Wow. I’m sooo pleased about what I stumbled upon this morning…

First…I’ve written about sea cucumbers before, see http://margaret.healthblogs.org/2010/12/06/more-on-sea-cucumbers/ and http://margaret.healthblogs.org/2009/10/15/sea-cucumbers-and-smoldering-myeloma/ So I knew there was a clinical trial testing TBL 12 on “high risk” asymptomatic myeloma patients. Here’s the link to the first trial: http://goo.gl/UGw7Q Some results were presented at the ASH 2010 meeting (see my “More on sea cucumbers” Dec 2010 post, above link). Mainly, a decrease in M-spike, which is hardly a shabby result, eh? 😉

At any rate, while perusing the clinical trials website for something totally unrelated to sea cucumbers this morning, I was a bit surprised to come across another Phase II clinical trial (New York University School of Medicine). Fantastico!!!

Anyway, since I’m still working on and editing a post (on something that has nothing to do with sea cucumbers…), I figured I’d go ahead and post the link to this second trial, , for those interested: http://goo.gl/iSXeQ Sigh, why don’t any of these interesting trials take place in Italy? …

I don’t normally publish two posts in a day, but today I’m making an exception. Remember the movie “Children of a lesser god?” Ohhhh, I loved that movie, and in fact, many years ago, I took a course in American Sign Language and decided to become an ASL interpreter (then my life took a different turn, and I went to grad school where I studied Romance langs and lits instead…). At any rate, just a few minutes ago I read a very moving story written by Marlee Matlin, whose Dad was diagnosed with multiple myeloma about a year ago: http://goo.gl/dzLMd (thank you for the link, Dr. Berenson!). Have a look…

WOW! Blog reader Kim informed me this morning that my blog has made SECOND PLACE on the list of the top ten myeloma blogs she compiled for Cure Talk, see http://goo.gl/96Yfq. I’m reallllllllly blown away. Thank you so much!!!  🙂

Hey, where’s my medal? Uhm, don’t I at least get a free lunch or something? How about breakfast? 😉

Seriously now, if I had a medal, I’d mail it off to Beth, who was THE VERY FIRST blogger in the myeloma universe (well, as far as I know), see http://www.myelomablog.com/…She’s a true pioneer and such an inspiration to all of us MM, SMM and MGUS folks. She has done and still does a lot of work for the myeloma community–fundraising, emotional and practical support and so on…mostly behind the scenes, without publicizing it. She’s also a very busy woman (like me, she has a day job and many other commitments…)…

On a personal level. As some of you know, back in 2007 Beth relentlessly dogged me to begin blogging about my experience with curcumin. I kept saying no, and she kept insisting, in her own sweet gentle way. I finally gave in…And today I can safely say that, without Beth, I probably wouldn’t have done any research on other non-toxic possible treatments for myeloma. Sure, I would have kept taking curcumin, but that’s about IT…Hmmm, now that’s a super scary thought, especially since I might never have learned about the importance of vitamin D etc etc etc. 

I owe a lot to my friend Beth. My life without this blog would have been incredibly different. Not in a good sense, either. Okay, I would undoubtedly have had MUCH more free time but…

Testing different non-toxic substances on myself AND writing/doing research for my blog has given me a huge purpose in life. HUGE! I’ve learned so much in the past four years–how to read virtually-impossible-to-comprehend scientific and medical studies, just to mention one thing. And I have also “met” so many fantastic people. Indeed, the readers I’ve actually met have become friends in real life, too…Sherlock, Paul, Diane…etc.

I cannot imagine life without my blog now…or even life without our growing MM, SMM and MGUS support group on Facebook (again, this group was Beth’s idea…I’m merely the, er, creator)…as much as I dislike Facebook, especially after watching “The Social Network”…ugggggggh!

