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Thread: 16 year old son with T cell ALL

  1. #1
    Newbie New User
    Join Date
    Apr 2017

    16 year old son with T cell ALL

    My 16 year old son was diagnosed with T cell ALL in early March. His leukemia is proving resistant to chemo. He has failed induction and now seems to have failed consolidation. His WBC has plateaued at 1 and the latest flow cytometry shows 90%+ blasts. We know he will need a bone marrow transplant, but now it seems that he may not be able to get to the 0.0 minimum residual disease (MRD) needed for a transplant. The next move is really intense chemo with horrid side effects that might not even work. Has anyone been in this situation before? I just want to make sure we know all our options. Thank you!

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Pacific NW, USA
    Sorry to hear this. Where is your son being treated? If it is not at a National Cancer Institute designated cancer center, I would travel to the nearest one to obtain a second opinion on both diagnosis and treatment. At this point, it has at least the potential to be a misdiagnosis. The NCI centers employ the best and brightest, and, perhaps more importantly, conduct research via clinical trials so as to possess the latest in treatment paradigms. Any T-Cell malignancy is a challenge, so patients and loved ones need to be certain that both diagnosis and treatment are cutting edge.

  3. #3
    Experienced User
    Join Date
    Sep 2012
    Phoenix Az.
    My son is 5 years since diagnosis...3 years of treatment...He never had to have a BMT, we were randomized on a clinic trial for Nelarabine Chemo... He came in at a very Hi - count like your son. Research Nelarbine, see if it may be an option for him..I know we react differently to meds... Hope you find some answers that help~ Tom
    Son Jacob - 20 years old
    Diagnosed Acute T-Cell ALL July 15th 2012
    Induction Phase from 7/17/12 to 8/15 ( Day 29) Hit Remission couple days prior
    He's on a "Clinic Trial" and qualified for Nelarabine in his Consolidation Phase/Maintenance Phase
    Started Consolidation 8/19/12 - Ended on 11/7/12
    Started Interim Maintenance on 11-28-12 - Ended on 1/23/13
    Started Delayed Intensification on 1/23/13
    Started Maintenance Arm B on 4/10/13 ( It will last 180 days
    Last Round of Nelarabine on 10/25 /13 - Port Removed on 10/30/13
    Started Maintenance Arm B ( No Nelarabine) on 12/16/13
    Continued maintenance ( 90 day lumbar with IT Chemo - 30 Day Vincristine push)
    Will have last Lumbar with Chemo in September 2015
    Off treatment in December of 2015


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