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Those of you who have followed our posts for the last three years know that we were also told that if Vidaza failed that Dacogen would probably not work. So we went through three clinical trials in-between. Last August one of our doctors recommended hospice, another clinical trial (and when I asked about Dacogen) or Dacogen which he said he did not think would work. He told my husband since he had progressed to AML that he had "weeks not months."
So we went home devastated and waited for the worse. At the time my husband was in a wheelchair, on oxygen 24/7, and could barely pull himeself out of bed. Over the next few weeks, he rallied and said that he wanted to try the Dacogen. We went to a local oncologist (who said that he only gave the Dacogen a 2% chance of working but we felt 2% was better than 0%) and began Dacogen in August of last year.
On Monday (God willing) my husband will have his 12th round of Dacogen. He has been off oxygen for months and no longer uses a wheelchair or cane (which I really wish he would use). He has remained fairly stable these last eleven months, needing monthly transfusions and occasional platelets. Last Monday his platelets were 53,000 (we are wondering if this was a lab error but we'll know this Monday when he goes in again for labs, doctor visit, and cycle 12 of Dacogen) which is a three-year high. He also did not need a transfusion and his last one was over a month ago.
We of course are cautiously optimistic but we've learned with MDS and now AML that we are on one heck of a rollercoaster ride.
We just try to enjoy each and every day. We have been able to travel, go to car shows (my husband is an antique car owner and lover), and although we don't have the quality of life we once did, it certainly beats the alternative.
And I am not naive, I do know that what works for one doesn't work for another. But I just want to stress that you need to be your own advocate, speak up, suggest, don't give up, and keep trying. I know there are others on here that had bad results from Vidaza and/or Dacogen. But we have been blessed that at least for my husband, Dacogen has given us some additional time together.
God bless and keep the faith.
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Linda, Al's wife, 75; dx MDS 5/2010; Vidaza 6/2010; ARRY614 & Sapacitabine clinical trials at Emory, no results, stopped 12/2011. Had BMB at NIH on 6/5/12, blasts 10-15% so he's not eligible for trial there. :eek Promacta trial, Tampa, blasts 25-30% 8/17/12 AML, trying Dacogen now and praying.
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