Feedback on Cocktail & Post-TMZ

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Title : Feedback on Cocktail & Post-TMZ
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Feedback on Cocktail & Post-TMZ

Dear Stephen, Dear All,

I’m so sad that so many of us are finding ourselves here. You have my immense gratitude, Stephen, for the invaluable knowledge that you share with us all and for this incredible website.

I was diagnosed with GBM in July 1018. I’m a single parent of a six-year-old child. This nightmare has been devastating.

My tumor was very large, in my right parietal cortex, 100% resected. It was 94% MGMT methylated. It had TP53 mutations in three variants, no IDH1 mutation, CBL mutations in two variants, CDKN2A/CDKN2B homozygous deletions, Stag2 mutation, PDGFRA mutations in two variants (one with 85% frequency), and very high amplification of PDGFRA (~25,000 reads (>50x)) .

I’m now completing my 12th TMZ maintenance cycle. I have not yet had a recurrence and know it’s a race against the clock. The tumor sample was unfortunately set in paraffin, so I’m not a candidate for DCVax-L. I’ve been trying to raise funds for the CeGaT peptide, but coming up with all that money is a longshot for me.

1] Does anyone know if there are any other vaccines/immunotherapies for which I might qualify?

2] I’m wondering if anyone could provide a recommendation of what treatment to pursue after a year of TMZ. I battled with my neuro-onc to use CCNU on day 1 of my TMZ maintenance cycles, but she would not relent. In fact, she has refused every request I’ve made of adding agents in addition to TMZ, such as Keytruda, to prolong my survival. Is my only option at this point in terms of ‘standard of care’ metronomic low-dose TMZ?

3] Is there such a treatment as metronomic low-dose CCNU? If not, might I push to now receive CCNU in a conventional manner, assuming my blood counts are okay?

4] If I proceed with metronomic low-dose TMZ, should I avoid low-dose metronomic Accutane?

5] I had to stop high-dose Tamoxifen owing to concerning side effects. Would it have any value (such as for protein kinase inhibition) at a much lower dosage? Is there another effective anti-angiogenesis medication to use instead?

Following is my current daily combination of off-label medications. I would so greatly appreciate any feedback on the dosages (are my current ones at therapeutic levels?) and what agents I might consider adding. Thank you so very much!

Celebrex 400 mg
Metformin 1500 mg
DCA 1000 mg (on/off owing to significant neuropathy)
Lansoprazole 30 mg (120 mg 3 days before TMZ, during, 2 days after)
Chloroquine 250 mg
Naltrexone 4.5 mg
Minocycline 200 mg
Melatonin 20 mg

With gratitude and praying for us all!
~Joule



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