High grade glioma: waiting for remainder of molecular testing

I meant to write nephrologist. Yes, I'm originally from South Africa, but I lived in the US a long time.

Thanks so much!

oh it did throw me but i didn't want to contradict you. Well good luck and definitely seek out resources that the clinic has, you may have to advocate for yourself, as now a days, the professional's caseloads are high and spread thin, but it is a service ( ie social work, pharmacy, dietician) that I am sure Mayo has a collaborative team approach. That has been my major source of support here at Baptist Hospital in Kentucky. I think anyone who sees a specialist for such a serious disease should avail themselves of those services, because its not just about the biology /anatomy of the tumor, but your body and mind in other areas. I find with electronic medical records, my team is so responsive, i rarely wait more than a day for their responses. most time within hours i hear from them. Good Luck, make to ask questions about their team , what they have to offer, think of it like 'purchasing' a service, you are the customer and entitled to know what they can do for you.

Getting out of the house is very important. Next is finding a friend to talk to. Takes your time to help fade out the problems just enough to enjoy some of your days or hours, or minutes.

I just got out of the house two days in a row. It was for a haircut and color. I showed her a picture of me, which showed blonde. I left with dark copper, and interestingly I had a talk with her about not wanting to get red. So, then today I went back to the salon, she had been fired and the owner hadn't even seen my hair, so I have to go back tomorrow. I walked for the first time because I walked to different errands. Yay me!

My husband just found out he has High grade Glioma grade 4 on 8/12, and had surgery on 8/14. Now we are waiting for treatment to start. We have met with UCSF neuro oncologist , and he suggested we can proceed with standard treatment (radiation + chemo) plus keto diet trial. Did anyone has this treatment experience before? What's the result?

Welcome to the group, wishing you all my best wishes for recovery, keep
us posted please 🙏

After much reading, research, and listening to our treatment team, I 've learned that Glioblastoma symptoms and survival time is unpredictable. Depends on health and age, location of tumor, DNA analysis, response to treatment....and more. My husband was diagnosed in April 2024, had surgery and the standard radiation and a year of chemo. He also was using an Optune device for a year (not for everyone, but worth a look). He has not been on a keto diet, although we have focused on a healthy vegetarian diet (has been vegetarian for over 40 years) with plenty of protein to keep muscle strength. His tumor re-occurred in July 2025. Still some treatment options. Be realistic but keep up your spirits. Wishing you the best.

Thanks very much for your reply and encouragement!

Best wishes to your husband!

It looks as though your husband is in the same issue I went through which started in October of 2023. After the radiation and chemo, I was advised of the next steps. The negativity of the Oncologist I was seeing immediately made me get a 2nd opinion. I am so glad I did.
The next treatment was 5 days a month for 6 months of taking the same chemo pills but with the highest dose I could. I was done in July of 2024. The only medication I take now is seizure pills as that is what happened when this was discovered.
Early 2025, my oncologist said there was growth again. She had a wait and see attitude, thank God! My last MRI in early August of this year, the oncologist said just as she suspected, the growth shrunk.
As a side note, due to my original diagnosis which gave me a condition for that of a 5 year old, my oncologist had my blood work sent to the lab again. The 2nd opinion came back with a diagnosis that was different than the first one which I looked up and it pretty much has this as the answer 🤷‍♀️ why I had this happen is unknown.
Sending prayers and hugs that your husband has good results like I have experienced.
Sjt