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MDS Myelodysplastic syndromes

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Old Thu Mar 27, 2014, 12:41 PM
rar rar is offline
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Location: colorado
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clinical trail or best standard treatment?

I was just diagnosed with RAEB-2. They want to start me on a clinical trail, and then do a transplant ASAP. My understanding is that a clinical trail is usually the best standard treatment plus an unknown that could make you better or worse. It seems like they try hundreds of treatments that never become the new best standard treatment. Therefore it would seem like a clinical trail stands a small chance of being better than standard. My father died of AML 40 years ago. He was in a clinical trail and it made him miserable. My brother-in-law, a retired hematologist said if it was him he would go for standard. I realize there are arguments pro and con. I would like to hear them.

Thanks

Ray
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Old Thu Mar 27, 2014, 12:48 PM
Chad S Chad S is offline
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Hey rar,
My wife also has RAEB and we did a trial drug and then went straight to transplant. The drug was called SGI-110. She had very good results and went to transplant after 3 months. She was offered the standard protocol but the trial drug had far fewer side effects and they wanted her to be in good condition going into transplant.

If the trial drug you are considering is SGI-110 let me know and I can tell you all about our experience.
Chad
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Chad, husband of Danielle age 39, diagnosed MDS (RAEB-1) Feb 2013, BMT May 2013
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