Contnuing Vidaza after Response

[bobweinberg]

After 3 rounds of Vidaza, I began to respond. I am now on my 6th round and have not had an RBC transfusion since June 29, 07, about 3 months. HGB is now at 14.2, after dwelling between 6.0 and 9.0 for the past 9 years having RBC transfusions every 8-14 days. Platelets and WBCs are volitile, a couple of weeks ago my platelets were 13,000; now they are 98,000. My ANC on Monday was 770; two days later it was 1,500.

My question is whether others who have had partial or complete responses to Vidaza have continued on the drug or stopped taking it? My hem/onc is not sure which is the best route. Are there any data on whether the duration of response is better one way or the other?

[choijk]

Wow Bob! Congrats on your great success! I can’t believe you had rbc transfusions every 8-14 days for the past 9 years! That is very encouraging for families like us, who are struggling with those darn rbc’s. Are you still considered MDS RARS ? Did you have any side effects with Vidaza?

[covergirl]

Great News Bob. Hope the Vidaza continues to work well for you.

Vidaza would be my next step if not a BMTransplant, although I’m not convinced transplant option is for me.

Anyhow, I made it 7wks before needing my last btx and probably would have made it to 8weeks had I not been leaving town for a conference.

Thanks for sharing your results. It is very encouraging to me and I’m sure for others as well.

–cheryl

[Mary4Mike]

Bob,

So happy to hear about your positive response to Vidaza. My husband took Vidaza for approximately 1 year. Prior to starting it, he was tx dependent (monthly). After beginning Vidaza, he had only one tx, one week later. He never had another tx for 12 months when his counts went down again. It was a slow decline in counts. He never got a HGB response of 14 though. He was lucky to hover in the low to mid 9’s. We still felt this a success because it kept him off tx. His other counts were good. Our doctor’s opinion was to keep him on it as long as it was working. He never had side effects from it (that we know of). He is finishing up a 4 month trial of Revlimid which has not proven to be an answer for him. Next step is going off everything and seeing where he levels off (doctor’s idea) and then beginning Dacogen.

Keep up the good work and let us know what you decide.

[sdrake]

Bob,

What great news! I don’t have any answers for you, but I can share my dad’s experience. Dad was on Vidaza for 2 1/2 years. He had a very good response to it, although not as good as yours. In the time Dad was on it he only required two transfusions. This summer Dad noticed his spleen getting larger and was experiencing some night sweats again. His blood work remaind quite stable though. His oncologist did another BMB. There wasn’t a lot of change, but the doctor felt it was time to switch to Revlimid. Dad was off Vidaza for nearly two months while he waited to get the Revlimid. Dad’s WBC skyrocketed. His CMML got way out of whack. I can’t help but think that had he done another round of Vidaza during the wait this might not have happened, but who knows. It seems that the Vidaza really kept things under control for Dad. I would be leery to stop treatments altogether. Just my two cents. Good luck and continued good health.

Shari

[californiamom]

Bob,

Hello and I’m glad Vidaza is working for you. Just some information about my dad and Vidaza. He was on Vidaza and it worked very well for him, his counts were stable and he only had a little diarrhea. His doctor didn’t know what to do either, whether he should wean him off or keep the Vidaza going, so he weaned him off and my dad got worse. Also, once you’re off your body doesn’t react to the drug as well again, so my dad was put on Dacogen, which put him into AML. I would recommend staying on the drug since it’s working and you don’t really have any side effects, but that’s just my two cents.
Good luck with everything and it sounds like you are doing great.

Kirsten

[frank]

good news,

i failed once for vidaza, which got me in infection, and stop since. but i still want to try the drug some day later(until my girls reach some age).

from what i heard in this site and someone i know, as long as the drug effect, just keep continue, and i knew someone get it work for 4 years. really worth it.

thank you for posting a good news for us.

Frank

[maueenh]

Bob,

My father’s experience was similiar to Kirsten’s dad. He did very well until they started to stretch out the frequency of the treatments. It may have been coincidental but we’ll never know for certain. My father’s doctor never suggested stopping the treatments claiming that his experience had been that once stopped they were unable to get patients back to previous response levels. Your response sounds great and I hope it continues for a very long time.

Maureen

[bobweinberg]

Thank you all for your good wishes. It sounds like once things start going well, don’t change anything, so I will lobby for staying on the Vidaza. As for side effects, yes, the Vidaza has suppressed my whites and my platelets, and I had an awful awful bout of vomiting and severe headached when I forgot to take my Zofran one morning. I won’t do that again. The only other side effect is soreness at the injection site.

I fear that the Vidaza will stop working – but I have to take it day by day.

[cherylm]

Hi Bob,

I’m happy the Vidaza is working! I don’t know what’s up with my dad. He’s hoping to start his 5th round of Vidaza this week. He was supposed to start today but his counts are too low. He get blood transfusions every week or tow as well. Now we learn his iron is getting too high. So far we have not seen any change in his counts. It’s so depressing. His platelets are always low, 8 today. So he gets them alot too. His hemo is low as are the reds and whites. I keep praying the Vidaza will kick in but after each treatment it gets harder and hardes. Keep the board posted on your progress. I see you’re from Philly. What doc do you use??’

Cheryl (northeast PA)

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