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Thread: Beginning of the journey

  1. #11
    Senior User
    Join Date
    Jul 2015
    Posts
    156
    Great to hear Nikos. Boring scans are a really good thing.
    DOB 1961
    Initial PSA June 2015: 30.47, Free PSA 6%
    Biopsy June 2015: 14 of 18 cores G7 (4+3), 2 of 4 cores G8, revised to G7 by Mass General, negative scans
    Laparoscopic (non-robot) RP done 7/21/15
    Path Report:
    Stage T3B, N0, M0
    Gleason 7 (4+3) with 5% tertiary 8 (5+3)
    Lymph nodes negative
    Margins: 2mm at the ink
    EPE, SVI, LVI, PNI all present
    3 month post-RP PSA 10/15 0.17, same 11/15
    Lupron and AR treatments 3/16, PSA <0.10 5/16, 8/16, 2/17, 8/17, 2/18

    Son diagnosed with GBM4 12/18/15 at age 18. Numerous treatments tried to no avail. He passed away 11/22/17 at age 20.

  2. #12
    Quote Originally Posted by NikosF View Post
    I'm happy to report another boring scan today.
    So glad to hear!!
    Diagnosis - Oligodendroglioma II
    Seizure on 3.6.15
    Surgery on 3.10.15
    Awake Surgery at Duke Medical on 7.18.15

  3. #13
    Have you ever had any testing of any of the tumor removed to see if there is some genetic difference in the makeup of your tumor Nikos? I think its just amazing to have been battling GBM for so long with minimal cognitive or physical deficits if any at all. I know I don't know you personally or even known you pre-GBM but reading your posts on here, one would never suspect what you have been through with how coherent and well thought out your replies and posts are. Not only do we need to be fighting for better and more effective treatments to battle GBM but also studying those who are surviving and beating the odds. Congrats on a boring scan, I know you and your family must be thrilled.

  4. #14
    Senior User
    Join Date
    Apr 2013
    Posts
    117
    Wonderful news....so pleased for you....keep on kicking.

  5. #15
    Nikos, I hope you know just what an inspiration you are to so many of us.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  6. #16
    Regular User
    Join Date
    Feb 2017
    Posts
    36
    Sept 25,2016 my 64 y/o husband also was dx with a hemorrhagic stroke, and then January 26,2017 had the episode of great weakness in left leg, extremely exhausted and fell twice within 24 hrs, they again transported him a 2 hr ambulance ride because the weather was to windy for the helicopter to MD Anderson/Cooper. That's when we were told of the gleoblastoma IV. The oncologist stated no way the first episode was a "stroke" because of recovering completely like he did.

    But anyway tomorrow he has his first follow up with the oncologist on the MRI done last week. This MRI was the first since his last treatment on 3/15/17. We are in positive spirits that we didn't get a call 1 or 2 days after to come back or to see the oncologist right away. I am trying to also be realistic though. another part of the anxiety for tomorrow is his oncologist is away for the month of April, and we see his partner. But at least we don't have to wait till mid May for the results.

    We did receive a copy of his last labs and there are a lot of areas higher. So another reason to be glad to have an appointment tomorrow.
    Thanks for listening.

  7. #17
    Super Moderator Top User
    Join Date
    Dec 2011
    Posts
    4,890
    You can and probably should insist on having an appointment the same day as the scan. We endured a week of waiting between scan and appointment just once, and it drove us all nuts. After that we insisted on the two appointments being scheduled the same day, and the cancer center understood and accommodated us.

  8. #18
    Super Moderator Top User
    Join Date
    May 2011
    Posts
    875
    Quote Originally Posted by GBMsibling View Post
    You can and probably should insist on having an appointment the same day as the scan. We endured a week of waiting between scan and appointment just once, and it drove us all nuts. After that we insisted on the two appointments being scheduled the same day, and the cancer center understood and accommodated us.
    +1 I always book the NO appointment for a few hours later on the same day as the MRI. The radiology report is not available yet, but I trust my NO more than the radiologists anyway. Places that insist on a gap probably want the radiology reports to be completed.
    Nikos

    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)

  9. #19
    Quote Originally Posted by GBMsibling View Post
    You can and probably should insist on having an appointment the same day as the scan. We endured a week of waiting between scan and appointment just once, and it drove us all nuts. After that we insisted on the two appointments being scheduled the same day, and the cancer center understood and accommodated us.
    So much this. It makes us feel so much better to get results the same day (even this last time when they weren't the best results). The waiting is incredibly stressful.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  10. #20
    Just a note to say how happy I am for you Nikos. Keep doing what you are doing.

    As an aside, normally we've gotten Mom's scan and the results on the same day. It seems to work better.
    Yet a few scheduling issues have happened with the doctor's load. In a few weeks, we are getting the scan
    done on a Saturday morning. Then we're going to the doctor on that following Wednesday. Not too terrible
    and doing anything on a Saturday at the hospital is heavenly. No major waiting.

 

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