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    When my brain cancer returns....
    Lizardoli12 posted:
    I talked with a nuero oncologist last week after I got my staples out from plate surgery, he is not my regular oncologist, but one in a big city. My oncologist set the meeting up because I had and still have a lot of questions on WHY things happen in this cancer and what is next.

    And another doctor, telling me it will return. There is only one protocol for my Oli that I am finisihing up now, so I asked what next and that is what we are trying to set up, the what next is monitor with MRI's every few months to see if any enhancement shows up and then go into a study that sounds almost as risky as the potential cure!

    It would be a study that opens the Blood Brain Barrier for a short time and then they inject 3 chemo meds, the trick is that a tube would be inserted in my grain and up into my brain for delivery (owwww) of course under a general.

    Reading the risks that could happen beyond surgical issues made me cringe though, like possible stroke, heart attack, other things entering the brain when the blood brain barrier is down, deafness and vision issues! So I am reading the phase 2 part of the study and thinking if it is worth 12 months of agony to buy a few years if any time?

    I tell my friends to think about it, if you had that choice? Would you fight knowing at the time that there is no cure? Would you opt out and live life until you couln't anymore? What a dilema for a person like me who wants cold hard facts!!!! Maybe if I get a few years rest before it comes back, I would feel diffferently? I don't know what to think about it all, as my oncologist said now we are making it up as we go along since there is only the one protocol I finished and it almost killed me!

    Such is life right now and I should just focus on the here and now and no regrets kind of deal, but it is hard to do!
    leahquestions responded:
    Hi, You are great.....I wish I clould tell you what to do... It may be worth living longer but not in agony.. I have locusts in my head and don't see very well. You and I know that the time will come when we have to say either let me die in peace or let me struggle in misery... I refuse to be on life support for too long , I saw that too much with my mom and a friend of mine suffered dearly-- I can't do it--- let me live with what I have- of course I've some intentions of trying to enjoy what is left but I don't plan on going anywhere right now...You'd be a hero if all this brain stuff worked...if you can enjoy what you have ,, you know I think once you're in the hospital it's getting out that's the trick... I'm glad they have alternatives for you.... My lungs are hurting this am...... but I'm glad I can still breathe. laura
    tokillanarf responded:
    I understand the thoughts you are going through. Three years ago I was diagnose with an OLI. I had surgey and six weeks of radiation. The greatest day of my life was when I read the MRI report stating that there was no tumor. I had felt the world was lifted off my shoulders. It was a second chance in life. However I have heard from the three doctors that it will return most likely. I will have to go through another round of radiation treatment. Only thing that would make that change is if there is a cure. When I think about it. I think I do not want to relive that experience again. It was hard laying in bed, thinking that I am going to die. Today everybody tells me I have nothing to worry about. I say, I do. The fear that one day this burden is going to come back. That alone is enough stress that has wiegh a lifetime of worries on me. As to what you should do? I know, I am a lover of life and this world. I would do anything to give me one more extra day of life.
    To be around my wife and kids is the most important in my life. So i say like Jimmy V. said never never stop fighting. Everyday we live makes us that much stronger. So enjoy the gift you recieve (life)
    leahquestions replied to tokillanarf's response:
    I am so delighted to talk to another cancer patient, thank you.They tell me I'm terminal...I didn't wake up dead this morning, yehaw....There's a 30-40% chance of brain cancer coming back so they say but my sister in laws dad had NO recurrence for 20 years, yes 20 years.. Everyones dies and the day I die it'll make me right lol thank God it's only once... My name is Laura, I'm 49. I went into the hospital for a heart procedure and they couldn't fix my very diseased heart, i was the othetr 5% they said, instead they told me I had lung cancer which went into my lymph nodes then within a week I was having seizures. My whole brain -- 3 large tumors and 12 small and they said they couldn't tell how many more because the brain scan only picks up 1 cm or more tumors..I was seeing so many Dr.s and no one could tell me why I was shaking , why I had a bobble head at the time why I kept loosing my balance, pathetic..until the seizures they got smart and I got that brain MRI. How drastic has my life changed..They gave me a few months give or take a couple haha.. I'll never forget that week , I was consoling my Dr.s I was and listeneing to my family saying it'll be alright... I'm now getting ready to get out of all this snow on Jan first,, my sisters and I driving to Florida for some fun as much as I can do , as weak as the chemo makes me.. I had 3 weeks of radiation everyday , the whole brain,every 3 weeks, it got really sickening as I could smell what I thought was my brain getting zapped/burned.. I am driving short distances now but only on good days...I will not be driving to Fl, but I will be playing my ninetendo DS on the way lol. Do you have any brain damage or do you repeat yourself a lot or has anything changed like that? It has with me,it's okay my family understands but it would be nice to write to someone else who has it...I'm still on my own for now. Merry Christmas and Happy New Year ttyl Laura

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