Vidaza: How Long Can You Live? MDS Diagnosis

[sobrien]

Hello group:

I am weighing the risks of a transplant with the risks of Vidaza effectiveness and what my chances are for 5 more years of the good life I enjoy right now. I can live with 7 days of Vidaza infusions followed by 5 days of Neupogen shots the rest of my life, however long it may be. I read the research that says Vidaza is effective for 18 to 24 months.

But, that is the mean. How many people live well with this treatment for years? Is there anyone on this site that has had 3, 4, or 5 years of Vidaza and you still enjoy life?

After 7 months of Dacogen, then 8 months of nothing, now 5 months of Vidaza I feel great, have no side effects and do everything I did before MDS. I bike up to 20 miles once a week, walk the dog two miles every day and play rigorous Pickleball several times a week. We are professional accordionists and we just performed at the Scandinavian Festival on the main stage for an hour four days in a row. I was totally energized. I want to keep this life going. There are many more ethnic festivals that need and want accordion music, believe it or not!

With a transplant, this life immediately comes to an end and perhaps takes a year to regain, maybe never.

Is there anyone out there that has kept the good life going with Vidaza or does it lose it's effectiveness in a couple of years according to the results reported in the often-cited research study.

[DanL]

This is an excellent question. I have not seen a lot of data out there about long-term survival, but know that we had one person on the forums that went through over 40 cycles of Vidaza before going to transplant, and I have heard stories from my doctor of people that have been on for 60 months or more. I know that this is not the norm, but there are certainly cases where people have had great success with extended Vidaza treatment. Recent research suggests that best response may not occur until about 11 or 12 months in many patients, and the duration of best response is variable.

I wish I could provide a more scientific answer, but looking through the articles, this does not seem to be a question that is really reviewed, or it is possible that there just isn't enough data available. Onee older study had transfusion independence periods that lasted 5 to 7 years, or more in a small percentage of cases.

http://jco.ascopubs.org/content/24/2...expansion.html

Hope this helps.

[sbk007]

I'm on my 4th round of Vidaza now.
Was fortunate to have a very good response after 1 round and after round 3 HGb was 14.9, Plates 170, WBC 6. My doc says if I decide to forgo the transplant route he'd put me on Vidaza maintenance which is 5 days every 4 weeks , then move it to 5 days every 5 weeks. I'm 55 and he doesn't blame me for having doubts about an SCT for all the reasons you mentioned. Hope we're in that subset that can get a lot of mileage out of the Vidaza.
All the best