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Thread: Streak of stable MRIs ended

  1. #1
    Senior User
    Join Date
    Apr 2013
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    112

    Streak of stable MRIs ended

    I had growth on the latest MRI, enough to warrant treatment. The suggested treatment is Proton therapy for six weeks and then the chemo to follow. I was disappointed greatly but not surprised. First I do the dance with the insurance company and then if covered I will need to check options for boarding assistance. Because of tumor location at hippocampus the care team believes proton therapy is my best option, do not recommend any other radiation so I feel backed in a corner depending on what the insurance company will do. Send me positive thoughts and prayers as I maneuver through maze. UGH

  2. #2
    Iím so sorry to hear this. I know itís a scary time for you. Hopefully it will respond to chemo and radiation for you.

  3. #3
    Senior User
    Join Date
    Apr 2013
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    112
    I apologize because I can’t remember if anyone here has had proton radiation. If anyone has experience with the proton therapy, please let me know how you did as in side effects and how I may feel from your view. I know every patient is different but I am curious to hear from a patient.

  4. #4
    Super Moderator Top User
    Join Date
    May 2011
    Posts
    863
    RACL,

    sirry to hear about this development. If your insurance doesn't want to cover it, speak to the social worker where you are being treated about patient assistance funds.
    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)

  5. #5
    Senior User
    Join Date
    Apr 2013
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    112
    Quote Originally Posted by NikosF View Post
    RACL,

    sirry to hear about this development. If your insurance doesn't want to cover it, speak to the social worker where you are being treated about patient assistance funds.
    Thanks for your reply Nikos. The insurance approved after three requests, which is about normal. I was prepared to fight, I have fought for many patients in the past. Being a nurse I find it easier to fight for others than for myself, but I never give up. My tumor is right temporal and is backed against the hippocampus which of course is my memory bank. I have some memory issues as I search for words at times and my care team believes that proton therapy will do less damage. I am scheduled for my introduction/acclimation meeting on June 21. I should begin my thirty days treatment about two weeks later. After that I will do the chemo route again.

 

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