
Two years ago, Ricky Fontenot from Arkansas had a 6-inch gastrointestinal tumor removed. He was on multiple chemo medications but more tumors kept appearing and he was told to go home and tell his 11 year old son that he would soon be losing a parent. But he got on cannabis oil and his tumors immediately began dying off. He also was able to eliminate his oxycodone medication within days.
I’d like to talk to this patient more. I have GIST Stage IV and although I have avoided the TKIs he has talked about and the pain pills I’d like to know more about is diagnosis and if this is really remission.
I did 1 gram a day of Co2 distilled cannabis oil in a gel cap at bedtime for 4 months. I did not get “high” as my body didn’t respond in that way. I’ve been on a maintenance dose for 3 years now of 1/8th a gram a day at bedtime . . .Mostly CBD:THC 50:50% but when trying to reduce tumors I was on a higher THC concentrate. It did NOT reduce my GIST mets (in my liver). The maintenance dose did NOT keep new tumors from growing. I’ve put up my own website because my subset of GIST is so rare, sdhcancer.org . . . I can’t even find a doctor in the world who studies “us” . .. I’d like to know what type of GIST this patient had whether it was “regular” c-kit/pdgfr mutated or SDH deficient GIST (I feel they are different cancers and need to be targeted differently. Because the meds he listed, Gleevec, Sutent and Stivagra aren’t proven to work on SDH Deficient GIST I’ve refused them. My oncologist last week again encouraged me to take Gleevec since my peritoneal mets have grown but again I said NO. I did want my initial four months of a gram a day to work. I wanted to walk into NIH/NCI and say “Look” . . . Unfortunately it did not control tumor growth nor reduce tumor size . . . I’d like to hear a follow up on this in another few months. MD Anderson is one of the research hosptials that has some GIST experts. Just really curious how this has worked for him and yet 3 years ago (I was also juicing fresh cannabis leaves everyday) had success on this type of GIST and it has not touched mine.
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