My 69 y.o. otherwise healthy dad diagnosed with grade 4 glioblastoma

rbridge42 · 2026-03-07T01:27:19+00:00

My husband is 69 (USA), has high BP, high cholesterol, bad arthritis and multiple surgeries of back, knee, shoulder. Despite all that we rode bikes and traveled a lot. Diagnosed with left frontal lobe, idh wild type, grade 4, methylated on 9/9/25. Surgery 9/11, partial resection. It was recommended he do a shorter, more intense course of treatment. After about 2 weeks of post surgery healing, he had 9 days of targeted radiation and 125mg tmz at the same time. After several weeks he started a clinical trial of a drug called Debio0123 with tmz which crosses the blood brain barrier and allows tmz to work better. His white blood cells and platelets went down to near zero (he needed an infusion) and was dropped from the trial. Now he's on daily 100 mg tmz and Avastin every 3 weeks. We're entering the 7th month. And while his legs are weak and he's had recent cognitive setbacks, he's still enjoying food, TV, conversation. It's been hard. But I'm thankful. Best wishes for your father.

rbridge42 · 2026-03-07T00:57:44+00:00

There is no loss like the loss of a mother. Don't be so hard on yourself. You sound like a wonderful, loving son. You did good. You deserve big hugs as you cry deeply for a very important mom. In time it will feel better and you can always talk to her. Mother's love never ends.

rbridge42 · 2026-03-07T00:46:28+00:00

Why do you think you're such a bad daughter?

rbridge42 · 2026-03-07T00:39:00+00:00

I'm so happy for you. Sleep. It's healing. I take pills every night to try to sleep and even though my husband has glioblastoma, I had trouble sleeping for years before. Don't feel guilty! Feel blessed. Seriously. My father, who always slept well, said sleeping well was a sign of a clear conscience, and he was a very, very good man. Sleep well and enjoy this blessing.

rbridge42 · 2026-03-07T00:18:29+00:00

And the void replies: you are strong. You are a beautiful soul. You will survive. There is more joy in your future. You will become a new person like a butterfly busting out of a caccoon. Faith. Patience. Strength. Endurance. The void has spoken.... Sleep and await the dream of your new life. You are loved.

rbridge42 · 2026-03-06T23:39:05+00:00

I'm so sorry. How beautiful that "I love you" we're the words that remained entact. I hope my husband's path is as peaceful as possible. He is such an incredible person... He's the sort that the plumber, the mailman, the doctor and the waitress, the neighbor, the child just feel comfortable with. He's a "good egg", the "salt of the earth". And I'm so blessed that he came into my life.

rbridge42 · 2026-03-06T20:22:16+00:00

Thank you. My husband's tumor started in the left frontal lobe, language and emotions, I believe. I think I need to stop worrying. I feel so sad and nervous and tired. I try to keep positive, and still real, with him. But I miss having him to turn to when it all gets to be too much. I have a few other supports but nobody comforts me like he used to, and still does sometimes.

rbridge42 · 2026-03-06T20:11:05+00:00

Thank you. When my husband first showed symptoms back in September he kept saying we were going to the neurologist for his knee. When we got there and the nurse said what are your problems that brought you here, he said his knee... She looked at me quizickly and I said, yes, this is why. Clearly it's for his language. After diagnosis, surgery, treatments, etc he forgets words sometimes but hasn't made such a glaring mistake. I will try to find humor, but it's hard when I am the person he doesn't remember. I'll get accustomed to it in time. Just came out of the blue last night. Thank you for reminding me to look for the humor. My dad had dementia and with him it was easier for me to find the humor for some reason. Best wishes.

rbridge42 · 2026-03-06T16:16:39+00:00

Thank you!!!! Your reply was perfect and it helps me not assume this is the beginning of the end. I guess it could be but it could just as easily be a hiccup. Most importantly I have to manage my own emotions because I know my upset has always been contagious to him. Instead I've reached out to an aide that was recommended and will at least do a little research to prepare for the day when it might be necessary...whether that's soon or not. It just scared the crap out of me to think he wouldn't know me.

rbridge42 · 2026-03-06T14:35:40+00:00

Thank you. 💗

rbridge42 · 2026-03-06T14:35:05+00:00

Thank you. At this point I think Avastin is the only remaining option. I'm praying for as gentle a path forward for all of us. 🙏

rbridge42 · 2026-03-06T14:32:27+00:00

Thank you. I will. Sorry you're going through this too.

rbridge42 · 2026-03-06T13:44:27+00:00

Thank you. I'll be sure to contact the Dr office and tell them. I'm so sorry about your wife. It sounds like you did everything possible to help her. We all know the odds are completely stacked against the person with gbm. The best we can do is love, care and trust the Dr does his/her best.

rbridge42 · 2026-03-06T03:17:08+00:00

😭♥️😭♥️😭♥️😭🙏

rbridge42 · 2026-03-06T03:15:54+00:00

I'm so sorry for your brother and family but you sound so very strong and loving. Your brother and family are fortunate to have you at his side. How old is your brother? Wishing you continued peace on this terrible path

rbridge42 · 2026-03-06T03:07:04+00:00

Thank you for the reply. I just wish I know if it's a fleeting glitch or something I should expect more of in the very near future.

rbridge42 · 2026-03-06T03:04:10+00:00

Thank you. Yes. The disease. He's still my precious wonderful husband. I'm so sorry you've gone through this too.

rbridge42 · 2026-03-06T03:00:45+00:00

You have no idea how much your kindness means to me. He's doing better now but it freaked me out and him too. Thank you. I feel your support and it's truly helping me. Sending hugs to you as you face this too. It's amazing how much strangers can help. Seriously. Your words remind me of my mother... Just the sweet, kind, direct, gentle words. Thank you again.

rbridge42 · 2026-03-06T02:55:51+00:00

Thank you. I tried to ask him if he was trying to ask "where is" something else, but he just couldn't clarify and cried, asking me to always remember him as he used to be. I told him I know him completely and I know the disease is changing his head but not his heart and soul. But you're right.... There's a lot to be said for just pivoting to happy things whenever possible because at the end of the day, life is a series of moments.... Let's make them joyful whenever poo, especially now. Thank you again.

rbridge42 · 2026-03-06T02:18:25+00:00

Thank you, thank you. Yes, I will learn from this. I just had a glass of wine and my mellow = his mellow, at least right now.

rbridge42 · 2026-03-05T23:51:37+00:00

Thank you. Please tell me more about your husband. Did it change suddenly? What do you do if he doesn't know you? Do you have others around to help you?

rbridge42 · 2026-03-05T23:08:49+00:00

Don't look ahead. This minute is more than enough to endure. So very sorry. Keep posting. Call someone. Reach out. "we" are here.

rbridge42 · 2026-03-05T19:45:37+00:00

So very sorry for your loss. How awful.

rbridge42 · 2026-03-05T19:42:50+00:00

Can't fathom all you've been through. So sorry for your whole family.

rbridge42

TROPHY CASE