Speaking of Facebook, I recently became a co-administrator of “Gammopatia Monoclonale MGUS,” an Italian group there, which is a huge honour for me…Besides, it’s fun to talk about myeloma-related matters in two languages. 🙂

And my blog has its very own Facebook page, which I try to keep updated (and FUN whenever possible, of course!).

Last but not least, I’m also a co-administrator of the MM Support patient listserv (have been for years, now, but this is the first time I’ve said so publicly). I don’t do much, truth be told, since I don’t have many (read: any!!!) technical abilities, but I’m there if I’m needed…

It’s a busy life…

Now, Kim, about that free lunch… 😉

Carol Johnson was 44 years old when she was diagnosed with breast cancer. Four years later, she was diagnosed with multiple myeloma…

After going through two stem cell transplants, she is now on low maintenance chemotherapy…and she is taking curcumin. Read her story here: http://goo.gl/sW1Sc

…but it’s still in draft form. Not ready, in other words. So I’ll just go ahead and post two cutecutecute videos that I watched during a break today…

The first is of a teeny tiny kitten playing an invisible harp: http://goo.gl/JS3YB  Awww!!!! 🙂

The second is the most recent Simon’s Cat video, which gave me a nice little chuckle (we’re always amazed at the amount of stuff that our cats manage to shove under the couch in the living room…hmmm, I hadn’t thought of looking under the fridge, too, though…hehe!): http://goo.gl/pA7yQ

Okay, enough. Back to work…Oh, just a little hint before I go: after months of being totally overwhelmed by the amount of info/material, I’ve decided to pick up the virus connection trail again…Let’s hope it leads somewhere…(!)

Just took these photos of our youngest kitty, Pinga, at play. They remind me (a bit) of Surprised Kitty: http://goo.gl/sRybJ

Had to share…

🙂

A blog reader (also a FB friend, co-administrator of our MM support group on FB, etc.) posted a very interesting link on the FB group’s Wall today: http://goo.gl/jOEO8 This link will take you to a “Natural News” article discussing a hot-off-the-press book written by Dr. Samuel S. Epstein, a well known cancer expert (see the article for more details)…

The NN article is very well written/organized and easy to read…And, since there is no way I could possibly summarize it, I really urge you to go have a look…

Oh, wait a sec, I just wanted to point out that the following excerpt strongly reminded me of yesterday’s post/film (ACS = the American Cancer Society, by the way):

“ACS maintains a Committee on Unproven Methods of Cancer Management, which periodically reviews unorthodox or alternative therapies,” Epstein wrote. “This committee is comprised of volunteer health care professionals, carefully selected proponents of orthodox, expensive, and usually toxic drugs patented by major pharmaceutical companies, and opponents of alternative or unproven therapies that are generally cheap, and minimally toxic.”

Periodically, the committee updates its statements on unproven methods, which are then widely disseminated to clinicians, cheerleader science writers, and the public. Once a clinician or oncologist becomes associated with unproven methods, he or she is blackmailed by the cancer establishment. Funding for the accused quack becomes inaccessible, followed by systematic harassment.

“The highly biased ACS witch-hunts against alternative practitioners are in striking contrast to its extravagant and uncritical endorsement of conventional toxic chemotherapy. This despite the absence of any objective evidence of improved survival rates or reduced mortality following chemotherapy for all but some relatively rare cancers.”

The cancer industry’s favor of pharmaceutical products is evidenced, Epstein said, “by the fact that the U.S. Food and Drug Administration has approved approximately 40 patented drugs for cancer treatment, while it has yet to approve a single nonpatented alternative drug.”

According to Epstein, “Dr. Samuel Broder, NCI director from 1989 to 1995, frankly admitted, in a 1998 Washington Post interview, that ‘the NCI has become what amounts to a government pharmaceutical company.’ Taxpayers have funded R & D and expensive clinical trials for over two-thirds of cancer drugs on the market. These drugs are given, with exclusive rights, to the industry, which sells them at inflated prices.”

