Glioblastoma Multiforme grade 4 Survivors?

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RE: Glioblastoma Multiforme grade 4 Survivors?

by donnaruth on Wed Nov 28, 2012 09:55 PM

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I must be truthful -- this is an illness that is extremely unpredictable.  I just passed my 5 year "anniversary."  I'm still kicking - Had a scan this morning - no change, nuclear scan is "cold."  My doctor is very pro-active.  I take an iv of avastin every 11 weeks and probably will the rest of my life.  What are the long-term side effects?  I don't have a clue and I don't think the docs do either.  I have no idea why I'm still here and others who have been diagnosed after me are not.  What I do know is I enjoy every day.  Each of us (with or without the disease) should do that.  Don't stress about it, just enjoy what you have.  I know that sounds sappy, but if you focus everything in your life on the big "c," it won't be fun.  Keep up to date on what your doc is doing, find a good source (my oncology nurse is my personal "assistant" who helps me SO much when I have questions) and I try to stay off these boards because they can be so sad.  I only come here about once a year to make this post to let people know that the survival percentages are low, but someone has to be in those percentages.  It might as well be you!

RE: Glioblastoma Multiforme grade 4 Survivors?

by JoyceJJL on Wed Nov 28, 2012 10:27 PM

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Congrats on your 5th anniversary and your very positive post.  Stay the way you are thinking, we all should, including myself

RE: Glioblastoma Multiforme grade 4 Survivors?

by gbmhost on Mon Feb 18, 2013 11:16 PM

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my doctor came into my room after the biopsy.  the neurosurgeon had examined the tissue under as microscope, and told my doctor his prelimnary diagnosis of glioblastoma.  I could see a grim look on my doctor's face when he came in to share the news.  He asked me if I wanted to know how long I might have.  I told him that I did not want to know.  From my doctoral training in clinical psychology 20 years ago,I knew that glioblastoma could be devastating and rapid.  I did not want some number to influence me. I was going to fight hard That was 9 1/2 years ago.  Approaching my 10th year!

RE: Glioblastoma Multiforme grade 4 Survivors?

by csdiver on Wed Feb 20, 2013 03:41 AM

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Donnaruth Did you have a regrowth that got you on avastine? I am on it every 2 weeks now. Friday will be dose number 7 Chris

RE: Glioblastoma Multiforme grade 4 Survivors?

by Jamtc on Fri Feb 22, 2013 05:24 AM

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hello im new here just looking around trying to find more information on Glioblastoma. My younger brother (16) was just diagnosed with it six days ago. he got some of it removed with surgery and now is going to start radiation pretty soon. i was woundering if anyone recommended a good place to get a 2nd opionion.

RE: Glioblastoma Multiforme grade 4 Survivors?

by mltull on Fri Feb 22, 2013 07:10 AM

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Jamtc, so sorry to hear about your brother's illness.  If the pathology report came back that it is Glioblastoma, it is unlikely that you need another opinion on that diagnosis.   Regarding treatment options, absolutely it is worth seeking out the best possible treatment centers.  Where do you live?  I would recommend a major medical center, preferably a teaching hospital that specializes in cancer treatment, particularly GBM.  My husband is being treated at Duke in Durham, NC, which is an outstanding place for this treatment.  Others in this forum will recommend other wonderful treatment centers.  You have a difficult journey ahead, however your brother's age will help in his ability to fight back. The best to you and your family.  Mary Lou

RE: Glioblastoma Multiforme grade 4 Survivors?

by Jamtc on Fri Feb 22, 2013 10:36 AM

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Thank you for responding I live in las Vegas I was looking on the website of ucla. I had a question that even his doctor was surprised. He has had no symptoms related to GBM. Only reason it was found was because the had a soccer injury to his knee and didnt recover well and kept limping. How is your husband doing? Hopefully real well. And if you mind me asking how did treatment go?

RE: Glioblastoma Multiforme grade 4 Survivors?

by cpmty on Fri Feb 22, 2013 12:40 PM

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Anderson Medical center in Houston TX. is #1 in ca. I don't know how good it is good for GBM . I know people from Europe go there to treat their cancers. Of course there are other places and what you should reasearch is the best  for GBM. I wish you well and good luck. Please player its very benificial to. Have your church together pray for him wile he is treated.  I wish these people who had survived tell us what they do/did and what treatments have they gotten. so the rest of us... learn more.

RE: Glioblastoma Multiforme grade 4 Survivors?

by cpmty on Fri Feb 22, 2013 12:41 PM

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please tell us what you did...diets or..., what alternative tx. you had etc..thank you.

RE: Glioblastoma Multiforme grade 4 Survivors?

by Melevy3816 on Thu May 16, 2013 04:27 PM

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RUN. AWAY. FAST. Do some research, Burzinski is a quack using unproven, unapproved toxic drugs. He charges tens or hundreds of dollars for so-called "clinical trials that never produce results. Reputable researchers do not charge for their trials. In over 45 years of "trials" burzynski has only produced one report, which oncologists referred to as "scientific nonsense" Take a look at http://theotherburzynskipatientgroup.wordpress.com/ before you waste your money on this quack.
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