Glioblastoma stage 4 -my story so far

Im a 14 month survivor and happy new me. Mine was 1 step down from yours and huge. Lost about 10 months of memories. Numerous seizures then went 11 months and had a string of them. Back to learn and survive. Had radiation twice and it kemo a few sessions, now cancer free and making a comeback. Hope you have a wonderful day today and enjoy the weekend. I plan reaching 85. Im 68 now.

Randall, was your chemo Temozolomide? Thanks

Nope I had katruda. Only was able to do two sessions before seizures took me over. They had me on too many anti-seizure meds. So between that and radiation. They got rid of my cancer. Recently had 10 seizures in 4 days. Frontal but is gonna cost me a year b4 I can drive. Im happy I still have most of my abilities back. Sorry for the book.

I'm also not getting chemo until after radiation treatment. From what I read in the patient portal, my particular molecular glioblastoma profile is the reason I'm not on chemo (TMZ) like I was told I would be at my home hospitals.

Are you doing Optune now. I'm wondering if they'll do Optune after the photon therapy.

My radiation oncologist prescribed Namenda, and I can't find it. Ugh.

Not on Optune yet. Maybe after my radiation. Not sure if I continue chemo either. Still have a month to go.

Hello all,

I'm done to last month of 5-day chemo after the initial surgery/radiation/chemo process. I was supposed to be using the Optune as well but did not find this 18 hours a day everyday process inviting. Instead, I choose the gamma knife radiation procedure more acceptable as this is a 1-day process. I still have a few issues with hearing on left side but I'm doing ok. I hope this helps you.

I'm going to check that gamma knife procedure with my doctor this week. Thanks!

You can reach 85 years or more!! 🙏 need lots PPF (PATIENCE PRESEVERANCE and FAITH).. You may want to read the book of a stage IV glioblastoma patient, who survived more than 20 years : "They call me a miracle" by Randy R. Harris with Carmen Rice", available in Amazon
Also ask your Dr. about megadosis of intravenous vitamine C. It helped my sister along with chemo. She had no nausea nor sickness and 5 years after. No new growth!!
BEST WISHES & BLESSINGS 🙏 💕

My wife has a stage 4 glioblastoma and really the only positive on genetic testing was that hers is GMGT methylated. That made her a good candidate for Temezolamide. She recently finished a six week course of the temezolamide along with 30 radiation treatments. She has been hospitalized twice; once for brain swelling that required some high dose steroids and she developed a blood clot in her lung just as she finished treatment. She is unable to walk unassisted and cannot speak more than a few words. Her symptoms don’t seem much better. Fortunately she has no pain. In three weeks she starts back on a higher dose of the chemotherapy medication for 5 days every 4 weeks. That will go for six months. Trying to stay optimistic but not seeing much improvement so far is discouraging.

My husband was diagnosed in April. Sending prayers and positive thoughts to you and your wife.