Oh, I’m fuming. I’m frothing at the mouth. I’m verrrry upset.
This morning I read, then re-read after lunch, the “Myeloma Beacon”‘s January 13 interview with Dr. Ola Landgren: http://goo.gl/iZizX By the way, my comments will make much more sense if you read the interview first, so please click on that link before proceeding…
Okay, here goes. I suppose it’s no secret that I’m strongly (and that’s a bloody understatement!!!) opposed to “early treatment.” From what I’ve read and been told by MM specialists, early treatment does NOT bring any benefits and could in fact make things worse. Much worse.
Of course, I’m referring to chemo treatment.
Perhaps some valid treatments might appear on the horizon at some point in the future…treatments for smoldering folks, guaranteed not to poke what we MMers call “the beast”…guaranteed not to worsen our quality of life…But that is not the case right now.
If you’ve been following my blog since early 2010, you may remember that on a number of occasions I’ve railed against the infamous SMM-chemo trial led by a group of Spanish researchers…a bunch of whom, including the head researcher Dr. Mateos (!), have verrrry close ties to Celgene Corporation, the multinational drug company that just happens to produce one of the drugs tested in the trial (see http://goo.gl/7DUUZ).
Hmmm. Talk about going on bright red alert… 😕
I just asked Stefano if he would buy a camera from a company that tests its own products…no independent testing…well, you can imagine his reaction…!
He also remarked, “Hey, but just think…if Celgene were able to expand its market to SMM folks…”
But the Celgene connection is not the only reason I’m outraged that such a trial even exists…(FTR: the Spanish study has gotten bigger; it now includes 119 patients–57 in the treatment arm, 62 in the non-treatment one, average age = 61 and 65, respectively.)
HOW ARE THOSE SMOLDERING FOLKS DOING? AND HOW WERE THEY DOING BEFORE THE TRIAL?
In the Beacon interview, Dr. Landgren talks about “progression-free and overall survival benefits.” But what I would like to know is this: what about quality of life? What about toxicities? You may recall that some of the SMM patients enrolled in the Spanish study presented at ASH 2009 developed some “serious adverse events” or SAEs (for an overview of “SAE,” see http://goo.gl/JqBAH). A couple of patients left the study because of those SAEs.
That is not acceptable. NOT.
Okay, I just looked up the ASH 2011 (updated) Spanish paper: http://goo.gl/gzVSA Oh sigh, I don’t have the time or will right now to examine all those numbers, but apparently there were no G4 toxicities (remember that G5 = death!), “just” a bunch of G3s. Now, I don’t know about you, but after reading that list of G3 consequences, I began getting a case of the itches. And then I read that “tolerability is acceptable.” Uhm. For whom?
I repeat, HOW ARE THOSE SMOLDERING FOLKS DOING? AND HOW WERE THEY DOING BEFORE THE TRIAL?
I would like to avoid repeating or paraphrasing what I’ve already written on the Spanish study. But I would like to discuss something said by Dr. Landgren that shocked me right out of my socks this morning. He says that he doesn’t like the expression “high risk” (well heckaroni, WHO does?!!!)…not for smoldering patients, not for multiple myeloma patients. In his opinion, the former (= the high risk SMM people) should be called “early myeloma” patients.
WHAAAM! Well, that hit me right in the gut. I mean, we all know what a huge emotional impact words can have on us, right? Shit. (Sorry.)
“Early myeloma” may sound okay to someone who is healthy, but I doubt that it sounds okay to any of us smoldering folks. Truth be told, I don’t care one whit for “smoldering,” either…I prefer this sweet sound of “inactive.” Words…gee…gotta be careful…
But that was only my first reaction. Then I saw red. After all, statistics tell us that only a relatively small percentage of SMM folks progress to active myeloma. Okay, as far as I know, we don’t have any specific progression statistics about “high-risk” SMM folks, but (again, as far as I know) this expression was invented by the Spanish Celgene-connected authors. Well hey, I’m in that high-risk group, but my QOL is very high, and I haven’t progressed yet. And it’s now been more than six years. (Ooops, knocking on wood…) 😉
Now, a few not-so-bad things came out of this interview.
- What Dr. Landgren says about treating “early myeloma” does make sense. That is, treat cancer in its early stages instead of waiting for things to get worse. (But, I repeat, NOT with current treatments! It’s too risky for us = the smoldering hot group. Why take the chance?)
- When Dr. Landgren was asked if he thought early treatment in high-risk SMM folks would be the best option, he answered: “nobody knows at this time.” (Hah, no kidding. And did you notice that he repeated “nobody knows at this time” TWICE during the interview?). So he wouldn’t give lenalidomide and dexamethasone to his own smoldering patients. Good to know.
But then…in the next breath he says (and this sent my socks shooting way out into my neighbor’s yard…) that in the spring of THIS YEAR he is going to supervise a SMM study that will examine a treatment regimen involving eight cycles of carfilzomib, Revlimid, and low-dose dexamethasone followed by Revlimid maintenance for a minimum of one year. We are using carfilzomib instead of Velcade in order to increase the efficacy and at the same time reduce the side effects, in particular peripheral neuropathy […].
What the…?????? 😯
Luckily, he added, Let me stress again, however, the need for more studies before any of these ideas start to be considered “standard of care.” Bloody hell.
Reading stuff like this drives me bonkers. I mean, doesn’t it make much more sense to invest money in developing a curcumin analog (or another promising, similar, non-toxic, natural substance with proven anti-MM effects)? There is so much scientific evidence (and now, so many anecdotal accounts, too…Mine is not an isolated case anymore, thank goodness!) to back up the potential usefulness of curcumin in the treatment of myeloma at any stage, also in combination with chemotherapy (by the way, I refuse to use the expression “novel agents”…but that happens to be the topic of a post that I began writing a few days ago, so I won’t go into it now. Stay tuned…)
Where was I? Ah yes. We need to find a way of giving curcumin an “umph!,” that’s all. Luckily, there are a few research teams that are investigating that right now…And I wish them LUCK! Now, that is the sort of trial I would love to participate in…a curcumin analog trial…
Well, I tell ya, my stomach is tied in a knot. The “early myeloma” business really upset me…And even now, close to dinnertime, after spending a lovely sunny cold morning planting tulip and other bulbs in our back yard, I am still a bit upset, which means I’m not thinking as clearly as I should be, and that I might possibly have misinterpreted a few things that Dr. Landgren said during the interview. In fact, I probably shouldn’t even go ahead and publish this post right now (Stefano suggested two minutes ago that I stop writing and join him in the kitchen, where he’s making dinner…), but I would really like to get some feedback from you guys…What do you think?
Let me conclude by asking: whatever happened to the concept “Early treatment is a very bad idea”?????
P.S. Sorry for any repetitions…no time to go over this draft…must go help with dinner…ciao!