Friday, March 14, 2008

MM Complementary Matrix

Although I haven't had much to share I have been actively lurking. Watching my friends that I have never met walk (or in some cases run, i.e. Don!) the MM triathlon. A bit of swimming and peddling thrown in for good measure. We have an extremely dedicated community full of compassion and intelligence. Getting ones mind around just a fraction of the information available is staggering. The myeloma matrix available from the IMF which tabulates current clinical and pre-clinical drugs needs to be extended to the supportive therapy realm of supplements, diet, exercise, mindfulness and the likes. One quickly notices that anything in clinical or pre-clinical phase that is available without a prescription is jumped on by the community. For example green tea extract, curcumin, Ganoderma (Reishi or Lingzhi mushrooms) and capsaicin. It is highly unlikely that any agent especially the ancient already tried ones will be curative. On the other hand in combination or as supportive or maintenance therapy substances with as few side effects as curcumin are a welcome alternative.

As for GRN163L, it throws me for a 24 hour yuck. A slight fever and associated headache and body cramps. This week Zometa was added just before the GRN and it doubled the yuck. In fact my fever went up so high (101.5/38.6) they wanted to see me and do a bunch of cultures to rule out infection. I get a slight PT-INR increase for several hours, but it returns to normal within a day. I'll get my first 3 week response update on Tuesday. I'll be sure to let you all know what I find out.

In the mean time maybe some of the more industrious, energetic and resourceful MMers will do some Complementary Multiple Myeloma Matrix brain storming. :-)

1 comment:

Margaret said...

Hi LPC! I agree that the IMF matrix should be extended to supplements and diet. That would be helpful mainly to newly diagnosed folks.
I see that the MM-stem-cell-terminator cyclopamine is listed in the pre-clinical phase (yippeeeee!). And there is also a gossypol (cotton plant) analogue, AT-101, although it apparently has a lot of GI problems associated with it, as I posted recently on my blog.
With the exception of cyclopamine and possibly DMAPT (from feverfew), I agree with you on the issue of "curative."
But I will be satisfied if a combo of these supplements can keep me (and others) stable until researchers find a cure in the form of a non toxic treatment that will annihilate MM stem cells (DMAPT or cyclopamine, e.g.).
Sorry to read about your 24 hour yuck! Major bummer. Hope you are feeling better now.
Take care,
Florence, Italy