Oh I just love open access articles, which are studies that are available FOR FREE to anyone who wishes to read them online. And this particular one (whose title coincides with the title of today’s post) falls into that lovely category… 🙂

I’d first like to mention that lenalidomide, perhaps more familiarly known by its brand name = Revlimid, is currently under an FDA safety review because it may increase a patient’s risk of developing a secondary cancer, such as acute myelogenous leukemia. If you haven’t heard about this and are interested in knowing more, have a look at this FDA link (in particular, check out the “Data summary” part): http://goo.gl/S5LAS

But the lenalidomide safety review isn’t the point of today’s post, which is instead to let you know about the above-mentioned, recently published study: http://goo.gl/8CQye To download the full text onto your desktop, simply click on “PDF” (where it says “Full Text”). Easy peasy.

The abstract reminds us how other studies have shown that curcumin helps bortezomib (Velcade) and thalidomide slaughter myeloma cells in part by making them more sensitive to the toxic effect of these two drugs. And, in this particular study, curcumin was shown to do the same thing when tested alone AND also together with Revlimid. In fact, when used together, curcumin and Revlimid killed TWICE as many MM cells as when tested as single agents. 

Well well well…Here’s something NEW: according to this study, curcumin inhibits the cereblon gene. And inhibition of the cereblon gene enables Revlimid to kill myeloma cells. So now we have the name of a new myeloma target for curcumin–the cereblon gene!

How about that…!!! 

Another interesting excerpt: As single agents, both curcumin and lenalidomide reduced the expression of both MDR1 and MRP. A combination of both agents resulted in enhanced reduction of MRP expression. This observation has not been previously reported. *

* Explanation: MRP is the acronym for “multidrug resistance-associated protein,” and MDR1 means ”multidrug resistance gene.” As I understand it, when we have high levels of these pesky MRPs and MDRs, it means that our myeloma cells have become resistant to conventional treatments. 🙁

But check this out: Exposure of H929 cells to curcumin alone resulted in a greater reduction in MDR1 compared to lenalidomide alone or a combination of both agents. Uhm…curcumin by itself is stronger than Revlimid??? Amazing! That could be due to the fact that the myeloma cells used in this study, which have a t(4; 14) translocation, are only partially responsive to Revlimid. Or, as the study authors suggest, it could be due to the fact that lenalidomide is “not a P-gp inhibitor in vitro or in vivo,” which means that Revlimid/lenalidomide doesn’t inhibit the multidrug resistant gene (P-gp = the above-mentioned MDR1 gene).

And this brings me to my question of the day (of the year…of the century…of the…etc.):

What is it going to take for us to invest more in curcumin’s anti-myeloma and chemoresistance properties? WHAT IS IT BLOODY GOING TO TAKE???

Let’s try to look at this situation in a rational manner. As I wrote in my previous post, the only way things are GOING TO CHANGE is if we take matters into our own hands to some extent…This means that we must arm ourselves with determination, persistence, solid research (PubMed, e.g.) and quite a bit of pigheadedness and patience. And if our doctors tell us to sit back and simply “watch and wait,” we mustn’t listen. It’s annoying that this same expression is still used in many of the MGUS and SMM studies…

“Watch and wait” is a thing of the past.  It simply doesn’t work…At least for most of us, I’d say.

Whatever our stage (MGUS and SMM in particular), we can be proactive: take scientifically-backed supplements, eat anti-myeloma veggies and herbs and so on….get rid of the stress in our lives (as much as possible anyway!)…laugh laugh laugh, every day (also a way to reduce stress)…meditate (ditto)…take time off to do something fun…bird watching, playing cards with good friends…whatever makes us happy. There are so many things that we can do to improve our quality of life. Like Dr. David Servan-Schreiber, I strongly believe we need to feel that we are doing something. Doing nothing, or being told to do nothing!!!, is very stressful, and it’s time for our doctors to realize that…

And hey, if all this doesn’t work in the end, well…at least we tried.

No regrets. 

Case in point. Last fall, my fabulous and much beloved Dad had radiation therapy to zap a malignant nodule that had developed on one of his vocal cords. Weeks before the treatment began AND then throughout the entire treatment period, he increased his usual 3-gram curcumin intake to 6 grams a day. And he also took a daily spoonful of Manuka honey, in addition to his regular supplements (vitamins and so on).

Well, he experienced just two side effects: 1. fatigue; 2. the skin on his throat turned bright red. Once the treatment ended, his throat’s skin color went slowly back to normal, and he wasn’t as tired, either.

