I decided to go ahead and finish Part 2 of my vaccination post even though I didn’t get any feedback on Part I (April 21st post), which, I confess, led me to think there might be no interest in the subject of myeloma vaccinations…Well, no matter, it is a subject of interest to me, and this is my blog 🙂 , so here goes… 😉
Reading on…the authors of this new study (http://goo.gl/KHCQh) raise the question of long-term impact of vaccinations = a big unknown. After 12 months, five out of nine patients still had stable M-protein levels. Three of these patients, however, had had local radiation for a lesion 6 to 7 months before the vaccination study began, which might (or might not…) have made a difference in terms of lingering effects. Incidentally, it turns out that the patient who progressed to stage III (mentioned in my April 21st post) was one of those who had undergone “radiation”…
Another thing that turns up in the full study is that five of these patients (= more than half, that is) had received bisphosphonates. Not sure if that is relevant, but I understood that these patients were not supposed to have been previously treated… Now, aren’t bisphosphonates considered to be part of a conventional treatment strategy? Hmmm…I am a tad perplexed, here…
Well, let’s go to the Discussion part where the authors provide a list of earlier studies…Unfortunately, I didn’t and don’t have the time to check them all, but I would like to note that previous vaccination studies also involved stage I myeloma patients. What makes this January 2011 study different, the authors state, is the fact that it is the first DC-based Id vaccination (where DC stands for dendritic cell, Id for idiotype) tested on stage I patients who had not been previously treated…hmmm, with the exception of the three radiotherapy patients, I guess…
Point is, according to the authors, these stage I patients had less compromised immune systems compared to the advanced stage patients in previous vaccination trials.
Possible problem: apparently, the vaccinations stimulated an increase in the patients’ production of interleukin-10, or IL-10, which, even though it is a known anti-inflammatory cytokine, happens also to be a proven growth factor for myeloma cells (see http://goo.gl/jfZkT). Ehm, don’t really want that, do we? Authors of another vaccination study, published in 2007 (http://goo.gl/SaM1i), report that two out of ten patients had increased productions of IL-10 and TNF-alpha several months after being vaccinated…Well, this certainly doesn’t sound very encouraging, but I need to do more research on the Th1 and Th2 responses before I’m able to make any judgments/reach any conclusions…
Let’s see. A positive finding of the January 2011 study is that immune responses were detected in a few of the patients…
Wait a sec.
As I was writing the “positive finding” sentence and racking my brain to, er, find something, er, positive to say about immunotherapy and this new vaccine study, the only sentence that kept popping into my mind over and over again, as much as I tried to ignore it, is the following: HERE WE BLOODY GO AGAIN!
I may be wrong, terribly wrong, of course, and, whenever that happens, I am always ready to apologize publicly…but in this case my gut feeling, which has rarely led me astray, tells me that it’s wrong, just plain WRONG, to screw around with smoldering patients like this. (Don’t even get me started on that ongoing Spanish SMM-lenalidomide/dexamethasone trial…WHICH INFURIATES ME BEYOND BELIEF!!! Grrrrrrrrr…Oh, as if ONE such study weren’t enough!!!, a National Cance
r Institute study is in the process of recruiting so-called high-risk SMM folks RIGHT NOW for a similar study to be held in the U.S. GOOD GRIEF!)
I personally would never participate in a vaccination study… not as long as I remain in the smoldering stage, that is…
There are simply too many unknowns, too many potential risks of making things worse…Even the authors admit that they don’t know what could happen to patients in the long-term…I am worried about them and can only hope that they remain healthy…
I would like to conclude with a link that a blog reader sent to me: http://goo.gl/7ExWQ Hah. It figures. Whenever the potential of making money enters the picture…big pharma* jumps on the bandwagon, ready to make a few million or billion bucks, give or take a few…GOOD GRIEF (again)!!!
*A related note: a Science Daily article (see http://goo.gl/U6RET) tells us that big pharma spends about twice as much on advertising than on research and development. We are talking billions of U.S. dollars, here. And that article was published three years ago. Quelle surprise…sigh…
Interesting post Margaret, and I’m very interested in the idea of vaccines as the rest of the treatment is hard work!!
