Patience…

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Martin pescatore, Parco della Piana, Firenze

Both Stefano and I have found birdwatching to be a very relaxing activity. You have to be incredibly patient, though. Sometimes you get some spectacular photos as soon as you reach the birdwatching hut…sometimes, perhaps most of the time, you end up just sitting and looking outside, and you may not spot anything worth photographing. But in the end, for me the important thing is that we’re spending time together, out and about, in a lovely natural setting, doing something that we both enjoy, something that we find incredibly relaxing. The photos we take are not as important to me, although of course I’m thrilled when we end up with some great shots. This didn’t happen yesterday, as you can see… 🙂

Yesterday we went to our favorite birdwatching place, the Parco della Piana, just outside Florence. Reason: Stefano had found out that the resident kingfisher (see my Sept 24 2012 post for a nice photo taken by yours truly) was being very cooperative with the regular photographers/paparazzi who were posting stunning closeups of this gorgeous creature. Well, we wanted to try our luck, too, so off we went, armed with binoculars, cameras, tripods and heaps of enthusiasm…

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We chose the best hut…and we sat…and sat…and walked around…and sat some more…and stretched…and yawned…and finally, thanks to my fabulous new set of binoculars, we spotted a tiny blue dot with a red tummy on the other side of the lake…

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Coppia di pantane, Parco della Piana, Firenze

But I didn’t care that it was so far in the distance. I took several photos anyway. So did Stefano, but he thought his were terrible (well, hello, they’re much better than mine…Men…!). Here are a couple of mine. I know, yes, they’re terrible…and yes, they are crops…

But I even got the little guy in flight, a first for me…It’s a totally out of focus flurry business, I know, but hey, you try shooting a speck of blue flying at one million kilometers per hour! 😉

We also saw a pair of greenshanks. They’re very cute, too…And so much easier to photograph! 

TAB’s fabulous update: still smoldering after 15 years!

My blog reader TAB sent me his most recent update back in August (I KNOW I KNOW I KNOW!!!), but I was so busy with my parents and their cataract removals that I forgot to post about it! Until this morning…Sorry, dear TAB!!!!! 

Now, please note that he mentions graphs and worksheets in his update. You will have to get in touch with him directly if you want to see those (see TAB’s comment below for his email address). Okay, here goes!!! 

Current age: 72
Diagnosed 8/6/1998 with Multiple Myeloma IgA Lambda
This is an update of my report “Smoldering Myeloma – 11 Year Case Study Using Supplements, Revised Aug 6, 2009

Update: 8/8/2013

  1. I have been smoldering for 15 years.
  2. I remain asymptomatic with no C. R. A. B. symptoms, that is: No elevated Calcium, No Renal failure, No Anemia and No Bone Lesions.
  3. The latest IgA value of 2741 mg/dl is the lowest it has ever been since diagnosis in August 1998! See IgA Graph. M Spike is 2320 mg/dl (lowest ever)
  4. Hemoglobin dropped 1.7 sigma.
  5. I remain on my daily supplements of Inositol, IP6, Selenium, Vitamin C and D, Trans Resveratrol, Curcumin plus a multivitamin. I take one half of the IP6 /Inositol first thing in the morning on an empty stomach and the remaining half before bed. I take the Curcumin all at once usually with a meal that contains some fat or oil.The other supplements I spread out over the day. Supplement cost is about $1.37 per day depending on current prices. My current supplement protocol is shown on the Supplement worksheet (last worksheet). See the notes on the IgA worksheet for the changes that I made over the years in an attempt to refine the supplement protocol.
  6. I feel that the trend lines in the attached graphs show a definite correlation of improved markers with the taking of supplements. The MM has by no means been eradicated, but I have enjoyed a very homeostatic control of the markers with no symptoms thus far. These supplements may or may not work for others as they apparently do for me. I have been lucky to have had the time to see results which in some cases took years to manifest. I firmly believe that the supplements are responsible for my stable condition.
  7. I eat a typical American, somewhat well-balanced diet, but nothing special. I enjoy golfing (walking) in the summer and have a Body Mass Index at the upper end of normal.
  8. No problems to report.
  9. According to the NEJM paper by Kyle et al (Ref #6 in the Case study report), the probability of progression from MGUS to Myeloma is a constant 1% per year. For smoldering myeloma the risk of progression is greater in the early years but decreases with time. Examination of the graph of Figure 2 shows that after 14 years, the slope of the smoldering curve is identical to the slope of the MGUS curve. I interpret this to mean that my risk of progression is now 1 % per year, the same as for a MGUS patient! See NEJM Figure 2 on the next page.
  10. I am providing this information in two different formats. One is in pdf format for easy reading and printing. The other is in Microsoft Excel spreadsheet format. If you would like to use my Excel spreadsheets to help you plot your data (I highly recommend plotting one’s own data), you can just replace my dates and values with your dates and values, and the graphs should (hopefully) automatically plot for you. When I visit my doctor I show him the graphs which helps him to visualize any progress or lack thereof rather than him scanning through several pages of numbers which makes looking for trends very difficult. 

