Lori,

I have been thinking and praying for her as well. Praying she is well.

Julie

Lori and Julie,

I'm sorry that I have added to your additional worries. I don't visit the site too often and post even less. My battle with cgvhd is ongoing and debilitating. Most days my fingers are too cramped and deformed to open a computer and my scleroderma soo bad I look 9 months pregnant. It has travelled to all parts of my body including my face and neck and is squeezing my lungs.

I feel as there are so many new people on the site just starting out on their journeys with this beast my contributions are not what they need to hear right now.

I pray for all of you daily new, old and the warriors who blazed a trail for us. If any one needs advice on cgvhd of the skin I'll try to answer.

But I'll finish on the biggest up note next Wednesday the 13 th of August I will be 2 years post transplant. I never celebrated the first as I always saw the 2nd as my milestone.

Prayers

Majella
Xxxxx

My comment wouldn't post so I'll try again. I am so glad to hear from you but sorry you continue to face such awful gvh issues. keir's six month anniversary is also the 13th - a big day on the board!

you are one of my heroes, Majella. I have always appreciated your calm, unvarnished and honest assessment of things as well as your hope and encouragement.

Good to hear from you, Majella. As a fellow FLT3er I look to you and realize that nasty little mutation is survivable if everything goes just right. I know you were struggling with GvHD and I'm sorry to hear it still persists. Right now I'n struggling through a case of shingles, just like Cliff, It's very uncomfortable and it takes a while to heal. I just hope it does indeed heal and doesn't linger.

Check in from time to time. You are one of the treasures of this board and even though you're thousands of miles away from most of us we feel like you're our next door neighbor. Take care and good luck.

Lou

Majella and Lou -- I really feel for you both and can only imagine the discomfort and pain. I am sure that it is worse than anything I went through with chemo. I will be praying for you and perhaps you can get some comfort from the book of Job ...
http://d30034518.purehost.com/Articles/AAARecent/090501JobEarly.htm

I hope this helps -- please keep fighting; we so greatly admire your courage. And please never hesitate to keep us up on things -- dave

Majella, I'm happy to see your post but I am so very sorry that you have been so uncomfortable. I think about your struggles and hope that new treatments will be available soon to give you relief.

xoxo
Monique

Majella

I hope that they can get your GVHD under control and that you can be more confortable with less pain.

Karen

Majella,

It was wonderful to hear from you, but sad to hear that you have been so terribly tortured by GvHD. I pray that it starts to recede and that you will be feeling better.

XO, Cliff

So sorry to hear about the gvhd. My brother is battling the same thing but he has had awful nausea, vomiting and diarrhea. In researching some treatments, I ran across this article:
http://www.familypracticenews.com/single-view/maraviroc-cuts-post-transplant-gvhd-rate-in-hematologic-cancers/a2ee436ab8f4fe2cd53624d9552ba654.html

It is still very inspiring that you are two years post transplant as my brother's aml relapsed less than two months. The team has been able to control the nausea, but he still had a lot of diarrhea. Luckily his oncologist is open to herbal medicines because once I brought in this smelly medicine ( almost all Asian parents know about this), his diarrhea immediately slowed.
http://en.wikipedia.org/wiki/Seirogan

CC