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AML with FLT3 marker

louzac
Posts: 5
Joined: Apr 2013

I was diagnosed July 26, 2012.  Had SCT from fully matched sibling on December 21 and am now almost 4 months post transplant with no complications. But the FLT3 has me very worried.  From what I read it's almost certain to reactivate the AML even after a transplant. The doctor considering putting me on Nexavar as a preventative measure which I've never heard of.  Anybody know the real truth about the FLT3 marker?  Does a SCT fix it?  Are there any long term survivors of AML FLT3?

DanH1966
Posts: 2
Joined: Jun 2013

I am 47 and was diagnosed with AML FLT3 August 6th of 2012. Had my BMT December 5th 2012. I have done remarkably well also. Fatigue tends to be an issue. I have done a lot of research on FLT3 patients and it is frustrating, there is so little information on anyone surviving outside of 5 years. Multiple relapses seem to be quite the norm for them to even live that long. So I am enjoying life as much as I can while I feel some what normal. I know each time someone relapses the body gets weaker from having to do chemo again, some go threw another SCT or BMT, in time it just too hard on the body. I just hope I am a freak of nature and that crap never come back Smile. I live life and plan life as if I am going to live to be 100. But like any cancer it taunts us at time because of statistics.

louzac
Posts: 5
Joined: Apr 2013

Thanks for the reply, I didn't think I would get any.  We have remarkably close cases.  Now at over 9 months I still don't exactly feel secure but have come across some more encouraging data.  I'm still not buying green bananas but I do have some hope.  Fingers crossed for both of us. Good luck.

DanH1966
Posts: 2
Joined: Jun 2013

I am having some side effects of a sorts. They are doing a MRI on my brain and possibly a spinal tap. But I am chugging along. I DJ and have continued to do so throughout my recovery after my 100 day mark. It really helps me feel normal, though it does ware me down really bad for several days after each event. Great to hear things are going well. Here is my Facebook page if you are on Facebook. As much FB can be irritating it really helped me get through the really tough time in the hospital and early days of recovery. I have met some great people who have been where we are now. https://www.facebook.com/dhilbun66 

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