Long-term survival in myeloma is (finally) linked to a strong immune system…And my new discovery…

Many many years ago, when I first embarked upon my smoldering myeloma journey, I joined a couple of online myeloma support groups. I still belong to one of them, the smaller, friendlier one (“friendlier” to scientifically-backed, nontoxic, anti-myeloma substances such as curcumin, I mean…).

It’s in the bigger group, though, that I first witnessed something getting repeated over and over again…Namely, that myeloma folks shouldn’t do anything to boost their immune systems…This no-to-boosting-the-immune system theory was fiercely defended by some outspoken members of the group…And you know how it goes: if something gets repeated over and over (and over!), it can eventually become believable…as unbelievable as it might be… 

The theory supporters maintained that if you give a boost to the immune system, you also give a boost to your myeloma cells, since myeloma is a cancer born and bred inside the immune system. 

These patients therefore kept telling me that I was crazy to take curcumin because it boosted my immune system and, consequently, my MM cells. But that made no sense to me, in part because of my own experience with a chronic yeast infection that simply disappeared soon after I began taking curcumin (note: curcumin accomplished what heaps of antibiotics with all their side effects had not…), in part because my MM markers had improved, too. And so I ignored their warnings and kept taking curcumin…

Eight years later, it appears that I was right… 🙂

A few days ago I came across this Myeloma Beacon article about immune function: http://goo.gl/Po3DrU

Excerpt: Results from a small Australian study provide new evidence that the immune systems of myeloma patients may play an important role in why some patients survive much longer than others. In particular, the Australian researchers found that myeloma patients who live for more than 10 years after diagnosis have more robust immune function as compared to other myeloma patients.

So it seems that the MM patients who survive the longest have the strongest immune systems…

Vindication…so sweet! 🙂 And really, when you think about it, since so many MM patients are plagued by (and often succumb to, unfortunately) chronic infections and diseases, doesn’t it make more sense for them to have a strong immune system that will help their bodies fight these pathogens?

Okay, let’s get back to the article now…

It mentions two immune-boosting conventional drugs, thalidomide and pomalidomide (the latter is a derivative of thalidomide…). But let me mention something else–as I mentioned above, curcumin boosts immunity, too, as do a lot of the other nontoxic substances I’ve researched and discussed here on the blog…Some are substances that I take every day, in addition to curcumin, of course…such as Nigella sativa. 

Another interesting tidbit (scroll down to “Study results”): the researchers in the myeloma immune system study found that 100% of long-term MM survivors (long-term = 10 years or more…) possessed killer cell clones, compared to only 54% and even 48% of short-term survivors. And that is why they concluded that long-term survival may be linked to higher immune system activity against myeloma. Hah.

The Beacon article is easy to read…If, however, you feel up to checking out the source, then click here for the full study: http://goo.gl/KbvhKe

I’d now like to give you the link to a relevant post written by Dr. Brian Durie (whom I met here in Florence several years ago, btw) on immune function: http://goo.gl/nq36xM

Important excerpt: The key point for myeloma research is that inactivation of T-lymphocyte cells and natural killer cells–which should be killing myeloma cells–occurs through a mechanism called the PD-1/PD-L1 system.

