The CPS. I have been receiving some stupendous food-for-thought (and also very kind) comments, as well as suggestions and requests that I organize and set up (and I quote) a do-it-yourself trial on curcumin (and maybe other substances as well). This reader takes up Paul’s brilliant suggestion about having (again, I quote) an â‚¬ËœOpen Label Clinical Trial’, which is often used, especially by doctors who have some idea they want to test out on a small group of patients under certain controls, but not the complete formality of a double blind placebo controlled trial of a large group at multiple sites. Such doctors sometimes using primarily their own patient population. Such a trial isn’t intended to prove the efficacy of a substance to the high standards of an FDA approved Ph. II or III trial, but mostly wants to accumulate a mass of controlled data that may show a result that will spark the interest of some other researchers or government agencies to conduct that more regulated and controlled trial to really prove what the substance seems to have shown in the open label trial.
Matters would be easier if I were an MD, of course. Ahhh, if only I could go back in time and study medicine! Drat. However, all drats aside, I am pleased to report that a sort of informal clinical trial on curcumin and MM has been in the works since May. My friend David will soon (in a week or so) be setting up what he has called the CPS, or Curcumin Patients Study, on his website, Beating Myeloma (the link to his website, which also has a MM alternative and complementary treatment discussion listserv, is on the right-hand of your screen, under MM blogs/sites). All CPS participants, i.e. curcumin-takers, will have access to their own questionnaire-type page where they can provide information about their protocols, test results and side effects. These pages will be accessible to the public. Of course, the success of this informal trial depends on the participation of as many curcumin-takers as possible. Once the CPS is available on the Beating Myeloma website, I will be sending out a message to all the curcumin-takers in my growing file, including those who have not reaped any benefits from curcumin, since it is important to know the negative as well as the positive results. Perhaps with the CPS we will be able to figure out WHY some curcumin-takers do better than others. I admit that I have my own theory, but it’s too early for me to post any more about that. Ah yes, a woman of mystery 😉 Besides, I may be completely off track, so what’s the point of speculating? More news: David also plans to set up similar trials for other substances as well. So this will be an exciting period. What I would like to do is put together a summary of the CPS and post it on my blog at some point. I haven’t mentioned the CPS before on my blog, even though I have been involved somewhat in the project as a sort of advisor, because I wanted to surprise y’all! But now that I have been asked to set up more or less the same thing, it’s time to let the kitten, not quite a cat yet, out of the bag.
My future non-ambitious plans. I also wanted to mention that, in addition to being a sometimes very outspoken member of three MM listservs, I have joined a Yahoo Health group, and intend to do more of that in the future, in part to publicize my blog and get the word out about all these promising (in vitro, sometimes in vivo) substances, in part to see what other alternatives are saying and doing. I will also be contacting some of the researchers whose studies and papers I have read. Of course, Prof. Aggarwal knows about my blog, as do my Italian doctors and a couple of very kind U.S. myeloma specialists with whom I have been in correspondence since 2005, but I plan to contact a few more. I have a list of names, now I just have to find the time to do the message-writing. I have also listed my blog in several directories (such as Technorati), both in the U.S. and, more recently, in Italy. The only problem I have run into, since I am a technical zero, is that I cannot figure out how to add (to my blog homepage) the directory button links that some directories require in order to list your blog on their website. I cannot even figure out how to put in a statistical counter! Sigh. Some day I may figure all this out. And yes, I do know that my web page has to be in the HTML mode (and I have gotten that far), but when I try to save the changes, nothing happens. It could be because of the particular blog theme I have chosen. But it’s probably due to my own ineptness. 🙂 I am now going to do some more research into the promising bit of information that Wiroj posted in his blog comment. And thank you so very much for writing, everyone!
Beth’s SCT. Last but not least, my friend Beth is currently undergoing a stem cell transplant, or SCT. I just wanted to mention that things are looking goooood. Her first post-transplant week has ended, and she is doing well. You can check out her progress by clicking on the link to her blog (Beth’s Myeloma Blog) on the right-hand of your screen. Go, Beth!