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Need info on Vidaza

This topic has 18 replies, 1 voice, and was last updated 18 years ago by hmblume.

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May 14, 2006 at 3:23 am #12893

Bkwits
Member

Hi Susan,

Make sure that your dad has had complete check up including lab work. My husband had very caring and compassionate doctors, but they neglected to check his kidney function. He suffered kidney failure during his first week of taking Vidaza. Joe didn’t feel he had any other options at the time. His platelet count was below 10k, and he was resistent to platelet transfusions. He was getting rbc tx’s very frequently. There are risks whatever he decides to do. I will remember your family in my prayers.

Barb

May 14, 2006 at 5:27 am #12894

Dennis
Member

Guess I should update my comments on Vidaza. We had a little scare when counts dropped considerably. Doc ordered a BMB, and both he and the transplant doc agree it is improved over the original BMB done last August. We’re resuming Vidasa on Monday, but on 6 week cycles instead of 4, and going back to “chasing” each cycle with a shot of neulasta. I had refused the neulasta, thinking my counts were fine and not subject to dropping.

In short, we’re continuing Vidaza, and we are getting better. Praise God.

Dennis

May 14, 2006 at 8:18 pm #12895

Terri
Member

Bob has some good days, We just took a long weekend to Disney World. He doesn’t last as long as me and He makes use of his Mobility scooter so he doesn’t tire walking but We had a great time. The only time he really doesn’t do much is the treatment week, but Friday was the fifth day of treatment he goes back Monday and tues for last does, We went to breakfast yesterday, and some stores. Its the disease that has slowed him down the Vidaza I feel is stopping him from progressing to AML and giving us the time we have together.

May 14, 2006 at 11:31 pm #12896

hmblume
Member

Susanj, et al
Pharmion has a booklet on Vidaza; call them.
They talked and listened at the AAMDS-I update meeting in Denver last July. In my perception, about 6% get remission, about 10% get significant improvement, and 25-40% have quality of life decline more slowly. There are also things you can do when being treated, such as anti-nausea treatment. As I follow this forum and listen, some get great help while some get little. Pharmion recommends 4 sets (a set is 7 daily treatments followed by a month off, to recover or live). Many have declining blood counts after 2 sets and stop. At any rate, Vidaza is considered for most a temporary fix, although some are in remission for years.
In my case, Dacogen (decitibine) is just approved and some (in clinical trial) report improved platelet count with Dacogen, which looks better for me with CMML, although my Stanford consultant has doubts.
Finally, a center of excellence seems advisable for you. HB
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