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Thread: My Wife Diagnosed with GBM-4 on May 29, 2018

  1. #1
    Newbie New User
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    Jul 2018
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    My Wife Diagnosed with GBM-4 on May 29, 2018

    Hello everyone. I really don't want to be here but yet, here I am. I am joining today because my wife of 35 years has been diagnosed with a grade 4 Glioblastoma Multiforme. She woke up on the morning of May 29th with what we thought was a migraine. It didn't respond to any medications we had in the home, including some Hydrocodone left over from her C2-C7 spine surgery a year ago. I went to see her PCP to have something for a migraine called in, and it was 2:30 before I could get it picked up and give her a dose. It had zero effect. By 4:30 she was in terrible pain and I took her to the emergency room. Morphine had zero effect on the pain. By 10:00 that evening, after a CT Scan and an MRI, we knew she had a brain tumor that was most likely malignant. The anti-inflammatory steroids she was given finally brought the pain under control.

    On May 31st, she was transported by ambulance to the Piedmont Brain Tumor Center in Atlanta where Dr. Chandler (NS) and Dr. Dunbar (NO) consulted with us and walked us through the surgery and treatment options. The next day Dr. Chandler did a full resection of the golf-ball size tumor. On June 2, we went home. My wife has recovered fully from the surgery and feels as good as she felt before the surgery. Her tumor was in the right occipital and parietal lobes. She lost peripheral vision from the left side of both eyes, so she is not allowed to drive. She also has a bit of an unsteady gait sometimes, and often struggles to get her words out.

    Her NO has prescribed the STUPP standard of care and she will begin the Temozolomide and Radiation treatments next week, with her first dose of the Temodar on the night of the 15th and the first radiation treatment on the 16th. We are considering the Optune device but our insurance (Humana) has denied our initial request citing that it is still experimental. So, I would appreciate hearing from anyone who has been using the Optune and learn of your experience with it. I am not convinced that it is worth the trouble for no more improvement in survival than what it says it has achieved in only a small percentage of patients. And at $21,000 a month plus the requirement to sign a lengthy service agreement, it seems like someone is profiting handsomely at cancer patients' expense.

    We have been told that the genetic marker testing of her tumor revealed that mutations in the IDH, MGMT and ATRX genes were not detected. From what I have been able to gather from online research, that would seem to indicate a shorter survival and a reduced response to alkylating chemotherapy drugs like Temozolomide. I'd love to hear from others about these markers and what this means.

    I wrote on her CaringBridge site: "It is said that when Buffalo sense a storm approaching, they run toward it instead of away from it, because it gets them through the storm more quickly. Every fiber in my body wants to run from this storm because I am afraid of it. That's my human nature. The only thing keeping me from running away is my trust and faith in the One who "...has told every lightning bolt where it should go". My wife and I are persons of deep faith in Jesus Christ, and we know that God is bigger than this tumor and it has certainly not surprised Him. We are trusting in Him for "strength for today and bright hope for tomorrow"! I know that her healing is in His hands and I believe that He has given mankind the wisdom to discover some of these treatments through the knowledge of medical science He has chosen to reveal to mankind. What is in my control is to love her, get her the best treatment we can find, and make sure she knows that I am right beside her every step of this journey.

    I hope I can contribute to this forum as a good listener and sharer of information as all of us here run towards the storm together.

  2. #2
    Super Moderator Top User
    Join Date
    Dec 2011
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    Hello, Overuld, welcome. I'm very sorry to hear of your wife's GBM. It sounds like you folks have done your research and are coping. One thing to know is that your wife's brain is still reacting to the surgery, so it's still possible the things she's having trouble with may improve. (Though possibly not till after the radiation.)

    We've had a couple people on the forum recently try the Optune device, and as far as I can tell no good has come of it. (Years ago, when it was called the Novocure device, I asked my sister's NO about it and he said "It's harmless.")

    I am not a medical person, but I honestly think it's used because of the lack of other options.

    One of our moderators here is a longterm GBM survivor, and he had chloroquine along with the Stupp protocol. It's an antimalarial drug. I would mention it to the NO.

    MGMT methylation is associated with longer survival, but statistics mean nothing to the individual. When I took my sister to the NIH in Bethesda, an NO there told me he'd seen longterm survivors with every kind of negative prognosticating factor.

    And, as I'm sure you've been told, the full resection is in her favor.

  3. #3
    Super Moderator Top User
    Join Date
    May 2011
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    868
    There is a lot of good information on off-label drugs here : http://astrocytomaoptions.com/
    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)

 

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