vidaza

[musicguy65]

hello my name is steve my wife has had itp for 4 years now doctor days she has mds, transfusions of plateletes and hemoglobinm not working, now says needs chemo, vidaza ,can anyone on this, used this, please tell me about it, side effects, does it work in the long run, really scared. plus she has diabetes really worried the doctor and infusion room says she might need more trans fusions of hemoglobin. being on v idaza, scary please inform me. it will start at a 5 days a week once a month, it will be tough it is an half hour awaay where we live to get injection, help me please. is it going to b worth it thank u steve

[bailie]

Vidaza saved/extended my life. There is considerable information on this forum that is easily accessible and will probably answer all of your questions. People react differently to Vidaza. Generally it is well tolerated. I didn't notice anything except reddening in injection area and often went golfing almost immediately after the injections. I had injections for 7 consecutive days then a 21 day wait until the next cycle.

[DanL]

I have been on Vidaza two different times - once in November and December of last year prior to my bone marrow transplant, and I have now been on it for three months post transplant. The side effects have generally been minor, and you do tend to see blood counts drop before they rise when it is working. Vidaza can take quite a bit of time to see a positive impact. Standard therapy says at least 4 treatment cycles, but it can take as many as 11 cycles to reach the best benefit.

The key with any chemotherapy drugs are to make sure that you take the anti-nausea drugs when they are offered. It is really easy to prevent, harder to catch up once it kicks in.

I wish you and your wife the very best.

[bailie]

And remember to pay very close attention to constipation while taking the anti-nausea pills. It can be very serious.

[musicguy65]

was anyone diagnosed with itp first, was diagnosed with this , low platelets, then all of a sudden mds going on 4 years with itp now mds, confuse although in my research itp part of mds

[bailie]

"Confused" is often used in the same sentence with MDS. A link presented a few days ago by "Hopeful" was terrific. It is a presentation by Gail Roboz, MD about MDS. All two hours are worthwhile for watching. An interesting takeaway from the presentation is that there is a great amount to learn about MDS and can be "confusing" for everyone at times.

https://live.blueskybroadcast.com/bs...=1418&CAT=8549

[musicguy65]

hope it will go we go well

[DanL]

My initial diagnosis was ITP, but I was later confirmed to have MDS. The confusion in my case is that I started off pretty young to have MDS and the only cell line that seemed to be affected was platelets. I was later diagnosed with MDS as I had the trisomy 8 clone - but still had limited dysplasia. Over the course of the next 4 years, the dysplasia became more pronounced and started showing up in the wbc and rbc lines, ultimately leading to a stem cell transplant in February.

the time from ITP diagnosis to MDS diagnosis was only a few months, but the real confirming element was the chromosome damage, not so much the dysplasia at the time.

[sobrien]

I have been on either Vidaza or Dacogen for 2 1/2 years. I describe my treatment as my 7 plus 7 every 28. I get 7 days of Vidaza followed by a $7K shot (Neulasta) every 28 days. Vidaza is what is keeping me alive by killing the rogue cells. However, it also keeps my white, red and platelets down. They are better than at the beginning of my treatment but still not anywhere near the low range of normal. But, I have great energy, attitude and so much gratitude to God for what this treatment is doing for me which is keeping my life going (even though it seems like I spend half my life in an infusion room).