This morning the first part of a blog reader’s message made me laugh out loud:
Hi Margaret, When I first read the “early treatment” piece in the “Myeloma Beacon,” I said to my wife: “This will not sit well with Margaret.” I was right, and want to thank you for your righteous rage.
The message continues, but that’s the part that made me laugh. And so now it’s my turn to thank you (you know who you are!) for helping me start my day on a cheery note. 🙂
Today Stefano and I went birdwatching. Or rather, that is what we were hoping to do…but, as it turned out, there weren’t very many birds at the WWF’s Oasi di Gabbianello (near Barberino di Mugello, for those who know Tuscany a bit)…just a bunch of shivering coots huddled together on the ice (see below)…
But when we reached our favorite birdwatching hut, the first thing I set my eyes on was a group of five big wild boars crossing the pond, which is at an all-time low since it hasn’t rained in ages. Wowers!
I asked Stefano what we should do if, while walking around the pond, we had a closer encounter with those boars: fall to the ground & pretend to be dead, scamper away as fast as possible, scream like banshees or…or what? He had no idea. Great.
So I just hoped that they wouldn’t mind our being there and taking photos. Luckily, they didn’t!
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.
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!
My Puzzola, = 11 years old, patiently waiting, with folded paws, for my blood test results… 🙂
Yes, I had blood tests done this morning…The nurse had a hard time poking the needle into my vein and ended up stabbing me a bit…ugh, I hate it when that happens…
Anyway, I’ll have my results at some point next month (the vitamin D test takes forever).
Oh, here’s something that intrigued me: my blood seemed redder and not as dark compared to previous tests. It also seemed more fluid. Is that good or bad or does it mean nothing? No idea. Whatever.
We’ll find out in February…In the meantime, I’ll be outside, planting bulbs in our back yard. 😉
Today started out badly when I discovered that we didn’t have Internet access. I called our Internet provider immediately, only to be told that our area was experiencing a huge and very complicated cable problem of some sort, that technicians were already out working on it but that it might take 24 hours. From his tone of voice, it sounded as though all the Internet cables in Florence had been cut or burned or eaten by rodents or vampires…
Gasp.
24 HOURS WITHOUT INTERNET…WITHOUT ACCESS TO MY BLOG? NOOOOO! 🙁 My first impulse was to go back to bed and sleep for 24 hours…
But I had other stuff to do today, lots of stuff, so in the end not having Internet access didn’t matter (and, as you can see, fixing the problem, whatever it was, hasn’t taken 24 hours, after all…).
After years of “doing it ourselves and breaking our backs,” this year Stefano and I finally hired a gardener to prune our trees and clear the summer and fall debris from both yards, the one in front and the bigger one in back. We realized that we really needed some professional help after noticing that our magnolia tree had grown taller than our house. Uhm. Yes. It needed some seeeeerious pruning, which clearly Stefano couldn’t do…way too dangerous. So we began setting aside the money needed for this gardening project. We finally hired a friend of a friend of a friend, a highly recommended guy called Paolo who began working here very early this morning. Fantastic experience. In addition to doing a splendid job, he had some excellent ideas on where to position our plants and so on. Ah yes, I’m thrilled to bits!
Now, talk about coincidences. In order to climb up and prune our jack-and-the-beanstalk magnolia, Paolo had to take down our bird feeder (quick note: the birds around here haven’t yet figured out what to do with this feeder…or perhaps they don’t like the seeds we fill it with…I mean, I really want to feed them, especially now that it’s cold, but they stubbornly ignore all my efforts…sigh). Anyway, point is, Paolo made a comment about the feeder, so we started talking about birdwatching, and, lo and behold!, it turns out that he’s a volunteer at the Oasi di Focognano, = the WWF bird sanctuary where Stefano and I go now and again (we were there last Saturday, in fact). Hah! Small world…
Not only that, but this brave man is also very much involved in the national anti-poaching project, which means he frequently goes off to places like Sardinia, where at least 300,ooo songbirds are killed every year (!), to remove the (incredibly cruel and illegal) bird and animal traps etc. Dangerous stuff, eh. Ah, Paolo had stories to tell…awful stories…I won’t repeat them here. At any rate, before he left for the day, I told him that we must stay in touch. I’d like to help with the anti-poaching project, if possible…
Anyway, after he’d left, I went into the bedroom and found Piccolo (9 years old) cuddled up on our bed next to Priscilla (7 years old). The lump that Piccolo is leaning against is actually little Pinga (3 years old, I think) who likes sleeping under a cover…summer or winter…
And that’s how we know it’s cold outside…
When the cats cuddle…
P.S. I’m having blood tests tomorrow morning. I’m trying not to think about it…
That (first part) is the title of an abstract I came upon earlier this morning: http://goo.gl/wIPGR It discusses cnicin, a sesquiterpene lactone (= a chemical compound that can cause allergic, even toxic!, reactions if overdosed…but, if correctly dosed, can reduce inflammation…aha!) that is able to kill myeloma cells even in the presence of survival cytokines and the tumor microenvironment. Excellent! However, we then find out that other hematopoietic cells are also killed, which doesn’t sound that good. Until I read the full study, though, I won’t know what exactly that means…
A quick digression: cnicin is found in St. Benedict’s thistle, a thistle-like plant in the family Asteraceae (Wikipedia: http://goo.gl/afELw). It’s a weed, a noxious weed!
