Monday, June 4, 2012

Decitabine or Midostaurin??? | The Leukemia & Lymphoma Society ...

Hello, everyone,

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?? I'm looking for answers, words of wisdom, descriptions of experiences or anything else you might share.?

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?? My brief history with AML/FLT3-ITD began at Thanksgiving.? I had 4 inductions and 14 weeks in the hospital before finally achieving complete remission in April (2% blast count).? My follow-up outpatient treatment consisted of Sorafenib, 800 mg per day.? That kept my blast count down until two days ago, when it jumped up to 18%.? The platelet count dropped to 64 (normal is 150-450) and appears to be dropping further....I developed some nasty bruising when I mowed part of my lawn this morning.

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? My oncologist, Dr. Parker, will be considering two options for 'salvage' treatment.? The first is decitabine, which he suggested.? I've read that the standard therapy with that drug goes for five days.? However, I've also read that research is showing it to be more effective with a 10-day regimen.? Survival rates are as high as 40% for up to seven months, depending on which study you read.

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? Any thoughts or experiences???

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? The other option, which I've researched briefly and intend to share with the oncologist, is Midostaurin.? My reason for looking at that drug is that I'm located in the western US, and my hospital is affiliated with the SWOG (South West Oncology Group) which runs all the clinical trials in this region.? Dr. Parker has said he is open to considering anything appropriate (for AML/FLT3) which is being studied by SWOG.? I found the Midostaurin trial here: http://www.swog.org/visitors/ViewProtocolDetails.asp?ProtocolID=2122

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? Full compliance with that trial's regimen would require a 5th induction attempt with Daunorubicin and Cytarabine chemo to knock the blasts down, followed by a consolidation round and then Midostaurin for follow-up care.?? Dr. Parker has already said he'd support my decision to go for a 5th round, but he was deeply concerned about the risks and whether I'd survive it.

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? Once again, any thoughts or experiences???

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? Thank you to everyone here who's taken time to share wisdom or boost my morale.? I couldn't have made it this far without you.

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??? Bob

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