suzanne if you don't mind…

[pierre]

Hi there Suzanne (though anybody else is welcome to join in),

I haven’t posted in a while but you were kind enough to reply to some of the questions I had when my 68-yr old mother was first diagnosed with MDS, and again when she progressed to AML a month later.

My mother is currently taking part in an arsenic/ara-c clinical trial for high-risk/poor-prognosis MDS/AML at New York Presbyterian. Her biopsy after the first cycle was (fingers crossed) “encouraging,” and she just finished her second cycle. Her next biopsy in a week and we are bracing for the results.

I want to figure out what alternatives we have if she doesn’t achieve remission (which is a prerequisite for a mini transplant), i.e., maybe switch to a different induction treatment, or try out Revlimid if her blasts are low enough (she has 5q, along with 21, though the latter is deemed insignificant by the doctors it seems).

I am particularly interested in your treatment history and success since you seem to share many of my mother’s disease classifications. There are a few things I’m wondering about, though. First of all, is your MDS/AML secondary? My mother’s is thought to have come from her chemo treatment for breast cancer 13 years ago. Is 5q your only chromosome aberration?

More importantly–what exactly was the induction regimen which put you into remission? And–why did you not opt for a stem cell transplant, given the risk of relapse?

Finally–how important do you think the Zarnestra has been in your continued good health? Given your 5q, did you consider Revlimid as maintenance?

I realize that’s a lot of questions…but even a little bit of enlightenment would be much appreciated. Your success is such a source of hope for me, as I’m sure it is for a lot of people on this board.

[Suzanne]

I have my fingers crossed for you Mom also.

My case was/is “primary” I never had treatment for much of anything before. Yes 5q- was my only chromosone change.I was also Hypoplastic although they never mentioned that as being a factor in any treatment decisions. So much has been developed so quickly, they may have better alternatives for induction now. I had two rounds. Ara-c, Daunorubicin, & Etoposide the firt time-a 30 day rest and then Ara’c and I believe Daunorubicin again. I went into remission with the first round. Then they had me rest for about a month and put me in the experimental drug trial for Zarnestra for a year to try to cover the period that relapse was most likely.

As far as the transplant, there were several factors. I live alone and would have had to make a lot of changes to deal with the usual recovery difficulties with a transplant. My one sister was not a match. My docs would have put a lot of pressure on me if she had been-for a full transplant. I did not like the success statistics or the changes to quality of life I was hearing about at that time. And for me the statistics for success with the drug programs were about the same as the transplant. Although they still said that a transplant was the only way to be “cured”. In reality my “gut feeling” was not to go down that road. My dicision was to emphasize quality in whatever time I had and still fight as stong a battle as possible under that premise.
So far it has turned out to be the right decision for me personally-luckily. But the fact that my case was not secondary makes a big difference from what I read. And there have been a lot of developments in the transplant process-so my reasons over two years ago might not be valid today. They did tell me that they would talk about the mini if I ran out of alternatives, and they mentioned trying it with one of my children-as a partial match.(those were pretty far out alternatives to try-sort of “last ditch” ) But at that time Hopkins did not really recommend anything but a full match with a related donor

[pierre]

Thank you so much for your reply. It was very brave of you to go with your gut instincts when you had the word “cure” dangled in front of you, and I’m glad it turned out to be the right choice. So much luck seems to be involved in this disease and its treatment options.

Have your doctors mentioned the possibility of trying Revlimid at some point, given your 5q-? My mother’s doctors suggested it if her blasts come down enough, though the data on Revlimid is on low blasts before they go up, not low blasts after they’ve come down–which makes a big difference. But one doctor said using Revlimid as consolidation/maintenance for AML that grew out of 5q- MDS is “conceptually fascinating”–whatever that means.

[Suzanne]

They don’t talk about any treatments now. guess they like me are in thw wait to see what is available and best for my case if/when we have to deal with a relapse. So much new is happening all the time. I found revlimid in my notes talking about alternatives-but back when I was looking at treatments, there were no approved treatments and Revlimid was in trials and they were not running a trial for it a Hopkins at that time. so much has changed inwhat really is a short time.

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