[Mark]

Re: SCT - Allo

by Mark on Thu Jun 28, 2012 9:44 pm

Kathy,

Great to hear that you are still doing well.

My allo transplant went very smoothly. I only had a grade 1 acute GVHD skin rash for about 2 weeks. I had a mild skin rash and sore gums (mild) for about a month I discontinued the immuno­suppression. I used a drug call tacrolimus (Prograf) for immunosuppression. I did not have to use any steroids. I have been off all immunosuppression for about 7 months and I am doing great. I know you struggled the first couple of years after your allo. I am grateful that courageous patients like you did allos so the doctors could make the procedure easier/safer for future patients like me. A sincere "Thank You" for that.

Mark

[Kathy Pedersen]

Re: SCT - Allo

by Kathy Pedersen on Sun Jul 01, 2012 1:47 pm

Hi Mark- I am glad to officially meet you! I can't tell you how good it is to hear that the allo trans­plant process has improved and that you were able to avoid long term steroid use. I'm guessing, but I would say it took me at least 1 1/2 years post transplant to get off the steroids. For many months any time we tried the nasty GVH would rear its ugly head.

Is "your story" posted on this website? I am confident that your story will soon be bringing as much hope to others as mine does!

[Dana]

Re: SCT - Allo

by Dana on Mon Jul 02, 2012 1:46 pm

Hi Kathy (and Mark!),

I'm not quite a year out from my allo, but reached CR for the first time ever in the spring, and am now in "stringent" CR. I can only hope and pray that my remission lasts as long as yours. How often do you have blood work now? And do you ever receive Zometa or Aredia? Like Mark, I had acute GVH at Day 100, and then chronic gvh from about the 4 month out until now, although it's lessened quite a bit and hasn't ever been severe enough to treat. [And Mark, I also take Acyclovir and Dapsone, and was taken off Voriconazole several months ago.] My donor was my older brother, and he was only a half-match; it was a mini-haplo (reduced intensity) allo just a few months after an AutoSCT. My issues right now seem to be all in my head--training my thoughts to stop predicting/worrying/dwelling on how long the remission might last. How do you ever put it behind you? You and Mark are both inspirations, and I am so blessed to have found some other allo survivors to pave the way! Mark, I forgot to comment on how amazing it is that your donor wants to contact you. You are blessed with a new sister in your life! Take care, Dana

[Kathy Pedersen]

Re: SCT - Allo

by Kathy Pedersen on Mon Jul 02, 2012 9:31 pm

Hi Dana, It is so nice to meet you! Wow, one year post transplant and a successful remission. You must be so happy! Amidst the happiness I know there can still be fear though. The uncertainty is really difficult and It definitely changes you. On the down side, you do have to constantly battle the negative scary thoughts. All these years later I still have my moments of fear. On the positive side you cherish life so much more and enjoy the simple things more than you ever did before. I guess in away it's a trade off. Personally, a few years ago I read a book called "The Lies We Believe" that really helped me realize that everyone has negative thoughts that get the best of them. I guess we aren't unique in that. The concepts in the book helped me to re-train my thoughts. It really is an amazing concept and it works! I hope that talking to survivors like Mark and myself helps you too.
Using what we've been through to help others brings a positive purpose to an otherwise very ugly disease.