Vidaza patients…

[Dawn]

Hi everyone,
I should be on here more often and I am sure if I did a “search” I might find the answer to my question, but I am hoping those who have been treated with Vidaza can share their experience with me. My dad was dx 1 year ago with MDS/RARS, he has had about 9 months treatment of Vidaza…for several months it seem to help little, he was still transfusion dependent, then this last early summer, it looked hopeful and postitive his counts were going up…no transfusions for 3 months, then all of a sudden a dive in counts etc, so the last few months he has been back to transfusions, of course, his lifestyle has changes so drastically it hurts me to just see him so tired and weak all the time and I can tell just by his coloring when his hematocrit is way low, he gets soooooooo pale…I guess my question is that how many of you had this rollercoaster of results from Vidaza, what can I look forward to, is this a bad sign that things could about to become much worse?…thanks for your time…

[eve]

hi dawn,

the only way to really know if the vidaza is working is by doing a bmb- has your dad had any since he started treatment – my dad had a bmb every 4 months when he first started treatment – now he gets one every 6-9 months – acturally he is probably overdue for one now, but i think the hemodoc is holding off because my dad has had some bleeding issues

good luck

eve

[Sandy L]

Mike has not been onthat long. He starts his second treatment this Thurs. Sorry I can’t be of more help.

[sdrake]

My dad had 4 1/2 rounds of Vidaza, and things were looking good. His counts stayed up except for his wbc. Dad has CMML, so we were happy that the white count was getting lower. His ANC got too low to continue treatments, so they were delayed about 6 weeks. During this time his rbc and hemoglobin got quite low. He didn’t have any tx but had to be very close. I was very afraid that the Vidaza had stopped working. Once his ANC got above 1500 treatments were started again at a reduced dose. Thankfully his counts began to stabilize again, and his treatments have continued. I too am concerned about when the Vidaza may stop working again and wonder what to expect.

[Terri]

Bob is about to start his 10th or 11th round this time and His counts have been pretty steady. Lately the HGB has not hit 11 but stays Mid 10s the whites came down to Normal one week then last back up to 14. That is our biggest concern.
He has a regimen of vitamins and supplements and we try to stay on a healthy diet.

I hope things start getting better.

[Dawn]

Well I would think that it is not working since he took such a dive in his count. His level has never gone above 10.5 since Vidaza started. Anyone with any more info?….

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