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Thread: GBM and doing better than predicted

  1. #1
    Newbie New User
    Join Date
    Aug 2018

    GBM and doing better than predicted

    This is my first post here and I feel the need to give you a bit of personal history with my journey.
    As I read the posts here, I can sense the heartaches and fright; and rightfully so. I and my family have had (and still are) experiencing what many of you are feeling.
    I was diagnosed with GBM last July in the frontal, parietal, and temporal areas on the left side. It was an 8 cm tumor which was only partially removed. I had the radiation and Temodar and now receiving the maintenance dose. I am 68 years old; a former pastor and registered nurse (pediatric oncology and hospice).
    Due to my age, functional status, and extent of the tumor, I was given a very grim prognosis by the first oncologist. I switched docs and the first thing he told me was to never compare my expectations to the experiences of others. Each case is different. The first doc did not want to do the
    Temodar. The other wanted to go all out.
    To make a long story longer, I am doing very well now. I went through some very tough times with bleeds, seizures, speech, vision, and on and on. And it indeed was very tough on myself and my family. But there is always hope if you keep fighting. Keep fighting and keep praying. Miracles can happen
    By the way, my tumor is less than 1 cm now and continuing to shrink.
    Last edited by PastorSteve; 08-18-2018 at 10:59 AM. Reason: Spelling

  2. #2
    Super Moderator Top User
    Join Date
    Dec 2011
    Hi PastorSteve, welcome. I'm so glad to hear that you're doing well.

    Some doctors can be such downers, and it seems to particularly happen with oncologists, rather than neuro-oncologists. I suspect the reason is that neuro-oncologists have seen what's possible; they've all seen longterm survivors. Some of the regular oncologists have never even treated GBM before.

  3. #3
    Super Moderator Top User
    Join Date
    May 2011
    Way to go PastorSteve

    Sounds like you have a great attitude.

    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)

  4. #4
    Just saw this. I love your attitude....and am way glad for your results.
    67 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED.
    5/15/15: No NED this time. Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    3 yr. post SCT check up: all fine, no issues.


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