Back now to our abstract. The Austrian researchers also discovered a new target in myeloma treatment, Pim-2 kinase, which helps myeloma cells survive. And they also tested cnicin together with current standard or experimental therapeutics. We don’t know which therapeutics…So I must get my hands on the full study…
But, hey, the good news is that cnicin exterminated myeloma cells and that we also have a new treatment target…Food for thought…
Another interesting article I read this morning in “Cure” magazine concerns the difficulty of identifying the environmental causes of cancer: http://goo.gl/ibk2e highly recommended read.
This “Cure” magazine article is for pet lovers (who also have cancer): http://goo.gl/FLbZN
Now for a few personal notes. I’m finally going back to work tomorrow, so my long holiday is over. It’s been lovely to spend a lot of time with Stefano and my friends, but my day job is finally…calling! 🙂
Let’s see, what else? Last night, Stefano and I finally finished watching Season Two of what has become my favorite BBC series, “Downton Abbey.” Still first-rate, although I found a couple of things a bit perplexing. Hmmm. Well, I can’t mention them now, since Season Two has only just begun showing on U.S. television, and I don’t want to give anything away!
And now the wait begins for Season Three! (Autumn 2012)
Another titbit: I FINALLY, fingers crossed!, seem to have shaken or smothered the nasty virus that gave me a terrrrrrrible cough back in September…a cough that would go away for a while, then pop back up again, then go away and so on. This was the reason why I kept postponing my usual autumn blood tests, even though, apart from the occasional cough, I felt fine. And even THE cough didn’t stop me from being active…it was just an occasional nuisance, that’s all. Anyway, I’ll try to have blood tests done this week. Yes, believe me, I know I know I know…It’s about time! But I didn’t want to fret about blood tests while I was on holiday…Besides, I feel splendidly well…
Ah, that reminds me. Some readers have asked about my current protocol. Well, because of my hectic holiday schedule, which included some birdwatching, as you can see (I took these two photos, of a teal and a shoveler, at a WWF oasis just outside of Florence, on Saturday), I have been taking only fish oil, quercetin and curcumin. Nothing new, that is.
