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Radiation with or without Temodar for Glioblastoma?
Brain Tumor | Last Active: Jun 1, 2020 | Replies (10)Comment receiving replies
My situation was a little different... inoperable left parietal AA3 diagnosed in August 2019. Thirty treatments of proton beam radiation along with 42 does of Temodar. I was told the radiation and chemo was more effective together. After one month, I went on the standard of care of 5 nights of Temodar at a larger dose per month. I am actually beginning the 6 month tomorrow. I have been downgraded from AA3 to molecular GBM. Been suffering from large amounts of swelling and a lot of problems with language, which was the initial symptom one year ago. On top of this, I came down with bilateral pulmonary embolism and dvt, so I'm on lovenox injections for three months. Add on the dexamethasone and I'm a walking blue and black bruise.
Not this helps your question, but always keep asking questions until you are satisfied. Best of luck!
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Hi @eileen61, thank you for your insight. I'm sorry to hear you're going through a bit of a rough patch with all the swelling, language problems, and the DVT/embolisms on top of all that. The dexamethasone is quite a heavy drug, but I wish you the best today & always. As someone once told me, "this too shall pass." And every since April 7 (when I first heard the new of my dad's tumor), that has been my daily motto. It seems like there are good days & bad days, and every day brings with it new challenges & new joys so I've been taking it a day at a time.
I'm curious to know why you & your providers chose to pursue proton beam radiation vs. general X-ray radiation? Also, did your provider discuss your molecular analysis of the GBM (i.e. IDH wild-type vs. mutated, MGMT methylation, etc.) when deciding on using Temodar? According to my dad's neuro-oncologist, given that he is NOT MGMT methylated and the COVID19 risk/crisis, he does not think giving Temodar during radiation is a good idea since the possibility of harm (i.e. COVID infection) >>> outweighs the benefit.