Wednesday, September 21, 2011

A very cool dialogue with an online MM presence treated very differently than I...

Hello folks.  I will shortly be giving you an update on my visit to Arkansas last week (which was good, still in complete remission, a couple of mildly unsettling things to report but nothing major).

But I didn't want to forget about a very pleasant conversation I had in the guise of a focus group on bone issues and bisphosphonate treatment.  Sponsored by the manufacturers of Zometa, I've done one of these before in a larger group and they essentially ask for patients' opinions of how MM patients learn of bone problems, if they have a good understanding of them, how they are treated, etc.  I'm appreciative of the opportunity to contribute to consumer research that will help these companies improve the efficacy of treatment.  I certainly think that had the medical community -- and I include in this some generally good doctors that I saw before BB -- had a better idea of this, I'd not have had the broken back that I ended up with in Arkansas.

Anyhow, what set this apart was not so much the questions but the other person doing the answering.  As he is about as public as I am in the MM "blogosphere" I doubt he will mind that I mention his name: David Emerson.  I remember reading some of David's posts on Myeloma on various Internet message boards when I was evaluating treatment.  David seemed very knowledgeable, and if I recall correctly was well aware of BB's methods, which I believe he was fairly even-handed about.  I remember David being a fan of alternative medicine.  I've joked before that the three approaches to treatment are: cure, control and curcumin!   But after speaking with David, my sense is that he believes certain things (eating well, exercise, curcumin as appropriate) are good things to do regardless, and in this I fully agree although outside of Indian food (which I love) I don't take much of the orange spice.

David and I had a remarkably interesting exchange, and shared most of the same opinions on bisphosphonate treatment (essentially: it's important, and people don't know or care that much about it or its side effects because Myeloma gives you much bigger fish to fry).  David and I also both, I think, believe we are effectively cured (or in my case, close to the end of the treatment tunnel).  But we couldn't have arrived there more differently.   David was treated by Dr. Stanislaw Burzynski at his clinic, with antineoplaston therapy.   He's lived quite some time without any disease recurrence -- I think if BB looked at some blood work and marrow and it was negative, he'd probably pronounce David cured.

Burzynski is the subject of an interesting documentary which essentially claims that he has been smeared by the government and the American Cancer Society with the intent of covering up the success of antineoplaston therapy.  I'll spare you the counterarguments.  Let's suffice it to say that this is EXTREMELY controversial -- much more so than BB.

I thought it was very interesting that people coming from completely opposite positions on MM treatment found common ground and had a delightful conversation.  Wouldn't it be nice if we could make that happen in politics?  :)

I'm a pragmatist.  I'm much more likely to be cured of cancer than that is likely to happen.  :)