One patient with glioblastoma still alive nine years later
by Cook1021 on Thu Jan 03, 2013 12:31 AM
by siblingof on Thu Jan 03, 2013 02:11 AM
by Cook1021 on Thu Jan 03, 2013 02:51 AM
by Cook1021 on Thu Jan 03, 2013 03:01 AM
by SarahGrey on Thu Jan 03, 2013 03:07 AM
I'm guessing your friend is also taking steroids? Is he taking Pantoprazole? It's pretty much necessary that he take that drug to protect the stomach from steroid damage. Good luck!
by SarahGrey on Thu Jan 03, 2013 03:09 AM
PS - did he tell his doc about the pain? You mentioned he just started the "double-dose" of 5 days on, 20 (or 23?) off. This is a test-run to see how he handles a stronger dose. If he can not tolerate the stronger dose, his doc needs to know asap. :(
by Cook1021 on Sat Jan 05, 2013 03:02 AM
by Cook1021 on Sat Jan 05, 2013 03:03 AM
by SarahGrey on Sat Jan 05, 2013 04:34 PM
yes, he definitely needs something to protect his stomach from the steroids :(
Also, we didnt know about the 'trial run' either. it was only after the doc increased the dose that he told my husband 'ok, now that you handled a stronger dose, we'll increase it one more to full strength.' wow.
basically, with Temodar, it seems the 42 days are at a low dose. Then, when you start 5 on, 23 off, the dose is increased. If you handle it well then the next time (and future rounds) it's increased to the full strength.
by GeeBeeEm on Sat Jan 05, 2013 06:37 PM
Well - a grade 6 glioblastoma is pretty serious (sorry - I'm a pedant. A glioblastoma is technically a grade 4 astrocytoma).
I think the others have nailed it- it's either the temozolomide or the steroids.
I'm more than 4 months past the end of my 'high dose' Temodar adjuvant therapy (so a good year past where your friend is with the same disease), and my stomach still hasn't returned to 100% normal, although it's certainly better than when I was on the drugs. Have him eat lots of fruit, veggies and a high-fiber diet, and stay hydrated.
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