Vidaza Cycle length

[anangel8]

Hello. My mom was diagnosed with MDS in Jan 2013. She started out with 7 day cycles of Vidaza, for the first 5 cycles. Then the doc dropped her to 5 day cycles for 3 cycles. Her counts have been dropping consistently since the beginning of August. Her last cycle was a 7 day cycle and her counts have not yet recovered.

Has anyone else had this happen and when they went back to 7 day cycles, their counts recovered again? She recently had another bone marrow biopsy, and results are still pending, but the doc told her Vidaza isn't working anymore since her counts are still dropping. I feel like it could be that she needs more time at the 7 day cycle length for 1-2 more cycles to see.

She responded so well and after only 3 cycles, I have a hard time imagining that she would only get 8 cycles worth of response (6 really, since she has been dropping for 1.5)

Please help! I want to ask the doc to continue with the 7 days, just to give it a fair shot...

Thanks!

[Whizbang]

anangel8,

You might want to see if they can switch her over to Dacogen, as some on here have had success even after Vidaza stopped working... It's been said that they are very similar, and the likelihood of the second one working is very low, but very low is still better than not...

I also think that the resting period (personal opinion) in between treatments is too short, ie. 1 week on / 3 weeks off, I personally went 1 week on / 4 weeks off (due to a cold)... I think that this made a big difference, since my ANC (Neutrophils) were down to .5, WBC down to 1.7 after only 3 weeks past the 1st Dacogen treatment... That 4th week did wonders for my recovery ANC = 1, and WBC = 1.8 , and did not at all affect my second round of Dacogen.

After my 2nd round my ANC were up to 3, WBC up to 4.1 and this only a few days after my 2nd 5 day treatment...

I'm no doctor, and my advice is only anecdotal, but sometimes you have to question, and suggest alternatives...

Wishing you and your Mom only the best.

[anangel8]

Thanks Whizbang.

I am fighting with her doctors now to keep her on Vidaza 7 day cycles. I am an oncology nurse and I have seen people respond to the 7 days and drop on the 5 days.

I have asked about Dacogen and they won't do that either. Their solution is the clinical trials although the MD I work with thinks we should continue the Vidaza as well.

It is so frustrating when these doctors don't want to work with you. I have never seen such closed minded MDs, and I have been in oncology for 10 years.

I wish you the best of luck on your journey and so glad you have found a treatment schedule that works for you. Stay strong my friend!