Primary brain tumor, high grade glioma, stage 3 or 4

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RE: Primary brain tumor, high grade glioma, stage 3 or 4

by nitro18 on Mon Feb 11, 2019 01:54 AM

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He gets TMZ one week per month. He wears Optune everyday, all day ( for the most part except when we have to change the arrays.  So yes, chemo and Optune together. Won't have our first MRI till mid March. Hopefully, it is working well for him.  

RE: Primary brain tumor, high grade glioma, stage 3 or 4

by ToddlerFather on Mon Feb 11, 2019 02:13 AM

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My metastases (at lungs, from a primary thyroid cancer) seem to be diminishing thanks to LDN:

https://www.ldnresearchtrust.org/
http://www.lowdosenaltrexone.org/

But the immune system in the brain is too different in order to have any indication that LDN, although having recognized effects on some types of tumors, would act on GBM. But since Naltrexone, the high dosage counterpart to LDN, is used to treat opiace addiction, at least is known that it can cross the blood brain-barrier, one of challenges in treating GBM. 

Besides what is already on clinical trials, one possibility to be aware of is NADA:
https://en.wikipedia.org/wiki/N-Arachidonoyl_dopamine

Depending on tumor genetics, for some mutations it could be almost like an install kill switch for cancer.
http://mct.aacrjournals.org/content/16/1/57

NADA occurs naturally in the brain, but in very small amounts. And there is no process yet to manafacture it in scale even if its anti-cancer effects ever get confirmed, but as long as other treatments buy him time, this and other alternatives can be developed. 

What would be interesting to tune-in to those possibilities would be knowing more about the specific mutation that created his tumor(s). 



RE: Primary brain tumor, high grade glioma, stage 3 or 4

by jesichashope on Wed Feb 13, 2019 03:26 AM

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I read about the Optune treatment. It may work, don't know. I know that the place I told you about Cytoluminator has done dozens of glioblastomas, some are kids.  I know of one child now over 5 years, hers was inoperable given a couple of months to live. Now she is in school. The treatment uses nanotechology that gets the treatment right into the cells to kill them. It is very reasonabe too. Their new patient site is up and I saw some before and afters of brain cancer. Google ourcancerspot dot com it is worth reading and contacting them. 

RE: Primary brain tumor, high grade glioma, stage 3 or 4

by CallaLily007 on Fri Feb 15, 2019 02:00 PM

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Thank you for your reply, nitro18.  Why radio/chemo wouldn't help your husband.  I am looking for alternative treatment, so that my loved one doesn't have to go through the pain.  But it sounds like radio/chemo is the only choice?!

RE: Primary brain tumor, high grade glioma, stage 3 or 4

by nitro18 on Sun Feb 17, 2019 12:35 AM

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I'm sure that for some tumors there are other alternatives. The problem we found is that when you finally find out you have a tumor , because of how fast it grows, you don't have a ton of time to research it.  I think in retrospect, I might have looked harder into immunotherapy and vaccines. I'd have had 2nd opinions with Duke and/or MD Anderson in Houston too. For now we are going to do standard treatment but it that really starts to cause a loss of quality of life, we may persue other avenues and look for trials that involve vaccines or immunology or off the wall uses of regular meds. Have you checked out in facebook the group  GBM Survivors to Thrivers.  Lots of ideas come from there.

RE: Primary brain tumor, high grade glioma, stage 3 or 4

by ToddlerFather on Sun Feb 17, 2019 01:02 AM

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If time is of the essence, I would get genomics testing of the tumor tissue real fast. This will help triage possible treatments faster, mostly by knowing what has little chance of working and what has some chance of working. There are no absolutes, but it can make a difference.

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