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Need help with decision on treatment choice

Home Demo forums Patient Message Board Need help with decision on treatment choice

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    Hi, everyone. I haven’t posted in a long time but I read the forum on a regular basis and greatly appreciate all the info and positive, supportive comments. I am facing a really tough decision and would appreciate any thoughts or feedback you might have.

    I have secondary MDS — at least RAEB-2 — with complex cytogenics (loss of chromosome 7; inversion of long arm of chrome. 3 and others) and a very poor prognosis. I am 53, got the MDS from breast cancer chemo two years ago and am otherwise fit and healthy.

    I came to Fred Hutchinson in Seattle in late December for a cord-blood transplant. They were just launching a new protocol in conjunction with the Univ of Minnesota, which has been doing these exact cord-blood protocols–with significant success–for a while.

    Unfortunately, my blasts had climbed too high to join the study by the time I arrived from DC (5 percent to 13 percent) so I did a week of induction chemo. Unfortunately, the induction chemo did not lower my blasts enough for me to qualify for the study. They are supposed to be under 5 percent and are still at 7 percent.

    The senior staff will discuss my case on Wed as there is no consensus yet on what to recommend for me. Here are the options they will consider:

    * Another round of induction chemo with different chemo with hopes of getting to 5 percent for transplant.

    * Vidayza to see if it would eventually lower the counts to 5 percent for transplant.

    * Looking for a different cord-blood protocol at a different transplant center that allows 7 percent blasts. (Hutch only has one protocol approved, the one that requires less than 5 percent blasts.)

    There is a fourth possibility-finding a Phase 1 trial somewhere–that isn’t chemo-based since my disease seems so chemo-resistant. One Hutch doctor mentioned Telintra, M-tor inhibitors, and farnesyl transferase inhibitors. He also suggested Dr. Azra Raza in Worcester and another doctor in Texas.

    Any thoughts or leads are much appreciated. My Hutch doctor has said that there is a lot of disagreement on which way I should go and hopefully they will reach a consensus on Wed., but I want to do as much of my own research as possible before then.

    Thank you for your thoughts. This is a great list for which I am very grateful.

    Ms. Simon Chaitowitz


    Hi Simon: My dad just finished week one of a clinical trial at New York Presbyterian Weill Cornell Medical Center. He has RAEB – 15% blasts and the chromosome 7 deficiency that you have. He’s on arsenic and ara-c.. two weeks on, two weeks off. Lynette’s mom did the same trial and is now in remission…same doctor at NYP. The chromosome 7 abnormality makes you drug resistant and that’s why we opted for the arsenic… which is supposedly the strongest and used for acute leukemia patients. He has not had any side effects from it whatsoever. We are hoping and praying that it’s working and doing what it’s supposed to be doing, but we won’t know for certain until they do the bone marrow biopsy after the third week sometime. His blood counts are reacting the way they should, so it’s killing the good… let’s just hope it’s also killing the bad. I heard that Vidaza is an option, but it’s just not as strong and doesn’t have as good results as the arsenic & ara-c. I also read about the telintra.. that’s the trial going on in Texas, I believe. Sign up for google alerts and enter MDS high-risk or myelodysplastic syndrom high-risk and you’ll get up to the minute ground-breaking news and the latest trials. All my best, and good luck.

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