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Thread: How to tell a child they have cancer (and should you?)

  1. #11
    Moderator Top User
    Join Date
    May 2011
    just to update the thread.

    he completed chemo is december. received a clear CT/PET in January and a clear x-ray last week. Next scan late June. Looks like we are out of the woods for now.

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  2. #12
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Pacific NW, USA
    Quote Originally Posted by NikosF View Post
    just to update the thread.

    he completed chemo is december. received a clear CT/PET in January and a clear x-ray last week. Next scan late June. Looks like we are out of the woods for now.
    Great news! Thank you for the update.

  3. #13
    Moderator Top User jorola's Avatar
    Join Date
    May 2014
    Best news ever!!!!!!!
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  4. #14
    Senior User IndyLou's Avatar
    Join Date
    Jan 2014
    Wonderful news! I'm very happy for both your son and your family! May he live a long and happy life!

  5. #15
    Experienced User Dead Man Walking's Avatar
    Join Date
    May 2017
    Lifelong resident of Lake Woebegon (Minnezotah), moved to Louisiana last November
    Just to add a data point to this thread, Annabelle and I see anywhere from 8 - 20 children with leukemia a week, and in all cases it's absolutely remarkable how well they cope with it. Obviously I'm not allowed to ask them if they're scared, how they feel, or any medical details of their condition, but I can't ever remember visiting a child with a bald head crying, or acting scared about their condition. Thinking about it for a second, this has to be a fairly major miracle (leap of faith?) that these kids accomplish, but it's the norm for all the kids I have seen.

    NOTE!! This should be clearly distinguished from telling a child that they have leukemia, and I've never been present for one of THOSE sessions.
    Last edited by Dead Man Walking; 05-23-2017 at 07:59 PM.
    05/6/16 2 pre-op physicals show low WBC & RBC
    05/16/16 Have BM biopsy - GULP!!
    05/22/16 [Birthday] Results are AML 22% blasts CD34 with 3:3 mutation, INTERMEDIATE risk
    05/30/16 Undergo 7-3 treatment
    06/??/16 TSHTF!! 7-3 doesn't touch AML, but knocks out immune system, infections nearly kill me. Blasts 65%
    07/04/16 Diagnosis now Refractory AML.
    Six 4 week cycles of azacitidine, 21 injections over 7 days with 1.5" long needle into gut AND below navel.
    11/05/16 Wife & I move to LA, North Shore Lake Ponchatrain - Infusion center 4 minutes away.
    Protocol 15 injections for 5 days M-F with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BM biopsy shows CD34 cells 6.9% above background level.
    Three 5 week cycles of azacitidine, . Life is good. Azacitidine is minor annoyance.
    04/16/17 BM biopsy shows CD34 12% above background, cycle dropped to 4 weeks. Change regarded as minor.
    Oncologist says my run is unprecedented.


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