But he didn’t develop mucositis or any of the other common side effects of radiation in that area…such as throat inflammation, painful or difficult swallowing, nausea, dry mouth, alterations in taste…etc. etc. etc.

There is more. At Dad’s first post-radiation checkup, the oncologist was reaaaaaally surprised to find that his vocal cord looked as good as new. The spot where the nodule had been had healed completely…no sign of even the smallest scar. Another thing: while Dad’s voice went down to a whisper (he never really lost it completely, as I recall), it soon came back loud and strong (he still loves to tease us by quoting from the British TV series “Downton Abbey”: “Hello, this is Carson, the butler. To whom am I speaking?” with his beautiful deep new voice).

Of course, each case is different…and we should pay attention to what our doctors recommend. But our doctors frequently (always?) don’t have time to keep up with the research, and that’s something we should keep in mind. Furthermore, many, probably most, of them aren’t even remotely interested in, or don’t believe in, things like diet or supplements (etc.). 

And that’s where we come in…the well-informed patients. We need to share our research and speak up! 

As I’ve written over and over again, it’s OUR lives at stake here…not theirs.

It’s THE question we’ve all asked ourselves and our doctors at some point in this “journey,” I’m sure. But let’s start at the beginning…

Sheila Dillon, BBC Radio 4’s Food Programme Presenter, was diagnosed with multiple myeloma in 2011. She had chemo etc. And yesterday the BBC published an article she wrote about cancer and diet, which I thought was absolutely spot on: http://goo.gl/jmJwK.

Ms. Dillon makes some excellent points…points that most certainly we have all wondered about at one time or another, as I said earlier. Namely, why do our doctors dismiss diet and possible dietary changes right off the bat? Why do they roll their eyes when we mention curcumin and other scientifically-backed, myeloma-killing, natural extracts? And why oh why (!) are myeloma patients undergoing chemo offered absolute crap food such as, and I quote from the above-mentioned article, “a white bread sandwich, a fizzy drink, and a chocolate bar or packet of biscuits.” You’ve got to be kidding me…

It’s maddening. Absolutely maddening. 

Ms. Dillon also mentions curcumin (and other things, such as resveratrol). By the way, when you read “turmeric” in this article, think: “curcumin.” I really wish these two words were NOT used interchangeably, but it happens a lot, even though there’s a HUGE difference between the two: one is the spice (turmeric), the other is its active ingredient (curcumin).

And what we myeloma folks need is CURCUMIN, NOT TURMERIC.

Curcumin is the stuff that’s been tested on myeloma, in vitro and in vivo, including human clinical trials. Okay, ’nuff said. Let’s keep going…

Here’s an important excerpt from the article: “Our research confirmed that in most cancer centres in the UK, diet is still seen as almost meaningless in cancer treatment and aftercare. 

Yet there is good science available on the subject, though not a lot of it is what medics call “gold standard” science. 

There are almost no double-blinded, large scale, studies done on people because they are expensive, very hard to do and there is no financial incentive.

Who would make serious profit out of the discovery that mushrooms kill cancer cells?”

Precisely…PRECISELY!!!

But the picture isn’t totally bleak: we, the patients, can CHANGE things (the status quo, that is). How? By telling our doctors about our research, our diet, the supplements we may be taking, etc. When I first began taking curcumin, more than seven years ago, very few people knew what it was. When I mentioned the word “curcumin,” all I’d get would be blank stares. But now, even our myeloma specialists know of its existence (case in point: a couple of years ago, at a patient-doctor meeting here in Florence, I spoke with Dr. Morie Gertz, of the Mayo Clinic, about curcumin, and he told me that several of his patients take it). They may still roll their eyes and say it won’t help, but hey, they know about it. That’s a big improvement…and I don’t get as many “eye rolls” as I used to! 😉 . So my final point is: things CAN change…but only if WE change ’em…and change we must, for our own health!!!

P.S. Another really good article that I read yesterday was titled “How doctors die”: http://goo.gl/CIuc5 In a nutshell, the article explains why doctors don’t die like the rest of us. Illuminating…A must-read for everyone…Highly recommended! 

(Too bad there was no mention of diet, food, supplements, etc., but I suppose I’m asking for too much…!)

Yesterday I read a very interesting article on the flu vaccine (and much more): http://goo.gl/imIa3

Now, as I’ve posted here before, Stefano and I had the vaccine for a number of years before deciding to stop, three winters ago. I wrote about our experience here: http://margaret.healthblogs.org/2013/03/22/my-comments-on-the-long-term-use-of-curcumin-in-two-smoldering-multiple-myeloma-patients-part-ii/ (Scroll down to Experience no. 2.)

