Need help with GVHD

[rar]

I had a transplant 1 year and 9 months ago. I had a bad case of GVHD of the gut 3 months after the transplant. They told my wife they expected that I would die, but I toughed it out and after 2 months in the hospital I was sent home very weak. Since than I was able to recover much of my former strength. A year after the transplant I came down with a bad case of GVHD of the skin, mouth, and eyes. 120 mg of prednisone for a month relieved some of the symptoms. As a result I am leery of GVHD.

The doctors don't think it is that bad. I am glad to be waking up on the green side of the grass so I can't really complain. They think I will be on the transplant drugs forever, which I hope will be a long time. It is an annoyance.

Currently I have dry eye that requires eye drops about 6 times a day, dry mouth that does not allow enough saliva to eat any dry food and causes me to wake up a couple times a night with a very dry mouth. In the past 6 months I have had 3 skin cancers that required surgery and over 100 pre cancers that required freezing. The other problem is dizziness. This is probably caused by low blood pressure. I have seen readings as low as 58/32. Cardiologist thinks it is caused by some of the drugs leeching out electrolytes. He says eat more salt, drink Gatorade and eat potato chips. It helps somewhat. The low blood systolic is now up to the high 70's too low 80's. BP is worst after exercise. They are afraid that I will fall.

I asked about treatment for GVHD, I asked about photopheresis or a clinical trial. My oncologist thinks that my condition is not that bad and I should live with it. None of this is life threatening and I can live with it. I was wondering how others are coping with GVHD and should I seek a second opinion?

Ray

[DanL]

Ray,

Good to see you post. I know that you had a really tough initial ride but came through heroically. Prednisone can have some pretty nasty long-term side effects - I have cataracts and Avascular Necrosis as a result of its use, which means that I have a new left hip and am waiting to replace the right one and my left knee, possibly my right shoulder as well. Prednisone, unfortunately is also one of the best quick-acting agents against gvhd. I have maintained pretty well with higher concentrations of Prograf and Entocort for the intestinal issues. That being said, I saw my best improvement after doing 4 cycles of Rituxan. I have also had over 1 year of photopheresis, though I have not done any photo for over 4 months now. My numbers are all normal for about 3 months now - my HGB has decided that 12.4 to 13.4 is my new normal.

To answer your question though - it may be worth a second opinion - i know that my dr. really likes sirolimus - I cannot take it due to HUS/TTP, which is one of the potential side effects - We are working on "steroid sparing" techniques of managing gvhd because of the AVN. There are so many options for managing gvhd - the last list i saw was almost 20 items long - that there just might be something that you respond to that does not negatively impact you.

I just passed my second year post transplant on February 26th, so we are not that far apart.

Good luck as always!
Dan

[PaulS]

Hi Ray - how much prednisone are you on now? What else?
At six months I'm on tacrolimus, mycophenalate and prednisone - and trying to slowly wean the prednisone and mycophenalate - expect to be on the tacrolimus longer - When I had my initial GVHD they also gave me a high dose of prednisone. Then I stabilized around 50mg - I had four rounds of Rituxin - It worked great and let them start tapering the prednisone - now alternating at 5mg/20mg - and probably going down to 5/15 soon. Very nasty side effects.

An eye doctor looked at my eyes which are a little dry and suggested a hot compress in the morning to reduce the need for drops. I do that sporadically - but it always feels good when I do.

I agree with DanL's suggestion to get a second opinion or at least be more aggressive with your doctor - I do think there a lot of tools in the anti-GVHD arsenal - Let your doctor know your not OK with the status quo - and you expect him/her to find a way to eliminate the GVHD and improve your quality of life. The GVHD may be OK with the doctors - but not with you - Ask what else s/he can do.

Good luck - and best wishes

Paul

[GoodDay5150]

Hi Ray. My GVHD was never severe, but I've had pretty severe dry eyes off and on for a few years, some skin rash, etc. I did have some photopheresis treatments which seemed to help, and I have not taken any steroids for quite a while. I was treated for my GVHD w/ Nilotinib with pretty good results. It is a very expensive drug normally used to treat some forms of leukemia, but some studies have shown good results in some forms of GVHD. Some insurance companies, like mine, may not cover the costs, but your doctors may have ways around that. My previous insurance copmpany, which was a large HMO, did cover the cost with no issues that I was ever aware of. Here is a link to one of the studies


http://www.bloodjournal.org/content/...o-checked=true

good luck in your treatment.

