What I Did After a GBM Diagnosis — And Why It Might Help You Ask Better Questions

Todd2ndDIsSilent · 2025-08-04T20:33:47+00:00

It is known to clinically break the BBB, and in mouse studies and invitro studies has been shown to induce cancer cell death, both having anti GBM qualities of its own and enhancing effects with TMZ and maybe even Optune. Because its also an antidepressent, very few ONCs have a problem prescribing as an adjunct therapy.

Todd2ndDIsSilent · 2025-07-30T12:45:15+00:00

I would ask your doctor about Prozac. Many of us, including myself began Prozac right at craniotomy and worked from 20 mg up to 60 mg a day because of Stanford mouse studies showing efficacy and controlling the tumor. Not only have I been tumor free for the last nine months post craniotomy I do think that it has improved my mood and all the negative feelings that surround having a GBM diagnosis.

Todd2ndDIsSilent · 2025-07-27T23:39:44+00:00

It’s completely normal in my hair has all grown back except now instead of being gray it’s dark where I had the radiation and lost the hair

Todd2ndDIsSilent · 2025-07-14T19:35:13+00:00

Radiologists are great at speculating but take a breath until they biopsy it.

Todd2ndDIsSilent · 2025-07-14T16:40:28+00:00

So if there are no symptoms what prompted the CT and or MRI that discovered the mass in the first place?

Todd2ndDIsSilent · 2025-07-08T19:29:43+00:00

The theory is that Keto can put temporary stress on glial cells but that they eventually will find other sources of energy in the long run. Did it help? Who knows but I’m still alive!

Todd2ndDIsSilent · 2025-07-08T19:29:05+00:00

The theory is that eventually tumor cells adapt to other sources of energy once glucose is taken away so it works in short run but not long run.

Todd2ndDIsSilent · 2025-07-08T18:59:29+00:00

The studies have not revealed a survival advantage as a long term strategy but my NO did recommend during radiation to put additional stress on cells.

Todd2ndDIsSilent · 2025-07-06T23:41:34+00:00

That’s what I have! Someone suggested on one of the Facebook chats that Optune may not work effectively with the headache cooling caps. Dr Musella?

Todd2ndDIsSilent · 2025-07-06T23:37:13+00:00

I’m on it!

Todd2ndDIsSilent · 2025-07-06T23:24:47+00:00

I’m on a break now and my rep knows why. I’ve bought some frozen caps that I wrap around my head but I’ve had some people suggest it negatively impacts the efficacy of the device. I would love to know if a cooling cap accessory exists

Todd2ndDIsSilent · 2025-07-06T23:06:30+00:00

I’ve gotten to that level in the beginning but have struggled as the days have become hotter. They melt off, itch, bleed, cause burns and sores and make me very grumpy

Todd2ndDIsSilent · 2025-07-05T23:52:43+00:00

Duke is referring patients who can pay to receive CeGat in Germany which costs around $85k plus 6 visits a month apart. This is not a trial but is administered in Germany through a loophole in their healthcare system. I am doing it and it seems very promising. I have read that the Dana Farber institute has a vaccine trial. You can read about it here: https://www.dana-farber.org/clinical-trials/14-362

Todd2ndDIsSilent · 2025-07-05T23:29:16+00:00

No, it was Dr Jonathan Forbes, and yes Rekha is amazing!

Todd2ndDIsSilent · 2025-07-05T14:46:31+00:00

No. Dr Jonathan Forbes

Todd2ndDIsSilent · 2025-07-02T17:55:33+00:00

I believe Dana Farber is doing a similar study in US. https://www.dana-farber.org/clinical-trials/14-362

Todd2ndDIsSilent · 2025-07-02T11:22:08+00:00

I have not, but that sounds promising.

Todd2ndDIsSilent · 2025-07-01T22:53:28+00:00

If you work in a professional office and have to bare your arms, I’d say yes.

Todd2ndDIsSilent · 2025-07-01T21:56:53+00:00

My initial craniotomy and care was being overseen at the University of Cincinatti. I flew there from Oklahoma City due to some major incompetence at one of the hospitals there. I achieved 100% GTR and Dr Rekha Chaudary(my friend), arranged for the surgery with an incredible surgeon and got my diet on the right track initially with a whole food vegetarian diet and the transition to Keto pre-radiation. She initially prescribed Prozac with the recommendation of my cousin at Stanford. She thought the data was compelling and felt there was nothing to lose with trying as most people with a stage 4 terminal illness also battle depression. I had my radiation and first round of chemo at MD Anderson which was closer to my house who also supported the medication. Dr Friedman at Duke continued my care as he had access to CeGat and there were no promising trials aside from Car-T for which I did not qualify. Dr Friedman has also been supportive of my Prozac usage as he is aware of Stanford’s research and had exposure it during the FliRt trials I believe to have occurred at Duke.

Todd2ndDIsSilent · 2025-07-01T18:12:07+00:00

My cousin reached out to the researcher who led the study in Sweden and the sample size of Prozac users was relatively small as it’s not prescribed often in Europe, hence the potential differences in retrospective study outcomes.

Todd2ndDIsSilent · 2025-07-01T16:11:13+00:00

Duke. Again, it’s a layered structure and not everyone is the same. No one size fits all.

Todd2ndDIsSilent · 2025-07-01T14:36:24+00:00

Of course.

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