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GBM-IV chemo experiences

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Old 03-21-2011, 08:17 AM   #1
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Location: Atlanta, GA, USA
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john30332 HB User
GBM-IV chemo experiences

hello, i am 35 and i have had GBM-IV for at least a year. i had a resection surgery, seven weeks of radiation, and almost 1 year of Temodar and Avastin. last october i had a reoccurance. my avastin was increased and within two months the new tumor was gone. about a month ago i had another reoccurance, showing two new small tumors.

my new chemo regime is avastin twice a month, irinotecan twice a month, and carboplatin once a month. anyone have any experiences with irinotecan or carboplatin? so far they have really beat me up like the avastin and temodar never did.

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Old 05-02-2011, 11:51 AM   #2
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john30332 HB User
Re: GBM-IV chemo experiences

well, here we are a month or two into it, so i will answer my own question -
irinotecan is rough. the side effects are managable, but we are still trying to put our finger on just the right meds to catch everything (which may nor may not be possible). usually i only miss one day of work the day after my chemo. occassionaly i am able to make it in the next day. it takes at least a week to get to feeling as close to 'normal' as one can expect after treatment. however, the effects are compounding on me; i have very little energy.
the good news is the treatments appear to be working on the cancer. i have shown improvements in my latest MRI's; but have also had dozens of people praying for me as well. my oncologist said 'whatever you are doing just keep doing it. it is working'.
my next MRI is in a month's time, and i am hoping that if it shows continued improvement we can scale back on the chemo.

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