Mario

[bailie]

GoodDay5150, that is interesting. I am about to start on Nilotinib as a replacement for the Dasatinib I have been on. These drugs are TKIs that are primarily used in treatment for the "Philadelphia chromosome" which is a primary mutation/translocation in Chronic Myeloid Leukemia (CML). The Dasatinib (Sprycel) kind of wore out its welcome with me but did a fantastic job while I was on it.

Did you notice any side effects with the Nilotinib? Or, anything I should be looking for?

[GoodDay5150]

Hi Ray. My GVHD was never severe, but I've had pretty severe dry eyes off and on for a few years, some skin rash, etc. I did have some photopheresis treatments which seemed to help, and I have not taken any steroids for quite a while. I was treated for my GVHD w/ Nilotinib with pretty good results. It is a very expensive drug normally used to treat some forms of leukemia, but some studies have shown good results in some forms of GVHD. Some insurance companies, like mine, may not cover the costs, but your doctors may have ways around that. My previous insurance copmpany, which was a large HMO, did cover the cost with no issues that I was ever aware of. Here is a link to one of the studies


http://www.bloodjournal.org/content/...o-checked=true

good luck in your treatment.

Mario

[rar]

Hi,

Thanks to all for posting relies. I will look at the Tasigna and Sprycel. I have VA for a drug plan. It is not on the formulary. In the past they have supplied non-formulary drugs. With the VA there is no deductible or co-pay. The oncologist thinks my GVHD is not that bad and photopheresis is inconvenient. I am willing to try if I could get off prednisone.

DanL, can you point me to the 20 drugs that work for GVHD? Did you have a port for the photopheresis or was it IV in the arm.

Thanks to all

Ray

Here is a list of my drugs. I take them either 1,2, or 3 times a day. Pred is once a day. PREDNISONE 5MG TAB, MAGNESIUM OXIDE 420MG, TACROLIMUS 0.5MG CAP, CMP-DEX ELIX/DIPHN, TRIMETHOPRIM/SULFAMETHOX DS 160/800, CALCIUM 600MG/VITAMIN D 400UNIT TAB, OMEPRAZOLE 20MG EC CAP, ACYCLOVIR 800MG TAB, SODIUM FLUORIDE 1.1% ORAL CREAM, MICONAZOLE NITRATE 2% TOP TINCTURE, AMOXICILLIN 500MG CAP, CYCLOSPORINE 0.05% (PF) OPH EMUL 0.4ML, FLUCONAZOLE 200MG TAB, DESONIDE 0.05% CREAM, CIALIS 5MG, NATURE_THROID 194.6MG, LUNESTA 1.5MG, MELATONIN 1.3MG

[GoodDay5150]

Hi ballie. I think that I had some slight gastrointestinal issues w/ Nilotinib, but following the directions carefully makes a big difference. I also had some occasional muscle and joint pain, but I think that could have been caused by my GVHD, not any meds. I think that the effectiveness of the drug(s) relies heavily on maintaining the correct level in your body, and that is effected a lot by what is in or not in your stomach. I was not taking very many other meds at the same time that I was on Nilotinib, so maybe that makes a difference. Also, since my transplant was for PNH, meaning that I was technically cured of the disease after my hospitalization, and 2 more bone marrow biopsies confirmed this, meds are going to effect me differently than they would have if I had MDS or something other than PNH. Did anyone on this forum ever imagine that you would know so much about things like MDS, PNH, CML, etc.?

[DanL]

Ray,

I have a trifusion central catheter that facilitates photopheresis, I understand that they can do it with a needle on the day of, depending on how frequently you need the photopheresis. The smaller pic lines cannot accommodate the flow required to get it done. Have you tried sirolimus yet? I know that some of the doctors that I have spoken to like this quite a bit.

Here is a list that I found:

http://www.cancerresearchuk.org/abou...-treating-gvhd

I hope this helps.