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).
However, I would like to point out that I left a comment (written a bit hastily…and in fact I used the past simple instead of the present perfect in one spot, argh!) on this article, as follows:
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!
Can you tell me how high you IgG and your BM Paraprotein levels are?
I haven’t had tests in months now, for various reasons (unrelated to MM)…In a nutshell, I was going to have them months ago, but my father-in-law’s health really began deteriorating, and it was a very stressful, busy period for the family…
Then I wanted to have tests done before leaving for Edinburgh, but I found a mistake in my doctor’s “test request,” so again I was forced to postpone. I hope to get that mistake sorted out this week and go for tests next week…
Another issue is that I’m not very happy with my current lab, except for the fact that I can make an appointment, which cuts way down on waiting time (hours!). But I would much rather to go to the university hospital lab, which is better, more trustworthy, etc…Well, we’ll see.
But just to give you an idea, my m-spike was 2.76 in my most recent tests.
I haven’t had a BMB since 2007. My hematologist doesn’t think I need another one as long as my markers remain stable, which is fine with me, since I suffer so much during the procedure (due to my thick, strong bones!). The results of my last one (Jan 2007): less than 40% neoplastic cells…compare that to my 50% result in the fall of 2005, pre-curcumin.
Margaret, have you hat a skeletal survey or PET scan to see if you had any bone lesions? It seems to me that M spike is sorta high. My wife was dx with some lesions found on a skeletal x-ray. Her M spike was 3gr and of course the light chains were also indicative of MM. Her BMB was also at 40% with no aggressive DNA in the FISH test. On Rev/Dex last two years and down to 1 on M spike. Cut down Dex to 12mg from 40 over the months. Hope to eliminate it altogether. She is also on lots of fresh water and various supplements for bone strength and to knock down the NKB. Her last skeletal survey showed the lesions healing. Also, a DEXA scan showed normal bone density. Hope she continues to do well. The oncologist wanted her to go in for a SCT, went for interview, no thank you. Also, wanted to start Velcade, no thank you. Might reconsider it in the future though. I hope you are doing well. Happy anniversary to you and Stefano.
I congratulate you Margaret for having kept the progression in bay. Considering what I know now (having been treated for full blown MM) , I would have preferred to have my SMM treated. My MM attacked my bones, and I developed a lesion to my hip which made me limp, I still cannot walk long distances. I consider that to be more serious quality of life issue than my hardly any effect treatment with novel agents (I did not go for transplant, … yet).
meant to say side-effect (not effect) in the last sentence