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Thread: intro

  1. #1
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    intro

    I joined this forum a little while back and have read a lot of the posts here. I wasn't sure where to make my first post until I got my pathology report following some surgery I had at the beginning of this month (October 2018 ): GBM IDH-wildtype grade IV -- so I guess that puts me here . I'm 50 years old - sort of the younger side for this as I hear it.

    At the end of July, the tumor didn't look like much in the first MRI, which I got after the emergency room thought I had a stroke. Really I had a robust tonic-clonic seizure, complete with black-out and temporary amnesia - my first seizure ever. I managed to avoid injury by somehow going down some stairs and getting into a comfortable chair after the black-out had started but just before the complete loss of control did.

    Based on that MRI, one doctor thought it might be low grade astrocytoma. Others had different (even non-cancer) ideas that tested out negative for the most part. Another doctor said there was really no way to make a call - and of course they all wanted to take another MRI after 6 weeks or so to see what would change. I started taking seizure meds. I also independently decided to start a "keto" diet.

    By mid September that second MRI showed that the tumor had grown significantly and was going to town on my left temporal lobe and cerebrum, including necrosis in that area. Since the keto didn't seem to be having the results I was hoping for, I started eating oatmeal. Funny - a third MRI on Oct 1 showed that there was no additional growth -- I was still in big trouble, of course.

    My "awake craniotomy" at the beginning of October went very well, 100% of the tumor removed by an incredible surgeon and team. Going in, I was sure I wouldn't be able to talk for some time after the surgery, but instead I wasn't able to shut up - haha. I just finished steroids (which I sort of blame for my talk-iness), and I'll be starting standard-of-care radiation and chemo therapy pretty soon. I'm trying to get into an immunotherapy based clinical trial.

    Before the surgery, even taking seizure meds I was having some fascinating experiences. Totally gone now, but I guess I can have more fun if/when recurrence takes place. I'm continuing to take seizure meds (that I'm not in love with) to keep me ready for something like that. Of course, I hope I never have another seizure like that one at the end of July.

    The surgery recovery and of course the steroids push down your immune system pretty hard. I'm coughing some and have had one positive test for tuberculosis. I had a second test -- waiting on the results, because maybe the first test was a false positive. Or maybe it wasn't, and it's something I've had for a while that had been kept down by my normally strong immune system. Bring it - haha. I just hope it doesn't disqualify me from the trial - wish me luck.

    Anyway - reading the posts it looks like there are at least few pretty long-term GBM survivors here - is that right?

  2. #2
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    Hi jqh1, welcome.

    Sounds like you've had quite a time, including the unfortunately-common experience of misdiagnosis.

    The keto diet can't work by itself, of course, but there is some slight evidence to support it, so unless you hated it it might be worth a try. (If you do hate it, though... the evidence to support it isn't very strong. Not many studies get done of treatments that can't be patented.)

    Are you being treated by a neuro-oncologist?

    The forum hasn't been very active these last few weeks, but we do have longterm survivors here, yes. One of our moderators, Nikos, is a longterm GBM survivor. He had chloroquine (an anti-malarial drug) along with the standard radiation and Temodar, and that might be worth discussing with your neuro-oncologist.

    Of course, if they have to treat you for TB as well, that's going to probably affect what they can give you when.

    There are also a number of longterm GBM survivor stories posted at virtualtrials.com, under the "Learn About" tab.

  3. #3
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    Thanks GBMSibling! I have a lot of learning to do and I will definitely go read the things you mentioned.

    Yes - I have been most recently talking to a neuro-oncologist and a radiation-oncologist. I'm very fortunate to live close to a large medical center with a bunch of specialists -- and even though I can't drive with a seizure risk, I can easily take public transport to see them (except that might be where I picked up TB - who knows. I've done a bunch of international travel in the past to places with higher TB rates, so maybe that was it. Really, I'm hoping that first test was merely a false positive )

    I should be clear - I can't say that I was misdiagnosed, because I wasn't actually diagnosed at all in the early stages. I think the emergency stroke procedure in late July, including tPA, which I got, is something they do because time is so critical with strokes. It's true that the tPA wasn't needed and would have complicated brain surgery, but at that time no one was calling for brain surgery yet, so "no harm, no foul" I suppose.

    All the doctors let me know that they were being speculative (including the doctor thinking about astrocytoma - who was also a neuro-oncologist). That uncertainty was the main reason why I didn't post here until now. It's easy for me to believe that all the doctors would agree if they all saw that second MRI - not all of them did, because I switched hospitals in between -- from a more generalized hospital to a cancer specialist hospital.

    In fact even now they're still working on it, including genetic analysis. I should have said that my report was initial and says "consistent with IDH-wildtype", it doesn't actually say IDH-wildtype. I suppose they're still tying that down.

    One thing that I appreciate is that none of the doctors has said anything like "you have X amount of time to live" or "get your affairs in order" (but I'm definitely getting my affairs in order, of course) - they're all very emotionally supportive. That said, I know this is a tough one and that the standard of care is not expected to save anyone's life. So that's why I'm going to try and be very active on learning about it.
    Last edited by jqh1; 10-28-2018 at 08:37 AM.

  4. #4
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    That's great; some doctors insist on dishing out the doom and gloom. It doesn't do a bit of good, and no longterm survivor arrives in their consulting rooms with "Longterm Survivor" stamped on their forehead, so really... they don't know.

    Ultimately the best hope for everyone is that new treatments hurry up and get developed. But you have many things going for you; total resection, a good team of doctors, and the ability to research and seek out the best treatments; all excellent things.

  5. #5
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    If you have not already done so, recommend:
    - Ben William's website https://virtualtrials.com/williams.cfm
    - the "Introduction to Brain Cancers" sticky thread at the top of this board.
    - this thread about supplements
    Wife died from a GBM, November 2012. The full story in this thread

  6. #6
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    Thanks!!!

    I found out the TB actually was a false positive, btw. Great to get some good news.

    I will definitely check out those links

  7. #7
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    jqh,

    Only thing I'd add is to be your own advocate and if you feel strongly about something - push hard. Doctors don't know everything and can be reluctant to try unproven things. If you do want to push though, be well informed. Learn to use Pubmed. I'm at 7 1/2 years post diagnosis and attribute some of my success to getting some off-label drugs.

    Try this movie : https://www.survivingterminalcancer.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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