Facebook outreach and the Myeloma Beacon article on curcumin

I never understood all the hype about Facebook…until relatively recently, that is. Let me explain…a couple of years ago, at the insistence of two myeloma list friends, I signed up on Facebook. To be honest, though, I found it all rather boring and eventually deactivated my account. Then, last fall, after learning that my sister, niece, cousin and a couple of my best Italian friends were on Facebook, I reactivated my account. I now actually see a reason for being there: connecting with friends and family…and having some fun. My cousin posts some hilarious stuff…

And now we get to the point of this post: yesterday, while nervously waiting to go pick up Pinga at the vet’s, I decided to put my blog on Facebook. On a whim. I don’t yet have a purpose in mind, except the obvious one, I suppose, of reaching out to others (even though, truth be told, I can barely keep up with my blog mail as it is!). I also thought that Facebook might offer a more direct and informal way to connect with other blog readers…so, if you are a member of Facebook, why don’t you become a fan of Margaret’s Corner, too?

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The Myeloma Beacon just published an article on curcumin, see: http://tinyurl.com/yebc4qh. I was “interviewed” (via e-mail exchanges, since I live in Italy) by Francie Diep, who did an excellent job. I would only like to add that we will (almost certainly) never see wide-scale clinical trials testing curcumin, since, as I have written in past posts, drug companies have no interest in a substance that cannot be patented.  

Oh, and I would also like to explain what happened in the fall of 2005, which is when my former hematologist (who retired in the summer of 2006) urged me to begin chemotherapy. I refused, even though back then I didn’t know much about myeloma or even the difference between active and asymptomatic myeloma (etc.)…

I immediately contacted three internationally-renowned myeloma specialists who told me that, in the absence of certain symptoms, early intervention was a bad idea. They confirmed that I was still…barely…in the “watch and wait category.” In a nutshell: no CRAB symptoms, no chemo….this has become my mantra…

Anyway, soon thereafter I discovered the curcumin-myeloma clinical trial at the MD Anderson Cancer Research Center in Texas, and my life changed in many (positive!) ways…

I have been taking curcumin now for more than four years. Still stable, still smoldering…