What to do When the Vidaza Stops Working?

[mitch]

Hi, all. I've been on this board for awhile but I don't post much, although I do read the MDS and Drug threads every few days. A brief history of my experience with MDS:

1) Diagnosed RCMD Intermediate 1 in November 2013 (all three counts low, low blasts, no chromosome problems)
2) After three cycles/months of Vidaza via IV, my counts started to improve in March of 2014
3) Been on the "one week on/three weeks off" cycle of Vidaza for 19 months now
4) All three counts stayed in the normal to low-normal range from April of 2014 to January of 2015 (Vidaza working well).
5) Every month since February this year my counts have dropped steadily; for example, my Hgb went from 15.2 in January to 8.1 today. (WBC at 2.1, Platelets at 29)
6) Had my fourth BMB done two weeks ago and although my blasts are good (2.8%) I now have Trisomy 21 in addition to the low counts - first time a chromosome abnormality showed up

Now to the present day. I met with my doctor yesterday and she said the Vidaza has stopped working. I asked her about Dacogen or Revlimid and she said that the Dacogen works in much the same way as Vidaza so it probably would not be a good alternative. She also said the Revlimid is mostly for those with chromosome 5 problems, which I don't have, but that they have seen some improvement in non-5q patients with an EPO booster shot too. Since there aren't any clinical trials that fit my symptoms at my hospital right now (Rush, in Chicago), she's recommending Revlimid + EPO for my next step in this journey. She is also setting me up to interview with their transplant team.

Sorry for the long note, but there IS a question in here: Is there anyone out there that's had Vidaza quit working (or not work) for them but had success with Revlimid? Or, alternatively, went a different route after the Vidaza quit working?

Thank you for your time...

Mitch

PS: I'm posting this question in the Drugs thread too.

[Quester]

Hi Mitch,

Sorry to hear that the Vidaza appears to have stopped working. I've only just started on it myself and even then I'm not 100% sure about the whole chemotherapy thing anyway. I just hope you have some top-notch insurance as last time I looked Revlimid cost over $13,000 a pop (Vidaza is only around $600 a time and that to me is still crazy money)!

Good luck with your search for an alternative and please let us all know how you get on.

[mitch]

Thanks, Quester. Yeah, I'm still working on financial assistance for the Revlimid since I've already exceeded my drug coverage cap on my insurance. It IS crazy money. Will update when I can.

[Barb M]

Have you considered participating in a clinical trial? There was one that was using Revlimid and Promacta combined.

NIH also has a trial going on for Promacta, and I believe they are still recruiting. It did not work for me, but it did work Sally Cs husband and he has been transfusion independent for many years.

In clinical trials you don't pay for the drugs.

Go out to clinicaltrials.gov and search. Or contact NIH at barbara Weinstein at weinsbar@nhibi.nih.gov.

[Marrowforums]

The Myelodysplastic Syndrome Clinical Research Consortium is recruiting patients for a study of MDS patients who have not responded to Vidaza or Dacogen, or who have stopped responding.

Study participants will have blood drawn for the study at the time of their routine local doctor visit, at no cost. The study is being run at Weill Cornell Medicine (NewYork-Presbyterian), where MDS expert Dr. Gail Roboz works.

Details and links are at the CRUSH!!MDS website.