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Thread: Question about Stage 4 cancer

  1. #1
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    Question about Stage 4 cancer

    I just started Chemo / Radiation for stage 4 Glioblastoma. But is not a hereditary form, they said it is environmental. What can be the causes of it, if any or chances of it coming back? Thankfully, it was all in one spot and not spread out, they they were able to get 90%+ out right away. Doctor are vague on this, figure some people who havew gone through this may have more real life experience.

  2. #2
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    Hi Brian, welcome. Most GBMs have no known cause. There is a theory that some are connected to serious head injuries. However, most people with GBM have never had a serious head injury. It is also thought that people involved in manufacturing polyvinyl chloride (PVC, the stuff plumbing pipes are made of) may develop GBM. Beyond that, though, it's not known what causes it. People of European or Asian descent are much more likely to develop GBM than people of other ethnicities.

    After a GBM is removed, it is always assumed that some of the cells have been left behind. These are then attacked with radiation and Temodar.

    GBM frequently recurs, at which point it is treated with a second-line drug, such as Avastin.

    Are you being treated by a neuro-oncologist? They are the most knowledgeable doctors when it comes to treating GBM. Other doctors rarely see a case of GBM, so they are not experienced at treating it.

  3. #3
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    Well, I did have 5 concussion when I was a kid, drove my parents crazy lol. 45 years old now. Yes, I neuro-encologist, he has 20 years experience. But I am glad just know what it is now, been dealing with this pain for 8 years now, old workmen's comp doctors told me 8 years ago that it was fibromyalgia.

  4. #4
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    Wow, that's a long time to go without knowing what it is.
    We have a moderator here who's survived more than seven years so far since diagnosis with GBM. In addition to the Temodar and radiation, he also had chloroquine when he was first diagnosed, which is a drug for malaria but seems to have worked well for him. If I had GBM I'd ask my doctor about perhaps taking chloroquine.

  5. #5
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    Never heard of that drug before, I will have to research it, can never have enough good information. At least my doctor expect me to live, only thing they are not sure on at the moment is how much use of my right hand I will get back, last bit of the tumor left is on the part of the brain that controls the motor function of my right hand.

    And yes, it was a long time to find out what it really was, the doctors looked at me weird when soon after 6 hours of brain surgery I told them that is the most pain free I have been in 8 years.

  6. #6
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    Maybe you'll get more function back in your hand after the radiation is finished and the brain swelling that's associated with radiation becomes less.

  7. #7
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    I hope so, I can tell already that is slowly coming back, felt good to tie own shoe again. Amazing how a little thing like that could make me so happy.

 

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