The above-mentioned SD article is about the promotion of influenza vaccines, “one of the most visible and aggressive public health policies today,” according to an expert, Peter Doshi, a postdoctoral fellow at Johns Hopkins University School of Medicine.

Interesting excerpt: Doshi argues that the vaccine might be less beneficial and less safe than has been claimed, and the threat of influenza appears overstated. Uhm!

And here’s the clincher: But perhaps the cleverest aspect of the influenza marketing strategy surrounds the claim that “flu” and “influenza” are the same, he concludes. “All influenza is “flu,” but only one in six “flus” might be influenza. It’s no wonder so many people feel that “flu shots” don’t work: for most flus, they can’t.”

Do you have any comments, stories to tell, whatever…? I’d be curious to read ’em! 

I took part of the afternoon off yesterday. I got home from work and, after lunch, did a bit of work at my computer. Two of my closest friends were coming to pick me up at 3 pm, and then we were going to another friend’s house…

Just before 3 pm, I began to get ready…you know, the sort of last-minute silly but necessary stuff you do before going out–taking a pee, making sure the cats had enough food and water until I got home, brushing my rebellious hair and so on…

I was in my study (on the second floor, overlooking our front yard and the street) when, for some odd reason, I glanced down into the yard and spotted a big black cat sniffing my flower vases.

“Ooooh,” I thought to myself, “what a lovely kitty…why, it looks just like our Prezzemolo…”

Of course, it couldn’t be Prezzemolo.

Before I go on with the story, I should note that our cats are house cats (that is, they stay indoors all the time…We are fortunate to have a rather big house with lots of cat towers and cat entertainment areas…plenty of space for cats and cat litter boxes and cat bowls…). They are indoor cats for a bunch of reasons, as follows:

1. I’m terribly allergic to cats. No, I’m not kidding. And outdoor cats can give me bad asthma attacks. Since I began taking curcumin, though, during some periods of the year I have been able to stop taking my anti-asthma medication altogether (Ventolin, e.g.), but NOT in spring when we have some much pollen floating around. Anyway, it’s not that bad, really…Let’s call it a minor nuisance compared to the infinite joy that our cats give to me (and to Stefano, too, of course). 
2. There have been cases of feline leukemia in this area. We don’t want our cats to be exposed. 
3. Indoor cats live longer, healthier, happier lives (according to vets, not to me). 
4. There are minor reasons, too: we don’t want our cats killing birds or lizards; we don’t want them to “disappear” for a couple of days or more (gasp!), as happens with many cats in our neighborhood who just wander off without bothering to leave reassuring notes for their owners… 😉 Etc. 

Back to my story.

Okay, I repeated to myself, it couldn’t be Prezzemolo. No way.

But then I took a closer look, and it really looked just like him.

I had to make sure.

I scooted downstairs faster than Usain Bolt (= fastest man in the world). 

And, about halfway down, I saw it…Our front door. WIDE OPEN. And, just beyond, some of our cats…outside in the front yard. What happened next is a bit of a blur…

Now, the cats have gotten outside before. But this time, I just couldn’t find an explanation. I mean, I’d been home for a couple of hours by then, so why hadn’t the door blown open earlier if I hadn’t shut it properly, that is (it has to click, you see…but if I’m bringing bags of food inside, as I had today, sometimes I don’t pay attention to the “click”)? Very odd.

So this is what I think happened: Peekaboo (see photo), who is now six years old, is incredibly good at opening doors. If it’s a bedroom or unlocked bathroom door, she aims for the handle (she must have been a very successful burglar in a previous life). And yes, she HAS managed to open our heavy front door before, provided it isn’t double-locked, of course. 

But that’s not the point of this story. The point, or rather, the points are:

1. I was by myself. 
2. Some of my cats were in the yard (all of them? I had no way of knowing at that point).
3. My friends were about to arrive (and one of them is even more allergic to cats than I am). 

I needed to get the cats inside as quickly as possible. But first, I stopped in the open doorway to assess the situation.

Piccolo, our ten-year-old male, was sitting right outside the front door, sniffing the air. As soon as he spotted me, he dashed right past me inside the house. Ah, my smart boy! The same happened with Peekaboo who was in the yard sniffing flowers. Phooooosh, she ran past me into the kitchen. 

By the way, I swear I haven’t trained them to do that! Honest. 

Okay, two cats inside. Only four (?) to go.

I was most worried about Prezzemolo, our youngest (photo 2). He’s never been outside our house (unlike the others), and he’s incredibly curious, so if he’d ambled through the gate…oh shudder, I don’t even want to think about it…Luckily we don’t live on a busy street but on a rather peaceful side street. 

