bad news…AML

[pierre]

Well my mother’s results are in and her blasts have suddenly jumped to 29%, from 16% (last test, December). It’s now acute leukemia, and we haven’t even had the time to start any kind of treatment yet.

5q has ben confirmed through a FISH test, but not 21, although the doctor admitted that he didn’t know if 21 had been tested for. At any rate, 7 and 8 are definitely ruled out, which I suppose is a good thing, amidst all this horror. Also: the blood counts are somewhat lower but still good–actually, abnormally good for someone with AML apparently. The doctor said that meant my mother was otherwise in excellent cardiovascular health. She’s not feeling too tired either, though that may have to do with the fact that she’s been living on adrenaline for the past few weeks.

Dr Nimer is proposing a different chemo treatment from Dr Feldman and the choice is ours to make. It’s needless to say a crucial one, and we have NO idea how to go about it.

Dr Nimer is proposing Idarubicin and Ara-C (heavy dose, induction). In case of remission, maybe Vidaza and/or Revlimid for consolidation. Revlimid is definitely out now even though my mother has 5q because of the high blasts and the lack of track record in treating high blasts in last year’s Revlimid clinical trials. I’m still not sure I understand this–what’s the risk in trying out Revlimid anyway?

Dr Feldman is proposing Trisenox (arsenic trioxide) and Ara-C, as part of a clinical trial. I know that two people on this board are already taking part in this trial, and one of them has had great success with it. So of course this is influencing us. But Dr Feldman has mentioned a 30-40% remission rate, which is about the same as Dr Nimer’s numbers.

A question about clinical trials: any chance that doctors who are behind them are actively trying to recruit patients and are therefore somewhat lacking in objectivity in their recommendations?

At any rate. Thanks for any and all help.

[patti]

Pierre,

I’m surprised they’re saying your mom has AML. My MIL has greater than 30% blasts and she’s not considered AML. I suppose the difference would be if she has blasts in her blood. Mom only has 1% in her blood.

Either way, I’m sorry you have to make this decision and unfortunately, I’m not much help, but I know others will be.

Best wishes,

Patti

[lynette]

Pierre,
I’m sorry to hear about your mom. I was in the same situation 7 months ago. Twenty years of experience as nurse did not prepare me for the feeling of despair when I heard of my Mom’s diagnosis. The World Health Organization and CDC have redefined AML as anything over 20% blasts. Some doctors still use the old criteria of 30%(in the bone marrow).
Regarding your question of the doctors objectivity. I did not experience any feeling of pressure from the doctors. Rather, pros and cons were explained to us in a clear concise manner. They were very supportive .
My Mom is one of the patients on the Arsenic and ARA-C trial. You are correct to note that both the traditional induction and consolidation chemo and the Arsenic/ ARA-C protocol have no significant differences in rate of remission and/or duration of remission.
Given those stats, we chose the less toxic chemo. My Mom, 74 yrs, had no other health problems. Her heart, lungs, and kidneys were disease free, except for normal aging. However, the stronger chemo had more risk to damage these organs.
Thankfully, mom is in remission. We do not know how long it will last. However, she is very happy that she chose to try the protocol.
Good luck in your decision.
Lynette

[JaniceR]

Hi Pierre: My dad is the other one on the clinical trial of trisenox and ara-c like lynette’s mom. Lynette has been our rock. She is full of answers and support. My dad is now on his second cycle. The first cycle he had no reaction or side-effects; however, his blasts are still at 15% and none have gone into the blood (good). The doctor told him that he’s seen it happen where the blasts don’t go down significantly in round one, but after round two they see a drop and/or remission…still hoping. The doctor’s at NYP gave my father the option of doing the clinical trial in New York or staying at home and going to our local hospital for Vidaza. We chose the more aggressive approach with the best chance for remission. We were told the Vidaza would only be a maintenance program until it progressed to AML. I second guess myself everyday on whether we made the right choice and we won’t know for sure until he has his second biopsy after March 12. Good luck to you and your mom!

[pierre]

Thanks Patti, Lynette, and Janice. Updates soon.

[Author]

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