I think it is all about terminology with these trials isn’t it…I would imagine that they were saying that zometa is not considered chemo etc and perhaps that is what they class as previous treatment. The trial I am on now is for ‘untreated’ patients and yet I’d started on zometa a month or two before. Not sure about the radiation side of it though, unless that was for something different?
ANyway, to finish…it’s all a real minefield, but as a patient, and even one with young kids, sometimes I believe that you have to take risks to get results in the end. If no-one took part in trials we wouldn’t advance in medicine. ALthough I appreciate it is about taking the right risks…mine are limited on my trial though I hear things all the time. Personally I need other options as I keep plateauing early on in treatment (revlimid and now velcade)….so the idea of no new drugs being trialled and coming through is scary for me….36 years old and I SO SO SO want to make it to 40, and to seeing both of my children getting to secondary school in 6 years time…..a big ask without new drugs 🙁
I’m not v good with the medical side, but wanted to make a comment as I often read your posts and don’t….just being busy I guess, but when you take the time to write them, we should take the time to reply!
Thanks Margaret
Debs
Just as an aside…..Having gone from smouldering to full blown (we thought), I have now started on the Myeloma XI trial, but do wonder if we should have held out a bit longer….better the devil you know and my life has definitely taken a downward turn since starting treatment as however well you tolerate it, it does exhaust you.
Glad you persisted with the topic Margaret as I didn’t see your previous post and I have learnt something with this one. I always thought of vaccinations as preventative medicine whereas the study is about vaccines as treatment of existing disease. I wonder if that’s why you didn’t get much response from blog readers who already have myeloma.
I know that vaccines are not without their own risks and complications but if they do manage to tap into our immune system to deal with myeloma that has to be more attractive than existing treatments on offer.
hi margaret,
I am also a Curcumin enthusiast/evangelist like you. I am supporting my mother’s breast cancer alternative treatments.
Btw, there is a webinar on Curcumin to be hosted by Nutrition Research group at NCI
http://nanaymiriam.wordpress.com/2011/05/04/webinar-is-curcumin-the-spice-of-life-a-look-at-cancer-prevention-evidence/
I have read both your posts on vaccinating studies. On the one side I agree with you that there are to many unknowns as for the outcome, and may even be a risk of getting worse. On the other hand ,as Deb mention in her comment, if nobody took part in trials we woud^nt advance in medicin. I was dx with MM in july 2009, no treatment yet. At dx I had severe anemia and iron deficiency, but no other crab symptoms. My anemia is now sort of controlled with iron infusions when needed. My kidney values are not so good, but still I manage without any treatment. My onc calls it MM, but I think it is more like SMM for the moment. But I think they do not use SMM as a dx in Norway either, same as you have said about Italy.
A couple of times my bloodtest have come up with numbers that made my onc concider treatment, but then they have stabilized after some weeks. Thanks to curcumin?
I follow the listserves, your blog, the facebook myeloma group, and try to read all the info I can find. And honestly I have to admit some of the info really scares me. It seems that many of the problems and pains people have is due to the treatment/chemo they get.
After my dx I think I gladly would have participated in a vaccination trial, or started chemo, thinking that would help me. Today I do not know. For the moment my goal is to avoid chemo as long as possible. As for vaccination trials I do not know, but it is no such trials going on in Norway as far as I know, so I do not have to make a decition for the moment.
The info I get from your blog, and listserve members, helps me in my decitions. So keep up with your studies and your lovely comments. I think it is many out there following your blog and getting great comfort and useful information from it even if they do not comment.
Margaret,
I didn’t respond to the first post about dendritic cell vaccine but this is always a topic of interest to me. For some reason dendritic cell vaccine research has long time intrigued me and I am very grateful to you for your summary of multiple research studies of this and playing the devils advocate to inform us of all sides of the research. How interesting about the IL-10 increase.