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Mom with glioblastoma stage4

Posts: 2
Joined: Sep 2017

My mom was diagnosed in March 2016. She had the surgery, followed by radiation and chemo. Then was on chemo for 1 year, one week on...4 weeks off...etc. Her last chemo treatment was in June 2017. She did great that whole 18 months! With 3 months of nothing she had her follow up MRI early September 2017 and it showed another tumor starting. Her options are only chemo or take part in a study. Can anyone tell me how this next phase can play out? What can I expect? I know survival rate is not the best for this cancer, but I feel like she has done so well up until now.  Or is this the usual course of glioblastoma?

Posts: 1
Joined: Sep 2017

My mother was diagnosed with a gliosarcoma in July 2010.  She had a tumor removed in December of 2009 and the tumor wasn't diagnosed as a gliosarcoma until it came back and filled in and was spreading in other areas of the brain.  She had the tumor removed and had radiation followed by Gamma Knife.  There was a new chemo that was tried that had very little side affects.  She was on the chemo for one year and they decided to give her a break for a little while.  After 4 months she had an MRI and it was showing that the cancer was coming back.  They didn't need to do an extraction but did the Gamma Knife again.  My mother had decent quality of life for about 4 to 5 years with chemo.  From what I have read the location of the tumor has a lot to do with how it progresses.  My mother passed away in February 2017.  She was a fighter and refused to give up to the very end.  I was very blessed to have her as long as I did.  I wish you and your mother well.  Keep your spirits up and that will help her also.

Ralph1's picture
Posts: 2
Joined: Sep 2017

Hi Joanne

Your mum has done well so far and I hope she continues to beat this although I know recent news must be tough; try to stay positive! I have gone through similar treatment profile to your mum, except diagnosis about 7 months later, and our profiles are remarkably similar. i got all clear about 6 weeks ago and the first follow up scan is due in about a week or so - beyond that, keep monitoring and keep fingers crossed .... and stay positive!!

I know that GBM does repeat and hence need for bi-monthly scans for immediate future; your mum appears to be ahead of me on that. To be honest, I am currently reaching out to doc as, apart from headaches which are definitely reducing, I am worried about my right side, which is heavily numb all down it and it has got worse since I was told all was improving; go figure!! What are your mum's symptoms?

I am sorry that I cannot offer any real definitive solutions but certainly don't be afraid to challenge and question the doctors regarding your mum"s treatment.

Good luck to your mother; now and in the future,

Kind regards


Posts: 2
Joined: Oct 2017

My sister is 15 months post surgery plus tmz and radiation. She has tried trial with avastin plus mrz....It was awful. side effects of hallucinations, super lethargy and total non-recovery between 3/4 week infusions.  She got off it and now is looking to avastin alone, avastin plus lomastine(ccnu) or avastin plus cpt11.  Any input from anyone?  We need to decide next week. PLEASE HELP


Thankls, her sister Judi

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