Not yet, anyway! 🙂
An important article in the January 2012 issue of “The Scientist” magazine discusses possible treatment solutions for chronic pain: http://goo.gl/7pI5V
Mystery solved: why cats don’t crave sweets but do love mushrooms: http://goo.gl/y1iVW No, nothing to do with myeloma…but I do read other stuff, too. 😉 For example, this fun thing on English pronunciation: http://goo.gl/biYAa
Last but not least, a blog reader (thanks!) brought this bit of promising news to my attention: http://goo.gl/HUa99 In a nutshell, 12 European research centers have decided to work together to find out the following: 1. why myeloma cells become resistant to treatments; 2. why 99% of the patients who bear a precursor of the myeloma cells, stay perfectly healthy while the unlucky 1% develop the disease which in most cases is still incurable, and 3. how myeloma cells interact with their environment. Click on the above link for more details. Very interesting…And doesn’t this project sound a lot like Open Access? (Remember my October-November posts on JQ1?) It does to me…
So let’s keep our fingers crossed and hope that something wonderful (and super useful!) will result from this cooperation…
Ah, how the times have changed! In January of 2006, apart from the main curcumin-myeloma studies, I found very little information about curcumin online…Just brief mentions here and there. But now it seems that every single newspaper in the world has published at least one article on the amazing, healthful and anticancer properties of curcumin AND also the benefits of cooking with spices, especially turmeric, from which curcumin is extracted. There is so much information out there now, in fact, that I just can’t keep up with it. I do try to keep a record of the most interesting articles, but I’m sure that for every single article in my collection, there are at least twenty more. This is just one of many: http://goo.gl/uLPnV
This morning, a Facebook multiple myeloma support group member posted this link to an article titled “Multiple myeloma advocacy shows the problem of ‘patient advocacy'”: http://goo.gl/m4dLu Precisely. I’ve always been horrified at the fact that our multiple myeloma organizations (check out the homepages of the MMRF and the IMF) get heaaaaaaaps of money from big pharma, and I’ve written, or, most likely, ranted about it here on the blog. However, until I’d read this article, I didn’t know HOW MUCH MONEY was being shoveled into their coffers…well, into the MMRF’s coffers, anyway. While I find this, er, knowledge a bit depressing, I’m not at all surprised. And in fact that is why I’ve never bothered contacting the above-mentioned organizations about supporting promising research on natural, non-toxic treatments that might also be helpful in an integrative treatment context. I just knew (and know) that, at best, I’d get a polite “ah yes, how interesting.” So why waste my breath/time? I’d rather do my own research and write posts (or rants 🙂 ) for my blog…
This is an interview with Prof. Aggarwal on his fabbbbbulous “Healing Spices” book, which (I just found out) has been translated into Italian, too: http://goo.gl/eKYSU Very exciting.
A fascinating and amusing (e.g., the “Olive Garden-Italian” comment, hehe) TED talk, titled “How healthy living nearly killed me,” which lasts less than 9 minutes: http://goo.gl/Cd0eK In the second part, writer A. J. Jacobs makes some really good points—for example, at one point he says: “joy is so important for your health.” I couldn’t agree more. And here is another gem (in a nutshell): don’t obsess too much about having THE healthiest diet as possible if it means neglecting your “strong social network.” Yes indeedie! (Today, in fact, I’m spending the afternoon and evening with a bunch of friends.) Let’s see, what else? Ah yes, he calls “noise” a health hazard…so true. Anyway, this video provides lots of food for thought. I highly recommend that you watch it.
A fascinating article about placebos: http://goo.gl/mrda6
A recent study on cancer-fighting broccoli: http://goo.gl/NRv57
I’m also thinking about a couple of older issues:
Okay, time to get ready to go out. Have a great rest-of-day/evening, everyone! 🙂
Stefano and I had originally planned to spend a quiet New Year’s Eve at home with the cats. Just the two of us, surrounded by good food, a bit of champagne and a bunch of new movies. We do this every year since we don’t want that cats to be scared. It can get a bit noisy here at midnight, you see, even in our quiet neighbourhood. If it were up to me, I’d ban fireworks, firecrackers and other noise-makers at all times. They’re just plain stuuuuupid (and polluting, and terrifying for the local fauna and…etc.!).
Anyway, getting back to my point, a few days ago I was at my best friend’s house being merry and playing cards with my other buddies, and we got to talking about New Year’s Eve. The “who’s doing what?” sort of talk. It turned out that my best friend was planning to spend it alone, since her husband is abroad and her daughter was going to a party in the center of Florence. Whaaat? Alone? Oh no, that just won’t do. I hadn’t even thought of inviting her to spend the Eve with us since I figured she’d be going to a big party…she’s such a gregarious type. Anyway, she happily accepted my last-minute invitation.
Then yesterday, on Facebook of all places!, I found out that DB, my blog reader/now real-life friend, was also going to be by herself. So I immediately called her to invite her over for dinner.
The four of us had a lovely dinner…in fact, we were so stuffed that we didn’t even get to dessert = my famous carrot cake (= my sister’s recipe, truth be told). No problem about that. I’m getting together with friends later on today, so it won’t go to waste, hehe.
Anyway, what a lovely surprise. We all had a great time…After dinner we watched the final episode of the Harry Potter saga…then we toasted to 2012…It was wonderful. One of my best New Year’s Eves, in fact.
My favourite New Year’s Eve message (by DB): “Winter Greetings. May you be surprised by joy.”
And that is my wish for all of you! 🙂