Update (=May 6 2013): I was in such a hurry the other day that I forgot to include the link to the Myeloma Beacon article, duh! Here it is: http://goo.gl/zTFiF
Sorry for the rather rude title of this post (and I’m not rude at all in real life…quite the opposite, in fact!), but I was simply infuriated by a Myeloma Beacon article I read this morning. It’s about the Spanish PETHEMA smoldering myeloma study…the one that I have always ranted and raved about, the one that could turn me into a screaming Tasmanian devil. 😉 Well, I feel like ranting and raving about it again today, too, but I’ve already written so many enraged posts about this study, so there really is no point in wasting my time (and yours).
The Spanish PETHEMA study has concerned me from the very beginning. I wrote about it on my blog (several posts throughout the years (just do a search for “Spanish SMM study”), so I won’t repeat too many of the points I have already made, except to say that, based on the PETHEMA classification, I would be considered high-risk SMM and would be eligible to enroll in that trial. But I wouldn’t even consider doing so, for the following reasons…
1. I have been leading an active, normal-person life since my diagnosis with SMM (fall of 2005; MGUS diagnosis in 1999, btw), especially after I began taking curcumin (= Jan 2006). So I have been stable and smoldering for more than 7 years now, in spite of a high IgG, in spite of a high BM paraprotein level, etc. etc. etc. Just to give you an example, my husband and I just got back from Edinburgh, where we were climbing to the top of ruined castles and walking from morning till night. In other words, I have a very high quality of life.
2. The PETHEMA study never talks about its SMM patients’ quality of life. How are they doing? We simply don’t know. Overall survival doesn’t give us any of the important details. I don’t know about you, but QOL is very important to me!
3. The Mayo Clinic and PETHEMA cannot even agree on the definition of “high risk SMM.” The Beacon published an article to that effect in Jan 2013. Uhm.
4. Many of the researchers involved in the PETHEMA study have very close ties to the pharmaceutical companies that produce the very drugs used on these SMM patients. One is even a Celgene employee (hello???). That’s like having a safety study on a new Honda model…but the only people involved in the study happen to be Honda employees or people who have received money from Honda. Could we trust the results from such a study?
For these and many other reasons, I think that SMM folks with no CRAB symptoms are better off taking curcumin and/or other non-toxic, anti-MM, scientifically-backed supplements…and also being careful with their diets (no sodas, no aspartame, etc.) and stress levels.
I know it’s hard, believe me!, and I know we all want to be proactive. But, in MY opinion, studies such as these can be very dangerous. As I said, it’s just my own opinion…But it’s also MY life.
Okay, that was my comment. By the way, I’m not in any way judging those who are participating in the PETHEMA study. Believe me, I really do understand that MGUS and SMM patients WANT to be proactive. So did I! We don’t want just to sit back and wait. So if our doctors suggest that we participate in a study such as the PETHEMA one, I’m not surprised that many folks would go for it. Well, I hope, I really really hope!, that all of these patients are doing well and are active and happy, with a high QOL. I fear that is not the case, however, since I read the full PETHEMA study a few years ago, and many of the patients did experience side effects, bad ones in some cases (as I recall, a few even had to leave the study…but I write that without double-checking…).
Another thing that REALLY concerns me: the long-term effects of early treatment…in the absence of CRAB symptoms…
I mean, by now we know that MM cells become resistant to conventional treatments at a certain point (see my recent rant-and-rave posts on the Vermorken study, e.g.). Therefore, beginning treatment before any CRAB symptoms arise just makes no sense.
No, it just makes no sense…
Just my own opinion, of course!