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Title : General question about supplements and interactions
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General question about supplements and interactions

Hey all, thanks for creating and maintaining this fantastic forum for patient-driven protocol development.  I wish I'd found this a year ago when my partner was first diagnosed with GBM.  I definitely would have pushed for adjuvant complementary therapies during the initial treatment phase (Stupp protocol plus Optune).  My partner was first diagnosed in Jan 2017 and the first recurrence showed up last month.  Two surgeries, two gross total resections.  The recovery from the first was fairly smooth, but this one has been rough.

I'm getting some pushback from doctors about using botanical extracts, and I'd like to know how people here handle that sort of thing.  The complaints are that these extracts are not standardized and poorly regulated, so varying dosages, contaminants, or even unknown active ingredients might cause side effects or unexpected interactions with other treatments.  A vascular specialist said he’s seen a lot of weird things happen with supplements, and our hematologist agreed.  My partner has a gnarly blood clot that requires intervention, which is why those doctors are involved.  For what it’s worth, our oncologist didn’t raise any of those concerns.

At my insistence, we’re crafting a custom treatment protocol for the recurrence.  Monotherapies and control arms make clinical trials less interesting to us.  We started CCNU and pembrolizumab last week.  Our oncologist is conservative with advice but is willing to let us try whatever is available.  I’ve been looking to add other treatment modalities through OTC supplements.  I got my partner on Vitamin D and calcium right away (not sure why every cancer patient isn’t put on these immediately), and I have melatonin and PSK ready to go.  I’m also strongly considering curcumin, ECGC, boswellia, THC/CBD, and lipoic acid.

How do people here deal with the sorts of concerns raised by these doctors?  Do you find that weird side effects and interactions are rare, or are they common but just worth the risk at this point?  Does everyone end up just ignoring some doctors sometimes?

Thanks,
Brandon

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