Vidaza finally "working"....what's next?

[BrianS]

My 80 yr old father was diagnosed 2 yrs ago with MDS, and, I've found this site immensely helpful over those 2 yrs, reading thru countless threads, thanks to all of you!

He's been transfusion dependent (2 packets very 2 weeks) for the past 2 yrs, and started Vidaza ~ 7 months ago. The treatment was fairly rough on him, and he never saw any positive uptick in his hemoglobin levels...every thing was continually in the tank.

The decision was made to suspend Vidaza after 7 cycles, conduct a BMB, and see where he was. Even though he felt like crap, his blasts had gone down from the 10-15% range (pre-Vidaza), down to ~3%.

And, then, in the past 4 weeks since his BMB, his Hemoglobin is creeping up on it's own...from 9.2 to 10.3 in the last week, and he's been transfusion free for 3-4 weeks now.

So, we're cautiously elated, but, wondering what's typically done next in this situation? Do nothing? Continue Vidaza at a reduced rate? Something else?

His Dr's recommendation has been...."suspend Vidaza in mid-April after 7 cycles...conduct a BMB....come back and see me in June and let's see where you are"

It would seem that next steps might be critical here, as we try to sustain the positive results?

Any insights are GREATLY appreciated!

[bailie]

It seems that there is no typical reaction to Vidaza treatment. Generally the accepted reaction is for blood counts to go down for about the first four cycles and then start getting better, but this varies greatly from person to person. My situation was that all of my blood counts got better, but blasts have stayed about the same (after 5 cycles).

There is a lot of "guesswork" by everyone it seems when deciding how to continue with Vidaza. I would think that there would be a continuation of the Vidaza treatment as long as the numbers improve. What kind of problems were there in tolerating the Vidaza?

[BrianS]

Baille,

Thanks for your response!

As far as his problems tolerating Vidaza... initially, he couldn't tolerate the shots, so, he switched to IV. But, other than that, I can't say there were any specific, non-typical challenges...just a tough slog for an 80 yr old, feeling run-down for 7 months, waiting/hoping for a positive result.

Right now, though, he has a lot of spring in his step...partly due to the hemoglobin increase, and, more so due to the mental aspect of finally havingf some positive news.

Best of luck with your treatment!

[Birgitta-A]

Hi Brian,
Very positive that your father has responded !

Like bailie wrote it is recommended to continue Vidaza treatment as long as the patient is responding.

"We strongly recommend that patients be treated with azacitidine for a minimum of 6 months, and that in patients who achieve a documented response or stable disease ( sd ), treatment be continued until disease progression or unacceptable toxicity occurs. Azacitidine should not be stopped once patients achieve their personal maximal response, even in cases in which they continue in remission for a long period (that is, ≥12 months)."
http://www.current-oncology.com/inde...view/1871/1421
Kind regards
Birgitta-A

[BrianS]

Birgitta,

Thanks! That was the info that I was looking for.

[Kathy S]

My husband was on Vidaza for 9 cycles. After only 2 cylcle he went into complete remission last Septamber and we thought it would be easy sailing for at least a year. He continued on Vidaza. December BMB confirmed he was in remission. In January I started to notice that his counts were starting to drop, same in February (doctors paid no attention to it), March they had dropped significantly and so they called for another BMB. Confirmed he was definitely out of remission and his counts tumbled fast. His platelets last week were 7 and his HGB 7.5. He has had two platelets and one blood unit. He is now off Vidaza and was told at Moffitt there is nothing they can do unless he wants to try another clinical trial but his liver enzymes are too high for him to get into it. Knowing what we know now I wish he had come off Vidaza when he went into remission and gone directly to alternative medicine but fear keeps you going.
We have now turned to alternative medicine and he is trying to detox all of the poisons that were put into his body. Hind sight is just wonderful, but sometime it is too late. There is no match for transplant and he refused to go that route anyway. Best of luck to your dad. Not easy decisions as to what to do. It is all in Gods hand now and we follow His guidance.

[BrianS]

Kathy,

Thanks for your response, and, you and your husband are in our prayers!

Brian

[Sunnsurf@bellsouth.net]

I started Vidaza Dec2013 and after 4 months my counts were normal and I was feeling well. About 5 weeks ago my anc and wbc started dropping as well as my platelets going up and down. Is this a sign the Vidaza is no longer working? My anc is.3. Wbc2. Hgb13 plt80. I get very tired when exercising when I did not a couple of months ago. I am not a candidate for transplant. My Drs have not given me an answer. Just wondering how you know Vidaza has stopped working. Does it sometimes go up then down? Has anyone here had Vidaza work then labs fall then work again? What did you do after stopping Vidaza and at what point do they stop it? Would appreciate any info. Ann in Florida

[lfeinsmith]

vidaza has a very responce profile when it stops working one is left with clinical trials