to be getting any worse, still at around 250ml/day but doesn't seem to be developing any more of an appetite either. DRs said it will be around 10 days to see if this ATG is working.
Thanks again to everyone... what a terrible thing for people to have to go through.
I understand completely. I had my transplant 20 years ago for BAL, Biphenitipic Acute Luekemia. I had the most severe case of chronic GVH Vanderbilt had seen at that point. Nothing they did realy helped. It took 10 long years for it to basically burn itself out. I still have bouts of stomach trouble. Like someone else posted, I wouldn't be too concerned about that at this point. As long as he is feeling ok, don't worry about it. If he continues to lose weight, try a protien shake. They are easier to get down than forcing him to eat. Hang in there. One day at a time.
Nice to hear from a long term survivor... im sure you're helping a lot of people on here.
He says other than feeling full all the time and the diarrhea he feels really good. No pain, no cramps, just tired. He has been trying fruit smoothies and seems to get a little down, although i think he's forcing it down, not because he has an appetite.
i don't know about the B&B but will ask. i don't think they have tried that.
they said they can't keep him on the steroids longer than 2 weeks at a time. They are weening him off(10% less dose/day) while they are doing this ATG treatment(last does tonight)
im trying to find out if they will go back to steroids if the ATG does not work... no straight answer yet
Last ATG treatment was ended last night around 10pm.
Wb at 1.49(down from 3.49 yesterday)
Rb at 29(down from 31 yesterday - i think they transfuse at 26)
Platelets at 57
Net’s at 1.32
Billibuben at .8 (yesterday was 1)
No diarrhea since yesterday around noon. No real appetite yet, but having a peanut butter and jelly sandwhich for breakfast. Overall very tired.
Have asked Nurse about steroids and waiting on someone to come talk to us.
They have always had him on the same steroid – prednisone, even during this AGT treatment. Now that the treatment is done, they are reducing the steroid by 10% every three days as they just cannot take him on completely at once and they cannot keep him on this high dosage forever, so they slowly cut back and see what happens. I think they will stick with this sterioud as he did respond to it before, the GVHD was just not controlled and the steroid did not help totally, so it needed a bit more help, therefore the AGT tretment. If one steroid does not work, they will try another one. They have not yet tried the B&B but it may be considered yet.
Not sure if this makes any sense to anyone... i find it all very confusing.
I might have said this earlier but the thought I got from them was that the Prednisone was to treat the symptoms and the B&B was to work on fixing the situation. Of course, I wasn't on ATG and I had different doctors. Even at the Hutch, you find considerable diversity about the effectiveness of some treatments. Maybe I should say "especially" at the Hutch. They all think they're freaking experts there.
That's about the only thing that makes sense to me. They try new things and it changes the landscape and the protocols. I mean, I'm certainly glad they've made progress in the past several years but, still, it would be nice to know what I'm talking about occasionally.
Bottom line, they're on the case and I'm pretty sure they'll solve it.
wel... interesting day yesterday. No diarrhea for about 36 hours followed by a fairly firm bowel movement. He WBC adn Nuet counts from the ATG that had dropped to just above 1 went up over 2 yesterday and they sent him home... Originally they said he'd be in the hospital another 10-14 days once starting the ATG treatment. That was 5 days ago so im not sure if he just handled the ATG better than they thought or what... but they seem to think he'll do better out of the hospital.
He is back at the apartment and will be starting clinic visits today. Still no appetite and the DRs say the diarrhea will likely still be there but will come and go... so i guess we'll do some more wait and see.