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Diagnosed in April - Grade IV GBM

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  • Diagnosed in April - Grade IV GBM

    I'll be the first to post here, since I've been lurking on the Yahoo group for a while.

    My name is Aaron, and I'm a 41 year-old man in otherwise good health who was diagnosed with GBM in April of 2019. I had been feeling like I had a bad sinus infection for several weeks when I suffered a seizure in my home. Imaging revealed a mass in my right temporal lobe and post-surgery pathology confirmed grade IV infiltrative type glioblastoma with methylated MGMT status.

    The resection was nearly complete, and I underwent the standard 6 weeks of radio and chemotherapy. I just finished my fourth of six 4-week cycles of full-dose chemotherapy. In the meantime, I watched "Surviving Terminal Cancer" and read Ben Williams book. I'm getting treatment at Massachusetts general hospital in the US (I'm lucky to live in Boston!), and I've got one of the few neuro oncologists here willing to put me on the CUSP9 protocol. I'm also on a therapeutic ketogenic diet (3:1 fat to protein+carbs ratio) and I use CBD and THC tinctures daily.

    So far, my first two MRIs have come back clean, but I know that doesn't mean a damned thing with this disease. I try to focus my energy on living my best life and spending high-quality time with my family.


  • #2
    Hi Aaron,
    I know this is a new platform (forum) and there aren't many posts here yet but wanted to say hi to you & let you know that you've found a great place for information and support. I found this, as well as the support groups (caregiver group for me) an invaluable resource while my husband was diagnosed and treated. I found more here than anyplace else online and consistently updated with the latest research and clinical trials.

    I am a true believer in "knowledge is power" and throughout our experience it made us feel so much better being able to actively participate in his treatment and make decisions knowing the latest information, rather than from a place of uncertainty, fear and blind trust in the "experts". Much better to become an "expert" yourself & work with them!

    I live in Southern NH now but I grew up MA-16 miles north of Boston and I agree... you're lucky to be in Boston-the hospitals are absolutely fantastic!!
    I wish you all the best going forward...
    Take Care 😊 Christine

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    • #3
      Have you thought about Optune?

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      • #4
        Hi Al,

        I've been going back and forth about Optune. When I was first diagnosed and heard the median survival statistics, my attitude (even before I learned about cocktail therapies) was "throw everything at it." After more consideration and learning more about Optune, I'm not so sure I can handle the quality of life issues that wearing the device a minimum of 16 hours per day would create.

        As I've learned, long term survivorship is also predicted by the following factors:
        1. Age at diagnosis (I'm 41)
        2. Extent of resection (surgeon, Dr. Pamela Jones, was conservative in her estimate - 90%, but the radiation oncologist says he thinks she got more than 95%)
        3. Overall health (apart from the tumor, my overall health is excellent)
        4. Tumor location (right temporal - a region of the brain not responsible for much)
        5. Karnofsky score (I have no discernible deficits)
        6. MGMT methylation (mine is methylated)
        Needless to say, two clean MRIs in, the motivation to pursue Optune has diminished. I am, however, open to persuasive arguments in favor.

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        • #5
          Playing devils advocate

          Look at the paper that shows the dose response curve. If your compliance is 90% or above, the 5 year survival rate was 29%. The control group -which basically did everything (including avastin, vaccines, trials) except for optune, has about a 4% 5 year survival. Not great but a huge difference.

          The time to use it is now before you get neurological problems. If you "cure" the tumor, you want to live the rest of your life in good shape. If you wait for a recurrence and get permanent neurological problems then cure it, you will live the rest of your life with those problems. And as the trials have shown, it works much better the earlier you start and after a recurrence is not the best time. It is very slow and gentle and it won't turn around a major recurrence. It might be able to prevent that recurrence.

          I talk to a lot of brain tumor patients. Most say the same as you - that they perceive Optune is too much of a hassle and that they do not want everyone to know they have a brain tumor, so they don't want to use it. I can totally understand that. However, almost every one of them then tells me - OK - I will give it a try now, when it is obviously too late. I tell them not to bother with it - it won't help unless you do something else to turn it around at the same time, and they are usually out of options at that point.

          I had a friend diagnosed with a gbm last year and went through the same thing with her. An additional complication was that her doctor told her that Medicare doesn't cover it and it would cost her $25,000 a month! Which of course is not true. Medicare approved it recently, and even before that, Novocure did not charge people on Medicare. She finally agreed to try it and had a really tough first 2 weeks, then she got used to it and she says it is not bad now. Her scans have been stable.

          Hate to say but I think the underlying problem is that most people do not have experience with brain cancer. They don't get to see how bad things can become and how fast things can go downhill. Once you realize that, the inconvenience of using Optune is nothing compared to the inconvenience of using a wheelchair or not being able to speak.

          On another level - as an engineer I would think you would be fascinated with the concept of using a machine to physically fight the tumor. I know the chief engineer on the Optune project - he came out fishing with me a few times! We talked about how it was developed and what can be done to make it work better. They are working on it.

          And one correction - you do not wear it 16 hours a day. You wear the electrodes 24 hours a day and remove them once every 3 days or so just to take a good shower and replace the electrodes. There are times when you do not have it turned on. Like if you are taking a shower, you unplug the device from the electrodes but you leave the electrodes on. If you need to give a lecture, you can unplug for a few hours but you need to keep aware of the complaince rate and stay at 90%+ which means you can unplug for about 2.4 hours a day.

          And finally - cost should not be a barrier. Most insurances do pay for it. If they do not, Novocure will give you a huge discount based on your income and the Musella Foundation's copay assistance program can help with some or most of it. So far, of all of the cases we had in our copay assistance program, not one patient had to pay anything out of pocket for it (or for temodar or avastin).





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          • #6
            I'm new to this whole brain cancer thing. I just registered to this forum today and I'm helping my mom research her options. Can you use Optune if you have titanium coils in your head from an aneurysm operation? Do you have to continue using Optune for the rest of your life?

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            • #7
              Great questions. I am not sure about the coils. Ask your doctor. They will know what the coils are made out if. In another post you mentioned she had an mri which means the metal is mri safe so it probably would be ok with optune but check with the doctor who installed the coil. The package insert for optune https://www.optune.com/Content/pdfs/...IFU_8.5x11.pdf doesn’t specifically mention it

              as to how long nobody really knows but it is not forever. I would say at least 2 years but stopping is a hard decision If there is tumor present I wouldn’t stop. If no tumor. I would consider stopping but get frequent scans and start again at first sign of problem

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