• Dual FLT3 mutations?

    Asked by AML_Mom on Wednesday, July 8, 2015

    Dual FLT3 mutations?

    We met with the transplant team on Monday and found out our 18yr old has dual FLT3 mutations. He has both ITD and TKD. He also has NPM1 and normal cytogenetics. Only 1-2% of all AML patients present with dual FLT3 mutations. He has a 90% chance of relapse, so it confirmed our choice of a BMT. Anyone here have any experience with dual FLT3 mutations? I know it is not likely, but thought I'd ask anyways.

    3 Answers from the Community

    • LiveWithCancer's Avatar
      LiveWithCancer

      I have no answer, but wanted to offer a big cyber hug. I just can't imagine being in your shoes. Praying for your son, his doctors, and all of those who love him.

      almost 6 years ago
    • geekling's Avatar
      geekling

      There are other sites to look for commonality too. Cancer Compass and one called Stupid Cancer which is mostly for the young I'm sorry to say. There are also groups on FaceBook.

      Best wishes to your family.

      almost 6 years ago
    • LisaLathrop's Avatar
      LisaLathrop

      I am a 6 year AML survivor with a single FLT3 mutation. Even the single is rare as well. What I can tell you is this....try not to let it freak you out. I had a full BMT with a 100% related donor match - my sister. My AML came back after 6 weeks in remission....because of the FLT 3. I then received only her leukocytes (mature white cells) in a much easier transplant. That did the trick for me and put me into long-term remission. I am also on a FLT3 inhibitor called Sorefabin (or Nexavar). Basically a chemo pill to block the FLT3. As I wasn't thrilled about being on this chemo pill for the rest of my life, my oncologist assured me if I went off of it, my AML would come back with a vengeance. There are so many new treatments and technologies these days. The BMT will be your cure....I hope they have found an excellent match for you. Try not to get discouraged ...live life to the fullest while you can, take it one day at a time and remember there is always HOPE! Blessings, Lisa

      almost 6 years ago

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