vidazia

[barbinmd]

Diagnosed in april as a result of chemo/radiation/etc for multiple myeloma. Red and white cells are slowly improving after several shots of neupogen and procrit, but platelets continue to drop.

It looks like I may start Vidazia in the next month or so. I’m interested in hearing about the timing and seriousness of side effects and if my platelets respond, would I stop taking it, or must it be continued for a certain number of cycles?

I’ll appreciate any input.

Barb near Washington, DC

[bobweinberg]

During the first 4 months on Vidaza, my counts dropped in all 3 lines. Not really any other side effects. At the 4th month, all my counts started to climb and my HGB went on its own up to 14.4. Platelets and whites went up as well. I was transfusion free for 5 months. The Vidaza lasted longer for others, I have heard of it lasting 3 years. All in all, it was a good experience for me and allowed me to continue chelation threrapy so I could lower my ferritin level significantly. I am glad the procrit is working for you. It did not work for me at all.

[Anneg]

The main side effect I have is constipation and nausa. But I have other medical issues. I am not a normal patient. But the combination of vidaza and revlimid have dropped my blast in my blood to 0 and in my bone marrow from 15% to 5%. I will be on Chemo until the transplant or until the good lord decides he wants me. Not any time soon I hope. good luck

Anneg
God Bless

[Janie]

Hi, Barb,

I was diagnosed with a complex form of MDS the end of February and am now almost done with my 4th cycle of Vidaza. I do have some bad days where I feel like poop and have that chemo brain with headache, but compared to others I have seen doing chemo, the Vidazza is much more milder.

My doctors at Moffitt Cancer Center in Tampa wanted me to complete 4 cycles before having a bone marrow biopsy to determine the true benefits of the Visaza. Having that done on Monday. I do get blood work weekly showing that my counts are stable and even at times have improved. I will continue until a stem cell donor is found.

I trust that you will find success with the Vidaza as I have heard it to be very promising.

[Roscoe]

Ladies:

First, I think there are no "normal" cases of MDS. I’m sure that adds tremendously to the treatment regimen.

Concerning Vidaza, my Dr told me he didn’t expect it to do much but it seemed to have a positive impact on transplant success. I had a SCT in Jun 08. Still suffering from GVH and all the crap that comes with that. You are at a point now where you have to let the system work. Loss of contol is difficult, I know.

I had my transplant performed at Barnes-Jewish Hospital Washington University Physicians in St. Louis.

I feel like I have experienced it all so ask away.

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