He explains this PD-L1 (= programmed death – 1 ligand) process well, so I don’t need to go over it. All we really have to remember, though, is that PD-L1 is BAD news for us but GOOD news for myeloma cells. It’s therefore clear that PD-L1  needs to be inhibited. So far, though, says Dr. Durie, there is only one PD-L1 inhibitor, which is being tested right now…but it could take a while…

Well, I thought, in the meantime, why don’t I see if there are any potential, naturally-derived, nontoxic PD-L1 inhibitors out there? And so I began checking PubMed…

I’m sure you’ve already guessed that curcumin seems to be a PD-L1 inhibitor: http://goo.gl/wrbaZd Now, to be honest, I couldn’t make heads or tails of this study (reading just one paragraph gave me a headache!), but I did get one thing out of it…I think!…as follows…

Scroll down to “Results,” where you will find the following: curcumin inhibited PD-L1 by 30% (and PD-L2 by 70%…I’m not sure if PD-L2 is as important as the other one, though, for myeloma…) in these dendritic cells, which are immune cells. Well okay, 30% isn’t super impressive, truth be told, and I didn’t find any other studies connecting PD-L1 inhibition with curcumin, but I’ll keep digging…

But I do have some encouraging news. I made a new discovery! I found a nontoxic substance, extracted from a plant called Chaenomeles speciosa Nakai, which appears to be a powerful PD-L1 inhibitor and has been used for centuries in traditional Chinese medicine to treat a variety of diseases, quelle surprise (not!). See: http://goo.gl/90Ipe1 (the full study can be downloaded, too…).

More research is needed, of course, but the main thing is that this nontoxic plant extract suppresses PD-L1, while increasing immune function…

Just what we need. 🙂

Spice cats!

I’ve been thinking about giving curcumin to my cats for a long time, but I didn’t have any powder until recently. Then, while I was in the U.S. this past summer, I managed to buy some C3 Complex powder…no additives. Purrfect. And so I’ve been mixing curcumin with their wet food twice a day for the past couple of weeks now.

Here are my reasons for giving them curcumin, aside from the main, obvious one—that is, to keep them as healthy as possible for as long as possible:

_MG_0722Case no. 1. Puzzola, our eldest (12 years old), was diagnosed with hyperthyroidism last spring. Luckily, she’s at an early stage of this disease. She has lost some weight (that seems to have stopped, though), has a big appetite and is a bit restless, which are all signs of this condition. However, she doesn’t have any other symptoms, as far as I can tell: her fur is soft and silky, she’s not cranky, depressed or aggressive, and so on. 

Following our vet’s advice, we’ve been treating her with a conventional drug…a pill that she has to take twice a day. We’ve been mixing it with her wet food. No problems, luckily (= she’s the one who can smell a pulverized antibiotic even inside a mixture of the smelliest anchovies and sardines…!)…

Note: I did some research on this topic and found that curcumin has been studied in connection with hyperthyroidism (in rats)…Even though Puzzola is definitely NOT a rat, Stefano and I decided to give it a try…

_MG_0732Case no. 2. Piccolo. He’s our nine-year-old, black and white male. In spite of his name (“piccolo” means “small” in Italian…We gave him this name because he was indeed very small when we adopted him, as a result of a serious infection that almost killed him), he’s a big boy who weighs about 9 kilograms or 20 pounds and loves to wolf down not only his food but everybody else’s, too. So, over the years, in spite of our efforts to curb his appetite, he’s gotten a bit heavy. We finally gave up on diet food, deciding that it was too stressful to put him on a diet…too stressful for him AND for us…plus our open-space floor plan makes putting only one cat on a diet virtually impossible…Interestingly enough, he’s now much less obsessed with food, which means that he is eating less now that dry food is available all the time…

But let’s get to the important part of his story: last month I noticed that he wasn’t jumping onto the dining room table anymore. Now, Piccolo has always “joined” us for dinner. I mean, he has always curled up at the other end of the table in order to keep us company while we eat…

Then it struck me that he hadn’t been jumping onto the high part of the kitchen counter, either…this is where Pinga has her bowl (it’s a ledge above the counter). Piccolo loves to be up there, since it’s the highest spot in our open kitchen-dining room area = the purrfect place for a dominant kitty to keep tabs on the other cats…and to bump foreheads with me 🙂 …How had I not noticed that before???

