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Thread: Desmo round cell tumors

  1. #1
    Newbie New User
    Join Date
    Jan 2019

    Desmo round cell tumors

    My son has been fighting this rare cancer for a year and a half. Does anyone have any experience with this cancer.? He has had two suregeries , chemo and full abdomen radiation. The cancer has come back and is doing another series of chemo.

  2. #2
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries
    I found that user ctb was diagnosed with DSRCT, giving some advice. This posting is from 10 years ago.

    He introduced himself with this posting,with several others responding:

    I hope this helps with this incredibly rare cancer. As ctb says, if you’re in the USA it is very important to get to one of the comprehensive cancer centers that can be found here:
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919

  3. #3
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    I don't know where he has been treated, but Saint Jude Children's Research Hospital might be a resource. And, maybe have a look at the National Organzation for Rare Disorders.


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