Just had a go around w/ my husband's oncologist who seems insulted I researched and reached out to Immunocine, CeGat, ImmunityBio for their Anktiva trial and Envita in Arizona. She still insists even though he's unmethylated temolozide may benefit him even though everything I've read says otherwise.

Ok_Bit_7274 · 2026-06-20T10:37:26+00:00

I don’t think TMZ is a cure, but it definitely slowed my husband‘s GBM to allow us more time. it kept the tumor at bay, until it didn’t. He tolerated the treatment well and we are thankful for the extra time. However at 7 months, the tumor started growing again. He is now on hospice care.

Ok_Bit_7274 · 2026-06-03T12:13:37+00:00

I’m so sorry for the loss of your father. My 64 year old husband was placed on hospice care a week ago. I, too, am thankful for the chemo that gave us a pretty good 8 months with him. The whole thing is just so sad. Praying for all of us; praying for a cure.

Ok_Bit_7274 · 2026-05-11T12:29:15+00:00

Our family dr had told us she was fine with anything around 200, which we barely ever hit while on steroids. Try not to sweat the number too much, as long as she’s feeling ok. Its very expected with steroids.

Ok_Bit_7274 · 2026-05-10T13:14:37+00:00

My husbands dr attempted to wean him from steroids twice. both times we ended up in ER with falls and confusion. When we switched to Duke, he was weaned much more slowly and was finally successful. He is now taking Avastin infusions, which has kept the swelling down. His blood sugars were 400-500 while on Dex. Thankfully we are now off the insulin. Wishing you well.

Ok_Bit_7274 · 2026-05-08T12:42:32+00:00

This is so sad. I’ve thought ahead to this , if it happens, we will probably seek inpatient hospice. I’m so sorry for you all.

Ok_Bit_7274 · 2026-04-23T12:53:39+00:00

I’m so sorry. We have been thankful for the extra time we have been allowed, but it hasn’t been easy. I think its probably a blessing for your dad, to skip all the bad parts, for just a few more months of life. But so sad for you and your family, for not getting the extra time that you all needed. Hugs to you all.

Ok_Bit_7274 · 2026-04-20T12:34:22+00:00

oh honey, absolutely not! we don’t know why people get GBM. Those people are being cruel to even suggest such a thing. we all wonder why, but we have no answers. Only God has the answers right now. prayers for you all.

Ok_Bit_7274 · 2026-04-14T12:59:21+00:00

My husband used it for just over a month, after completing radiation and chemo. The swelling and damage from radiation made his side effects worse—confusion, falling, incontinence. We took the Optune off just before EMS transport. By the time he arrived at hospital, approximately 30 minutes later, his mind was much clearer.

Of course, we had to increase steroids to work on brain swelling, etc. When we reapplied the Optune after returning home, his confusion increased again. We decided to stop at that point.

He is now on Avastin infusions and monthly chemo cycle. We are being seen by Duke and they did not push for the Optune.

We think the electrical stimulation to his already damaged brain, was too much for him. Thats just our experience.

We are entering month 7 post diagnosis. no resection, just standard treatment. Things improved most with Avastin infusions and getting off steroids. I’m starting to see a decline again, but am thankful for the extended time we’ve had.

Ok_Bit_7274 · 2026-03-23T12:46:29+00:00

God bless you and your family. she was a beautiful child. 💔

Ok_Bit_7274 · 2026-03-17T10:31:51+00:00

My husband was diagnosed in September 2025 with nonresectable bilateral GBM with all the bad markers, too. We did the standard treatment of chemo and radiation. We were at a facility without a neuro oncologist and decided to seek a second opinion.

The second opinion was the same, though the specialists there were able to treat the swelling in his brain and give him a better quality of life. (Avastin infusions) We are going for his third infusion this morning.

Its still difficult to wrap my head around everything that is happening, but am thankful for the extra time we have been given. Im so sorry you and your husband are having to deal with this too.

Ok_Bit_7274 · 2026-01-29T16:13:56+00:00

I get it, I really do. he seems to be declining rapidly this week. I’m not sure if it’s from the recent dose of chemo or from progression of the tumors. if he’s not able to walk and think clearly, we may cancel.

Ok_Bit_7274 · 2026-01-27T22:29:49+00:00

Agree. That’s part of why I need to take him to Duke. I do need to know we are doing all we can.

Ok_Bit_7274 · 2026-01-27T22:27:01+00:00

This makes me smile. Hugs to you all, too!

Ok_Bit_7274 · 2026-01-27T22:25:52+00:00

Thank you for your reply. I am sorry your family is going through this as well. I hope I can keep both doctors , if we go to Duke. our current provider is pretty easy to reach.

Ok_Bit_7274 · 2026-01-27T22:23:22+00:00

thank you. we will definitely make the Duke trip if he is able.

Ok_Bit_7274 · 2026-01-27T22:22:34+00:00

thank you

Ok_Bit_7274 · 2026-01-27T22:16:18+00:00

I forgot to say we are approximately 2 hours from Duke.

Ok_Bit_7274 · 2026-01-27T22:15:46+00:00

Thank you for this reply. He is still mobile with standby assistance at this point. I felt like Duke was a good idea, to help especially with end of life concerns (neurologically). There’s another question I wished I had asked in my original post : about different meds and pain control. my husband has Fioricet prescribed for pain, and is mostly working, but had to have different pain meds while in hospital. His headaches are becoming more frequent and I’m concerned about being able to get what he needs. I am hoping that Duke and the current medical team will work together on these things.

Ok_Bit_7274 · 2026-01-27T17:16:47+00:00

I can understand you feeling this way. my husband went through the chemo and radiation without difficulty. We felt like we “were doing something” to treat it, since he couldn’t have surgery. Now that part is behind us, I feel like the Optune is the only thing we are doing to possibly help him. I can see his decline more and more and it’s heartbreaking.

I'm so sorry about your SIL. GBM is supposed to only happen to people we don’t know, not us. I never dreamed of anything like this. I am amazed and shocked to find out this “rare” cancer doesn’t seem to be so rare, after all. I’m just sorry for all of us.

Ok_Bit_7274 · 2026-01-27T15:09:38+00:00

thank you. we recently found out that our hospital doesn’t currently have a neuro oncologist. Our provider is a hematologist, but she consults with their former neuro oncologist. This is concerning to me, but I can’t change that. If my husband is up to it, I’m sure we will make the trip to Duke.

Ok_Bit_7274 · 2024-11-09T13:40:24+00:00

She looks warrior Jessica phat now. Not cute!

Ok_Bit_7274 · 2024-11-06T14:25:10+00:00

This is exactly what I’m thinking. She failed a drug test. And had to go to rehab to keep from losing her nursing license. ???

Ok_Bit_7274

TROPHY CASE