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…

2 Comments

  1. IHello, my name is Janet and I have been diagnosed with smoldering myeloma and I am quite interested in the Curcumin dose that you took to stop the increase of the growing cells that would require chemotherapy. Could you please respond to me at my email address? I thank you in advance for any and all info regarding the doses. Thank you again, Janet

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