Last but not least, Piccolo has also been having a bit of trouble hoisting himself onto our bed. He jumps just enough to get his head above the mattress, then he pulls himself up the rest of the way, digging his claws into the cover for extra help. He’s never done that before. 

So I began watching him more closely, and I noticed (horror) that he was walking a bit…funny. It looked as though he might be in a bit of pain. Arthritis? Time to intervene…

IMG_0411Case no. 3. Prezzemolo, our youngest cat (1.5 years old, I think, by now), the one who came from the cat shelter, has always been a bit sickly, unfortunately. You may remember that he had a bit of a difficult time last fall, right after we adopted him…he came to us with a variety of ailments…He’s gotten over most of them, but he still has a chronic cold thing caused by a stubborn virus. Our vet thinks he’ll have this condition for the rest of his life. It means that during the winter months in particular, even though our cats are indoor cats, this chronic condition gets worse…

Main symptom: he sneezes violently, and his…uhm, let’s see if I can find a polite way to put this…uff, no, I cannot!…and, er, his snot shoots out of his nose as violently as hot water and steam from a geyser, landing all over the place–our walls (btw, the snot dries so quickly that we usually don’t get it off in time…Result: the walls are now all speckled…Yeah, I know this is revolting…SORRY! 😉 ), the other cats, any surface such as the kitchen counter…and on us, too, if we don’t get out of the way in time. Yeah, yucky, I agree. A lot of this stuff also sticks to his face, and he licks it off. Super gross! Okay, okay, way too much information! I think you get the idea… 😉

I’ve been giving him vitamins, but so far nothing has worked. By the way, he doesn’t act like a sickly cat. On the contrary, he’s super active…adorable, playful, affectionate, happy, and so on…It’s just that he has his sneezy-snotty “moments.” We can all live with that, but it would be nice for him to have a normal life…

Okay, now, based only on my own observations (and Stefano’s), here are the results of administering curcumin to the cats in this short period:

General observations:

  • I haven’t noticed ONE single pool of vomit (hairball-caused, etc …). We usually have at least one per week. And we’ve been through periods of one per day, too. Could it be the curcumin?
  • In the pre-curcumin period, Pinga (three years old) would almost never come downstairs to have breakfast. She is also a super finicky eater: she loves tuna but little else. How many times has she walked away from her food? Too many to count. Well, that has changed. Ever since I began mixing curcumin into their wet food, she’s been the first cat downstairs in the morning. No kidding. She sits on the edge of the counter and waits impatiently for her food, tapping me on the arm and chirping if I seem too slow (hey, I feed the cats BEFORE coffeezzzzz! 😉 ). I’ve never seen anything like it. Not with her…
  • All the cats are eating their curcumin-enriched food eagerly…I’ve never seen them lick their bowls clean like that. I admit, even I am surprised.

And now, in order of appearance and age:

  • Puzzola: hard to tell if there have been any changes until she has blood tests (we’re going to meet with the vet next week). She seems absolutely fine, though, and perhaps less agitated, yes, but I can’t tell if anything else is going on with her.
  • Piccolo: he has recently begun, slowly, to jump onto the dining room table. The first time this happened, I almost wept with joy (I’d seen him try and fall so many times…broke my heart…In case you were wondering, whenever he fell, we’d pick him up and put him on the table…). He still hasn’t tried jumping onto the high counter, though; I think he’s still scared of not making it. I’ll see what I can do about that, at some point. One step at a time…
  • Prezzemolo: his is the most noticeable change. He isn’t sneezing as much! No big snot episodes/wall decorating in the past week. No kidding. This is a huuuuuge improvement. Now, would this have happened even without curcumin? I have no proof, of course, but my instinct tells me “no,” especially since I know how snotty and sneezy he was last winter (all winter!) and also in the pre-curcumin weeks, which is when the weather started getting cooler over here…

If I observe anything else, good or bad, I’ll let you know…For now, all is well! 

