Hi,
My name is Ashley. My mom was diagnosed with GBM unmethylated December 2017. She is 54 and healthy with a huge loving family that wants her around longer. She went in for emergent surgery due to headaches/pressure and this is how the tumor was found. They have removed the majority of the tumor. She is half way through radiation/chemo right now. She is essentially doing great as she has only hair loss and fatigue at the moment with some cognitive delays at time. I have researched extensively Ben Williams info, the Musella foundation, articles, journals etc. to help find the best treatments. Right now she is on these supplements:
fish oil 3g
melatonin 20mg
PSK trying for 3g
Genistein 125mg
Curcumin 4g
green tea (one-two cups a day)
Boswellia 1000mg but will be going up to 4200mg
Resveratrol 100mg/kg roughly 6000mg
Silibinin 420mg
Medications:
celebrex 200mg BID (recently just started)
Metformin 2000mg (will start soon-introducing drugs one at a time)
Disulfiram (500mg on chemo days with 250 on non chemo days-4mg copper also with this)-starting soon
Aralen (chloroquinine) 150mg BID --starting soon
Doxycycline 100mg BID-unsure about starting this? (this was recommended by Ben but I just haven't seen many recent trials using this)
My biggest question is how long do we have our family members take this? Is it every day or on just chemo days? There isn't great detail on how long people should be taking these.
Thanks,
Ashley
In theory at least, these things could all have biological activity independently of chemo, none of them are *only* used for chemosensitization. In general cocktail ingredients are taken every day, unless they are being used specifically as chemosensitizers (for example verapamil).
ReplyDeleteAlso, most continue with their cocktail for at least a couple years, the timeframe of greatest likelihood of having the tumor recur or progress.
Out of curiosity, how did you arrive at the resveratrol dose of 100 mg/kg? This is the highest resveratrol dose for a human I've yet heard of.
I was going off of the dosage listed in Ben Williams updated drugs/supplements list on the musella foundation but I just realized I missed read the trial being done in rats. I'm going to have to look into that dosage more.
Delete100 mg/kg in a rat would convert (very approximately) to ~ 16 mg/kg for a human, using allometric scaling conversions.
Deletethank you for the help and for catching that. I've been trying to stay up on everything but it has difficult to keep everything straight.
DeleteI actually was just using the recommended dosing based on the supplement also. I attached the link to the brand but that is another reason I went for that dosing. https://www.amazon.com/Pure-Resveratrol-Strongest-Effective-Capsules/dp/B015QGG0GK
DeleteInteresetingly the label doesn't say what percentage of each capsule is resveratrol. The first ingredient is Japanese knotweed root (containing an unstated percentage of resveratrol), followed by pure resveratrol. The actual resveratrol content of each 2000 mg capsule isn't disclosed.
DeleteA few additional notes:
ReplyDeleteAs the long-chain omega 3 fatty acids EPA and DHA are the most important ingredients in fish oil (in terms of cancer therapy), the target dose of fish oil daily really depends on the EPA and DHA content. My recommendation would be 3 grams daily of EPA + DHA, however many grams of fish oil it takes to get that amount of those particular fatty acids.
Doxycycline is part of the protocol used at the Care Oncology Clinic, though there is more (preclinical) evidence supporting the related drug minocycline for GBM. For those lucky enough to get into immunotherapy clinical trials or have the money to pay for it (vaccines, checkpoint inhibitors), I wouldn't advise these antibiotics as they could disrupt the balance of intestinal bacteria that is linked to the success of immune therapies.