At this point, Prezzemolo was about halfway down the path leading to our front gate, going slowly and sniffing my flower vases…But as soon as he noticed Piccolo and Peekaboo running, he got a bit flustered and didn’t know what to do. He turned and ran towards me, then veered off to the left at the last second, heading for the low wall separating our house from our neighbor’s house. So I called out, “Prezzemolo!” At the sound of my voice, he stopped in his tracks, looked back at me and then turned around and ran past me, straight into the house. Yaaay!

I didn’t see any other cats out there, so I went inside and shut the door. Click! 

I needed to make sure no one else had gotten outside, so I checked the entire house. Pinga was still taking her usual afternoon nap on our bed, under the covers…and Priscilla was sleeping on her hammock on the big cat tower up in the attic. Phew.

But where was Puzzola? I called her name but no, no response. She’s our eldest, the one with hyperthyroidism who needs her medication every day. Bloody hell. 

I ran back downstairs, flung open the front door and was just about to yell “Puzzolaaaaaaaa!!!” when I saw her charging towards me at full speed (hey, not bad at all for a 12-year-old kitty!). She zoomed past me into the house. I think she’d really panicked when she saw me shut the door a minute earlier…

All cats inside. Relief!!! 

By the way, it sounds as though this ordeal took hours…but it was actually over in just a few minutes. My friends drove up moments after Puzzola had come inside, and we all had a good laugh about it. And left on our “mission.” 🙂

My conclusion: our cats must know that they have a really good life with us. The only times they’ve been outside, they’ve been attacked and terrified by other cats (cats with an attitude, cats who live outside…the poor dears don’t have an easy life, based on what I have observed going on out there…cat fights, infections, etc.). Of course my cats, like all cats, are curious and will go outside if the door is left open, but they stay in the yard and don’t wander off. And yet it would be very easy for them to cross the street and get into the fields beyond. 

Anyway, it seems to me that, given the choice, they’d rather be with us than on their own, out in that big, scary, cat-fighting, cat-screeching world…

And hey, that’s just FINE with me!!! 🙂

I’ve been neglecting my work lately, so I have a lot of catching up to do today, YIKES. But in the past week or so I have come across some articles, videos and whatnot, which I think you will find interesting. So, without further ado, here is my list. I have added a brief introduction for each item, so if you’re not interested in the topic you can just skip to the next one. 

This is an extraordinary video showing an extraordinary encounter with extraordinary wild gorillas, which a dear blog reader/friend sent to me, thanks! I was glued to my chair, totally mesmerized: http://goo.gl/nU0O5 Wow. 

Here is an easy-to-understand Science Daily article on proteasomes (finally, a super simple explanation on what proteasomes are!) and their importance in multiple myeloma: http://goo.gl/hZS2u The article also mentions a new proteasome inhibitor that has a different mechanism of action from that of bortezomib (Velcade). Uhm, let’s not forget that curcumin is a proteasome inhibitor, too. Yep. 

Those of you who have been reading my blog since the beginning may recall a substance derived from the cotton plant called gossypol, and how it inhibits a protein called Bcl-2, which is important for the survival of myeloma cells. Gossypol is a bit on the toxic side, but researchers were working on a less toxic analogue (I have to confess, however, that I haven’t been following this story…). At any rate, a new study shows that gossypol, in combination with another Bcl-2/Bcl-x inhibitor called navitoclax, might turn out to be a good treatment for CLL (chronic lymphocytic leukemia): http://goo.gl/32rYh I just checked the Clinical Trials website and, yes, gossypol has indeed been tested in at least ten trials. Well, well. I should keep better track of things (but hey, I’d need a 96-hour day for that! 😉 ). Incidentally, curcumin also inhibits the Bcl gang…

Here’s something of a less serious nature that I thought I’d add to the list…It’s an adorable kitten video that should make you say “awwww!!!” out loud and put a big smile on your face even if you don’t like kittens (impossible!): http://goo.gl/gH6tZ  🙂 

This Science Daily article provides a summary of a new study looking at the effect of various forms of relaxation (meditation, yoga, etc.) on our immune system, our energy system, etc.: http://goo.gl/D6Zof Here’s a very important excerpt: Pathways controlled by activation of a protein called NF-?B — known to have a prominent role in inflammation, stress, trauma and cancer — were suppressed after relaxation response elicitation. Wowsie!!! If you skip to the end of the article, you will also find an important reference to (precursors of) multiple myeloma and a new study at Dana Farber. Very interesting. I must look into it more carefully when I have more time…ahhhh, time…

Well, at any rate, Relax & Unwind is going to be my new motto…

But I can’t relax and unwind just yet. I need to get back to workzzzzzzzzzzzzz… 😉 So, ciaooooo!!!

