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My Husband's journey with Glioblastoma

Brain Tumor | Last Active: Oct 21 5:20pm | Replies (174)

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@collinv

No problem, you're welcome @otis123 @amandajro . And I can certainly agree with the point about Optune. In fact, my dad just recently started Optune due to delays with insurance negotiation.

And yeah, I can share a bit more. My dad was completely asymptomatic until he had a seizure around 1 am one night 5 months ago. Fortunately, we noticed pretty quickly and were able to get him into emergency care soon after. He then went through the standard surgery, TMZ, and radiation treatments and is now on the monthly TMZ cycles. We haven't gotten him into any clinical trials yet as we weren't quick enough the catch the window for newly diagnosed and have yet to qualify for recurrent. Fortunately, he's MGMT methylated so the TMZ may be working, at least for now. We also recently started him on Optune and have slowly built up to the regimen of supplements I mentioned in the last post (but constantly looking for more to add).

Before surgery I worried my dad may never be the same mentally, but he made a full recovery. Then after the diagnosis I thought his chances were hopeless, but the more I research the more hopeful I am. It seems there are so many experimental treatments with promise, and I really now believe with the right findings and risks long term survival may be a real possibility. Of course I don't know, but if it's out there I will find it!

I mentioned supplements in the last post, but there are good clinical trials showing survival benefit in GBM too. Most if not all of these are probably not in area/inaccessable to any one person, but probably at least worth mentioning just in case. DCVax-L, SurvaxM, Dendretic Cell Vaccine Targeting CMV, Wilms Tumor 1 Vaccine, CUSP9 protocol, COC protocol, Mebendazole, Anlotinib (FGFR inhibitor), Paxalisib (PI3K inhibitor), namely. Keytruda, as you guys were looking at seems promising as well for patients pre-surgery (or assumedly without surgery) as it seems to need the tumor present at the time of treatment to have an effect.

I don't mean to overwhelm with information but there seems to be reason to hope and believe that action can make a difference. Again, I wish you all the best.

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Replies to "No problem, you're welcome @otis123 @amandajro . And I can certainly agree with the point about..."

I appreciate all of the information and thank you for sharing it. We head to Syracuse this morning for his first re-radiation treatment. He will have 10 total. We are still waiting for the Keytruda to get here. I will look into all of the treatments you mentioned. Steve's tumor is not methylated, which makes it a little more difficult to treat, unfortunately. Glad to hear your Dad made a full mental recovery. GBM is certainly scary stuff!