Inoperable, stage 4, glioblastoma, wild type, entering brain stem. Anyone survived longer than 6 months with this diagnosis?

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Inoperable, stage 4, glioblastoma, wild type, entering brain stem. Anyone survived longer than 6 months with this diagnosis?

by Palmerclan3 on Mon Dec 31, 2018 05:44 PM

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Hi everyone, our father 62 was just recently diagnosed with an inoperable glioblastoma, stage 4 wild type, located near and entering into the brain stem. He starts the standard of care treatment TMZ and radiation this week. We have researched anf researched to find anything to help extend and help keep his quality of life strong as long as we can. We have looked into clinical trials such as the oncolitic virus therapy, tch and cbd, COC supplements, cocktails, essentail oils, keto diet....but we don't know what works and what doesn't or if we just try everything and cross our fingers. If anyone has had a similar diagnosis or a family member how long did they survive? And if it was longer than 6 months what did you do? We feel like we are chickens running around looking for anything to grab hold of.. thanknyou so much for any advice! 

RE: Inoperable, stage 4, glioblastoma, wild type, entering brain stem. Anyone survived longer than 6 months with this diagnosis?

by spinalgliowife on Thu Jan 03, 2019 03:54 PM

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There is a doctor down at Duke University that is doing a polio trial in Glioblastoma, if you can get in to see him, it may be worth a try: https://today.duke.edu/2018/06/poliovirus-therapy-glioblasto

Also get a sample of the tumor and send it here for genetic testing, they will send you a report of the anaomlies in your cancer cell and there may be trial drugs you can take to disrupt the reproduction of the cell:

Have we tried Genomic Profiling?

Foundation Medicine (https://www.foundationmedicine.com/

If it was lower in the spine there was a study of a cordectomy, but this is a good site for reasearch

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4123255/

Always search the Memorial Sloan Kettering Site for clinical trials, you can get your local doctor to enter into a trial, you can ask for commpasionate use of a trial drug if you don't fit into the exact parameters of a clinical trial 

https://www.mskcc.org/cancer-care/clinical-trials/search

This is the government website for clinical trials you can search your diagnosis for worls wide clinical trials

https://clinicaltrials.gov/

Also search Cedar Mt Sinia in California they are doing the most studies in glioblastoma

Try and PD-L1 inhibitor like Optivo it will extend the life expectancy some. 

Good luck

RE: Inoperable, stage 4, glioblastoma, wild type, entering brain stem. Anyone survived longer than 6 months with this diagnosis?

by ottoh on Thu Jan 03, 2019 10:23 PM

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Hi Palmerclan, Spinalgliowife has it pretty much covered, but I would add talking to someone at MD Anderson and UCSF brain center as well. I'm a big believer in the THC and CBD oils. My wife had Glioblastoma in the front right lobe and the oils helped her with nausea, appitite, sleeping seizures and other things besides helping with the glio. Look at GW Pharmacuticals clinical trials with the CBD and THC with Temador. Good luck and you can beat it! There are a lot of people who do!! 

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