Three towns in one day. 

And these weren’t easy-to-visit towns all located on flat ground, but Medieval towns perched on the tops of hills, which meant we went up and down hills, up and down hills, up and (oh, I already mentioned that!)…all day, pant pant…pant!!! 😉

Yesterday, you see, we drove our two friends–the ones who are visiting from Cape Cod, U.S.A.–into the stunning countryside south of Florence…specifically, to Monteriggioni (a circular Medieval walled town built by the inhabitants of Siena in 1213), Siena (does Siena need an introduction? I don’t think so!), and finally San Gimignano (ditto!). 

We had such a great time…and it was a glorious day, too (it rained today, so we really lucked out!).

And, speaking of luck, yesterday’s day trip made me realize how lucky I am to live so close to all these gorgeous places…

As usual, I took a lot of photos…

I’ve selected just a few (from each town), which I hope you will enjoy.

By the way, if you want to read a brief description of each photo, just hover with your mouse over the image and, yes, a brief description will, or should!, appear… 🙂

Ciao!

 

 

 

 

 

 

I’m working this morning, but I did take a break to check out a few things, including this Science Daily article on probiotics used as a “weapon to fight cancer.” It deals specifically with myeloma, leukemia and lymphoma patients who have had allogeneic bone marrow transplants and graft-versus-host-disease. So I thought I’d post the link before getting back to work: http://goo.gl/H8Xmt

Interesting, huh?

Well, it’s not really surprising, considering that something like 80% of our immune system is located in our gut, which gives us a super good reason to keep everything healthy and happy down there, even if we are “only” MGUS or SMM…Hmmm, in fact, before getting back to work, I’m going to go take some probiotics…off I go…

Ciaoooo! 🙂

Oh, almost forgot. I also came across this article, which deals specifically with myeloma and is titled: “Possible treatment for serious blood cancer.” That “serious blood cancer” is myeloma, of course. Here is the link: http://goo.gl/MOU6V Will have to keep an eye on this one…

And finally, a quick P.S.: we had a very good Tuscan meal last night (starting out with crostini and bruschetta…and ending with a delightful crema al mascarpone, mmmmh), great views of Firenze right from our table, lots of laughs with our friends, good wine, excellent service…The restaurant owner even gave me a red rose, which was such a lovely touch…All in all, a very successful anniversary celebration! 🙂

Stefano and I got married on May 8, 1999, which means that today is our 14th wedding anniversary. 🙂

We lived together for a couple of years before getting married, but it soon became difficult for me to remain in Italy…legally, I mean. I needed to find a more permanent sort of job, and I certainly couldn’t do that on a tourist visa. So we decided to tie the knot. Now I have a permanent resident visa, which gives me almost all the rights that an Italian citizen has (free healthcare, the right to work anywhere, etc.)…except the right to vote, which I don’t really want, anyway, truth be told! 😉

That same year, 1999, I discovered I had MGUS. I found out by chance, as is often the case. What happened is that we’d decided to try to get pregnant, so my family doctor, who is very scrupulous, had me take a whole series of pre-pregnancy tests, which included a serum protein electrophoresis test. When my doctor looked at my results (at the time, I didn’t know beans about anything, including beans!) and mentioned the word “mieloma,” I thought he had said “melanoma.” I’d never heard of “multiple myeloma” before. I’m sure that’s what happened to most of us when we were first diagnosed…

14 years have passed since then…In the end, Stefano and I decided not to have kids (we thought that I wouldn’t live very long, that it would be too risky for me, possibly for the child as well, blablabla…)…and, well, we now have six adorable cats that we love more than anything else…The one in the photo is our youngest, Prezzemolo, who has a chronic viral (=stuffy nose, mainly) condition, poor sweet, but is otherwise a very active, healthy kitty. When you call him, he comes running, like a little dog…tail straight up in the air and an eager look on his handsome face. He’s always ready to play or be petted. Sooooo cute!!!

This evening we’re going to celebrate our anniversary with a couple of good friends who are visiting from Cape Cod, one of whom has never been to Italy. For that reason, I chose a restaurant that not only has yummy Tuscan food, but is also located on the side of a hill with amazing views of my beautiful city, right from our table…It should be fabulous!!!

Happy Anniversary/Buon Anniversario, amore mio!!! 

Here are some of my photos. 

If you hover (the mouse pointer) over the image, you will be able to read some info about it…where it was taken, etc. 

Enjoy!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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: 

Hi there,
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!