One patient with glioblastoma still alive nine years later
by cpnmorgan on Fri Nov 16, 2012 02:19 PM
Yes, 39 months! My husband has been a fighter all along and we have been very lucky. However, in June of this year the original area where the tumor was removed was returning. So it was off to Duke U again for a clinical trial and/or surgery, neither of which happened. So he was put back on Avastin and Temodar, which he had not taken for nearly a year. In September's MRI a spot was found and our neurologist thought it was a sign of a stroke so my husband was instructed to go off the Avastin(which can cause stroke activity/blood clots) and continue with Temodar. Recurring tumor that was seen in June had receded and swelling had gone down. Good news but....
Latest MRI now shows the stroke spot to actually be new tumor growth on the right side of his brain and bigger since September's MRI. Original tumor was on his left side of his brain. More or less this scares the shit out of us. Obviously the Temodar is not working. Cyber knife(gamma) is our next step and to go back on the Avastin, continue with Temodar and CCNU was suggested as well.
Seems like the roller coaster just swerved abruptly and I feel sick to my stomach. This journey is emotionally exhausting as many of you traveling through this cancer can relate.
If anyone has experience with the cyber knife I would like to hear.
by jennette on Fri Nov 16, 2012 02:42 PM
So sorry things not working for you. I hope you dont mind me suggesting you look at the research on salvestrols, and see whether you think it might be an option. I have breast cancer and have been taking them - and I have been to see the two professors who developed them in Leicester University in England giving talks, and was able to ask questions.
I dont think you would loose anything - my cancers are shrinking.
I really hope you dont mind me suggesting this and do hope your husband might like to review the work.
Gerry Potter also mentioned chloroquine, which I have got from my doctor. This seems to work very well with any chemo. The research is on the internet.
by Bulley1 on Mon Nov 19, 2012 05:31 AM
I can see why this scares the shit out of you. I don't have personal experience with gamma knife for malignant tumors but.......gamma knife works best in "small, well-defined tumors, in rare cases it may be useful for treating small recurrent gliomas" according to published literature.
You might post: Gamma Knife in the subject area to get a good response. I know GBM patients have this type of radiation regularily.
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