Sigh. Quelle surprise…(NOT!!!)…

In 1997, at age 37, after undergoing radiation therapy, chemotherapy and a stem cell transplant, David Emerson, a MM Support list member and FB friend (also the founder of the People Beating Cancer website), was essentially sent him home to die. His doctors gave him months to live, a year at the most. Well, he refused to give up. He began doing a lot of research, consulted many doctors and ultimately went to Dr. Burzynski’s clinic in Houston, TX, where he underwent this Polish doctor’s controversial antineoplaston treatment.

Well, David really beat the odds. He has now been cancer-free for 12 years (since 1999). And that is why I watched this film today (= almost 2 hours long) with an open mind: http://goo.gl/Uw2kY 

Now, I should make it clear that I’m not endorsing this cancer treatment, since, to be super honest, I don’t know enough about it, how it works and so on…

So you might wonder why I’m talking about it today. Well, for various reasons: 1. you can watch the film for free (UPDATE (June 23): the free offer deadline has now been extended…indefinitely); 2. I found it (the patients’ testimonials, etc.) very interesting and 3. I was simply astounded at the FDA’s relentless harassment of this doctor…

A brand new study, which has just been presented at the Endocrine Society’s Annual Meeting in Boston (June 4-7), shows that maintaining a circulating vitamin D level above 33 ng/ml is associated with a seven-fold greater likelihood of having a more favorable outcome with bisphosphonate therapy. SEVEN-FOLD! Even I am stunned…

The evidence in favor of vitamin D certainly keeps accumulating, doesn’t it? By the way, the time has come for me to thank my friend Sherlock for talking to me about vitamin D about four years ago. It is only thanks to her that I had my levels checked…and then my quest began…Grazie, Sherlockissima! 🙂

Without further ado, here is the link to the press release about this new study: http://goo.gl/fcxWQ Wow…

Oh, I just looooooove this myeloma specialist!!! 🙂 Before I get carried away, though, and forget to publish the link to the interview, here it is: http://goo.gl/9QkPW Dr. Berenson makes so many good points, points that make TOTAL sense to me, that it’s a bit hard to choose only a few…

Well, I’ll give it a quick shot. I really REALLY liked what he said about about:

1. A patient’s quality of life…e.g., the effect of treatment on mental function and functional impairment: “…Often we’re measuring response, but we’re forgetting about what it really does to the patient’s lifestyle.”
2. When to begin treatment: “Just because you have a diagnosis doesn’t mean you need treatment,” he says. Yeah!
3. The overtreatment of patients…the issue of transplants…

Perhaps most of all, though, I was interested in his advice for SMM folks: in order to try to prevent future bone problems, we should be taking supplemental vitamin D and calcium on a daily basis. (I would add that MGUS folks should at least have their vit D levels carefully monitored…) YES!!!

About three minutes into the interview, concerning bone issues, he says: “Let’s start just with simple things that you can do…First of all, vitamin D, calcium…We didn’t care about that 5 years ago.” But now, “We care a lot.” As I said, I LOVE THIS SPECIALIST!!!!!! YAY!!!!!!!!

Here’s a summary (from memory and a few jotted down notes…) of what he said specifically about vitamin D and calcium. Basically, all patients, MM and SMM (and, I would add, MGUS, too) should have their vitamin D levels tested in order to have a baseline. If their vit D baseline levels are low, they should take 50000 units of vit D per week for 8 weeks, then get re-tested. If their levels have gone back up, then they are probably okay with 1000 to 2000 units per day. If, instead, their baseline vit D levels are okay, then he recommends 1200 units a day. WOW!!!!! This is excellent!!!!!

As for calcium, he recommends taking 1 gram a day of elemental calcium…that is, not calcium gluconate or carbonate. I asked him a clarifying question about that and am waiting for his answer, which I will leave here in a comment as soon as I receive it…

Anyway, I highly recommend that you all watch this amazingly compelling 13-minute interview. Thank you, Dr. Berenson! 🙂