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Thread: Surgery again:(

  1. #1
    Experienced User
    Join Date
    Jun 2013

    Surgery again:(

    It has been a long time since I last posted. My Husband has not had any regrowth since his last surgery in 2014. He has been on Tocagen since then and it has worked very well for him. Unfortunately he has terrible diarrhea for 2 weeks out of every six. About 6 months ago he decided to go off the Tocagen trial and now he has had regrowth. He will be having surgery on Monday. He will have the tumor removed and fresh virus injected because he is going back on the trial. I am very worried that he will have more damage and lose what little quality of life he has. Right now he has no movement in his right arm and limited use of his right leg. He has short term memory loss and is very difficult to reason with. I am very afraid that if he losses more I will no longer be able to take care of him at home. This disease is so terrible! Even though he has survived a long time by GBM standards it has taken so much of his life away from him. I am just a nervous wreck right now, not knowing what the future holds for us.
    19 May 2013--MRI, mass detected on my Husband's brain.
    20 May 2013--Surgery to remove most of the mass. Mass diagnosed as GBM. waffers placed in his wound.
    June/July 2013--radiation and Temodar started.
    20 Aug 2013---MRI baseline
    14 Oct 2013--MRI Stable
    17 Dec 2013--Several suspicious spots seen, wait and watch
    17 Feb 2014--Several suspicious spots seen, wait and watch
    21 Apr 2014---Reoccurance
    16 May 2014---Second surgery.
    16 June 2014--Started the Tocagen trial.
    8 July 2014--stroke
    29 Sept 2014---Shrinkage of tumor seen on MRI!
    11 Feb. 2014---No visible tumor seen on MRI!
    16 Dec. 2014---MRI shows shrinkage of tumor margins continuing. Separate spot seen, could be new tumor or continued stroke damage.
    1 Jan 2019---Continued Tocagen until early 2018. Diarrhea became too severe and he discontinued the trial. 2 clean MRI and then regrowth confirmed 7 Jan 2019. He will be having another surgery, injection of virus and restarting on Tocagen.

  2. #2
    Super Moderator Top User
    Join Date
    May 2011
    Hang in there. Have you thought about getting another opinion before committing to this path?

    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)


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