Any other options?

[kyis]

Well I haven't been on the forum in a while. I have been working and trying to move forward, but looks like it is finally catching up with me after 8 years of no treatments, drugs or transfusions. In 10 mos I went from 10% blasts to 15%.
hct, hgb and rbc all have has been coming down and recently out of breath. I been hanging onto low wbc for years usually 400-800 and haven't been in hospital for over a year.
1st blood transfusion planned for This week and Vidaza starts Monday. Lower dosage because of counts and I'm hpyocellular 5-40%. I'm usually about 20% or so. I use to have perfect matches available. I hope they are still around for transplant. Pretty darn scared now that they are putting me into the game, but fear to fight, right!
So..
Could I go straight to transplant, is it that much better to get blast down still?
I couldn't find a trial near me (SF bay area)
Of course its the 5 days on, 2 off, 2 back on.
Is 5 good enough or should I just do the 5-2-2.
I find it amazing that after 20 years we still only have Vidaza, and thank god we do.

[bailie]

Kyis, I feel strongly that the best condition you can get in before transplant is important. I had eight cycles of Vidaza before transplant. I was diagnosed with blasts around 15%. The Vidaza brought blasts down to less than 5. There is a study that says less than 12 percent is necessary, but most say "the lower the better". All of my Vidaza treatments have been for seven straight days then either 21 or 28 days off before starting a new cycle.

[kyis]

Thanks Bailie,
Did you have any gvhd?
how long did you have mds before transplant?
Thanks,

[PaulS]

Hi Kyis - I was diagnosed with MDS three years before my transplant (six months ago) - I tried Vidaza but it didn't work - We decided on transplant when I started needing frequent transfusions and had become a "professional patient." My counts were falling and blasts seemed to be increasing. It was pretty clear it was time for transplant - had Vidaza worked we probably would have waited a little longer. My blasts were as high as 8% in a bad marrow sample and around 3% in a better sample right before transplant.

Before the transplant I was told blasts below 10% are associated with better transplant outcomes - so getting your blasts lower seems prudent - hopefully you will respond to the Vidaza.

There are different transplant techniques doctors use to avoid and/or manage GVHD - I think its most important to find a very experienced doctor at an excellent transplant center - that you trust and can communicate with easily. You can ask the doctor(s) what they will do and why. At the end of the day you'll have to rely on their expertise and experience. I had a pretty good flair of GVHD all over my skin - but it was managed and now is pretty much gone. A little GVHD is not necessarily bad as it can kill any residual cancer cells the chemo may have missed.

While treatment for MDS hasn't improved much since Vidaza - I think transplant technology has gotten significantly better over the last ten years.

Best wishes,
paul

[bailie]

kyis, I had very little GVHD. A little bit of skin rash that was barely noticeable that lasted a couple of weeks. I used a steroid cream that really worked. I was diagnosed with MDS eight months before transplant. The transplant itself was uneventful. I slept through almost all of it. I was very tired for the first 10-12 days after transplant and then it got better every week. I think one of the most important things is to be patient through the whole process. And remember that everyone's experience is different. It is really interesting how your body and mind deal with the situation.