My Husband's diagnosis of glioblastoma grade 4

I just read an article about a GBM vaccine created by a doctor named John Yu at Cedar’s Sinai. It has kept a few people alive for a number of years. Google it and see what you think. Not sure if it would be available where you are at. I was not aware of it two years ago when my husband died. We might have tried it because the chemo and radiation did nothing for him.

Thank you, will check into it.
So sorry for the loss of your husband. I just can't imagine how hard it is and pray won't have to for many yrs down the road! 🙏

Temodar taken on a very strict schedule one hour before radiation if you are a Mayo patient. You should have received explicit instructions on this protocol and related medications ( anti nausea and antibiotic).

My 86 year old husband tried Optune. The device agitated him so much (the arrays and the cords) that we gave up on using it. Sigh.

The goods news is that his tumor responded well to the initial combination treatment of radiation and chemotherapy.

Good luck!

My husband started temodar(temozolomide) Jan 10th 2024. He takes it before bed. The anti nausea med schedule that has worked for him is One hour before the temodar dose he takes a zofran and again another zofran when he wakes up in the morning. This regimen has kept the nausea at bay. He also takes one dose of Mirilax per day. His side effects have been minimal. My husband also is doing radiation as well. He just finished week three of radiation. Hope this helps. He will also be wearing the Optune when he completes all his chemotherapy.

@angls64, just checking in. How did treatment go last week?

The treatment is going pretty well. He hasn't had too many side effects. Has lost his hair just in the incision area. Hasn't had any nausea but has had some dizziness and takes a couple hr naps a day. His last day on Temodar and radiation will be March 4th. Then have a month off of pill and then higher dosage 5 days in a row per month for 6 months. In between might have clinical trials if they don't interfere because of the cmml leukemia.
Thank you, Colleen, for checking on him.

My husband just finished cycle 3 of Temodar yesterday. He has experienced no nausea at all. He finished radiation/chemo combination in late November. He also has a bit of hair loss, only where the radiation entered. He’s doing OK, all things considered. He is suffering from some noticeable cognitive decline, but he is 86. The doctor says this treatment can unmask dementia.

My husband also has glioblastoma. He took his Temodar at night, a half hour after the anti-nausea medicine. Works really well, he would just sleep through the night.

Thanks…I can ask the onco about it if it starts to regrow..

My husband took it before bed and got along pretty good. Drink water to flush it out. He also tried optune therapy. He lasted around six weeks but he thought it was ruining his good days and stopped.