re: Anyone have experience w Glioblastoma? Personal or professional?

My uncle on my dads side and my grandfather on my moms side both passed from this.
Currently my aunt on my moms side has it. The doctor removed 100 percent of the tumor from my aunt but even this is only giving her a little more time.

My best friend finally succumbed to Glioblastoma this past November after 5 years of a hard fight. One never knows how the symptoms will manifest themselves from week to week. There were times of fatigue, times of confusion, times of physical pain, seizures, weakness, and countless other symptoms.

The treatment involved chemo and radiation. Radiation is what eventually did him in. It is a terrible disease and I wish your loved one the best.

If I can offer one piece of advice: there will times where you want that person to attend things before their terminal diagnosis finally gets them, BUT, understand that they cannot do all of things they once did. they may look normal, but they really do not feel normal. Understand that they are not shunning you. Understand their struggle, and spend as much time as you can enriching their life. You will get it back in spades.

Sending up a prayer for you and your family.
At her age, hospice is the best hope for her to not endure more pain. My active mother in law was diagnosed at around the same age and had the best treatment available at Mayo Clinic - despite being given hope, I think she went through hellish treatment for nothing.
The neurosurgeon described glio as “melting” into the brain in such a way that it is impossible to know when you have removed all of it.

From another board where I post, so it may read funny on dates/times.


My wife was diagnosed with a glioblastoma in September of 2017. She went through the standard treatment including surgery, radiation and chemo. Initially, she did well, and even worked part time until December of 2018. In August of 2018, both oncologists determined that continued treatment could not guarantee any additional days on the back end, but would guarantee decreased quality of life on the front end.
Things didn't get really bad until last December of 2018. It got to the point where her entire world consisted of her bed and a power recliner I bought for the den. The last two weeks were spent entirely in a hospital bed.

Our hospice service was really great. I found a private sitter for the last 3 weeks who is an absolute angel. She cared for her as if they were mother/daughter. I can't say enough about how wonderful she has been.

In the last week, she slept over 23 hours a day. She could only say yes, no and ok. I listened to her breathing all night and would sleep about 3 hours or so. I heard her last breath at 2:05 Saturday morning.

Good friend from another board has it, and wrote quite extensively about it over there. He is somewhat private, but posted it for us. I was going to post the link, but thought better of it. IF you are interested, let me know, and I'll send the link to you.

His first-hand account is quite TL;DR, but sad AND funny at the same time. He is a talented writer He has a great attitude about it and is so far after much treatment, doing pretty well.

Please don't take this the wrong way, as I know things don't always translate well over the internet.

I am relieved for everyone involved that this particular diagnosis is for an 80 yo

Has to be absolute best case scenario.

May you find peace and have only fond memories.

My brother had a medulloblastoma. Because it sits on the stem, he suffered major brain damage during the surgery. Suffered a stroke during recovery.

He spent the remaining 19 years in a wheelchair and had a very low quality of life at times...but science granted him 19 more years. It's not the life he wanted, but he lived.

My advice. Don't mess around with the current neurosurgeon because your loved one likes him/her. Go to MD Anderson. Google it. They are the best.

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We’re meeting with hospice shortly. The neurologist said the size and and location of the tumor make it difficult to treat effectively. My Mom is 80 and she chose not to endure any harsh treatments that might possibly cause more harm than good.

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I hope the meeting goes to your liking. It is a wonderful and underutilized service.

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Call your parents and tell them you love them and say a payer for my Mom.

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Of course to both. It's very difficult to say what it is you'll do when it's your own family member, but my wife's grandmother got a fairly rare, rapidly-terminal inoperable cancer a few years ago- something like 90d from onset of symptoms to death. The entire family still talks about how great the last weeks were. Enjoy the little time that's left to say all the things you forgot to tell her over the last (I don't know, 45? 50?) Years. Write it down in a letter (or two) for her, especially if she's having memory problems. Writing just has a different effect in general, but especially in folks who have difficulty remembering, it seems to just make a bigger impact.


I'll be thinking of you and your mother.

Well-written post, thanks for sharing, and I’m truly sorry for your loss.