The experiment continues…

P.S. Interesting note: I recently found a curcumin product (for sale) for cats and dogs. Its main ingredient is C3 Complex, so I asked myself, why not use that directly? Plus, this way, I’m not giving them anything BUT the powder…no additives, that is, as I mentioned previously…

Sabinsa gets FDA no objection letter for GRAS status of its Curcumin C3 Complex…

A Google Alert just led me to this article: http://goo.gl/m0B16p That’s where I discovered that C3 Complex is now GRAS, which means “generally recognized as safe.” Basically, this means that it’s not toxic…that we can add it to what we drink and eat…

Oh phew! What a RELIEF! Holy cats! After all, I’ve been swallowing this stuff for YEARS now, and I certainly don’t want to be doing myself any harm…!!!

Okay, as you can tell, I’m joshing a bit…no harm in having a bit of fun, eh! 😉 …I mean, DUUUUH!, of course I have ALWAYS known that curcumin was (is!!!) safe, and it certainly doesn’t take a “no comment” letter from the FDA to prove that to me.  

I was curious about that “no comment” business, which sounded a bit odd to me. So I looked it up. Well, all it means is that, after reviewing a product’s GRAS claim, the FDA states that there will be no further “challenges” to the product’s GRAS status. In other words, by “not commenting,” the FDA grants the GRAS status. To be honest, I’m quite surprised that Sabinsa was able to obtain this GRAS status from the FDA in the first place! (I hope the price of C3 isn’t going to increase even more, now…yikes…)

Toward the end of the above-mentioned article, there is a mention of C3 Reduct, a new type of curcumin, also manufactured by Sabinsa, which I haven’t tried mainly because I read that THC ( = tetrahydrocurcumin = C3 Reduct) is not very effective at suppressing TNF-induced NF-kappaB activation, and it also isn’t a strong inhibitor of COX2 and cyclin D1, = myeloma cells’ best buddies. I wrote about all this more in detail in August: http://margaret.healthblogs.org/2013/08/08/the-possible-drawbacks-of-c3-reduct/ 

I know that some readers are taking the Reduct, so, if you have any results, please please please get in touch with me in some fashion (via email, Contact form, Facebook…) and let me know what you think of it. This is important, as it will also inform others about this new product, too. Thanks!!! 

I have to get back to work now. More soon, though!

Ciao! 🙂

Work and cats

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Two words that don’t go together…Trying to get some work done, with a cat (my Puzzola, 12 years old) lying in front of the computer screen and on top of the keyboard, demanding love and attention, and kneading my arm?

Impossible, as you can see… 🙂

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So, while I’m waiting for Puzzola to get tired of being petted and scratched and go off to take a nap somewhere (else!!!), here are a couple of really cute videos I watched this morning…for a smile: 

Animals (mostly cats) trying to fit into boxes etc.: http://goo.gl/WX8P3D

Cats stealing dog beds: http://goo.gl/DjJ8gt

Longest cat tongue in the world…

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I took this photo of my handsome, smart, loving and lovable Piccolo (9 years old) just a couple of days ago.

I didn’t notice THAT TONGUE until this morning, though, when I downloaded my photos onto the computer…  😯

Wowsie!!! 

Don’t you think it could…or rather, SHOULD win a prize?

😉

Avoiding overdiagnosis and overtreatment

First of all, I would like to thank a dear friend for sending me the article that I’m about to discuss. Here’s the link to the abstract: http://goo.gl/0gKKsL. Unfortunately, it is not an open access article, so I decided to go ahead and list a few food-for-thought points…

Let’s jump right in. A group of expert advisers for the National Cancer Institute recently recommended that the definition of “cancer” be revised. They also suggested refining the way cancer is found and treated in order to avoid the overdiagnosis and overtreatment of non-life threatening conditions. 

One of the group’s suggestions is that the word “cancer” NOT to be used to describe smoldering/indolent/inactive or low-risk “lesions.” The word “cancer” should be used ONLY to describe conditions that are likely to progress and that should be treated…that is, only life-threatening conditions.

Aha! 

Think back to the moment when your doctor told you that you had “cancer.”

Boy, I can still remember how I felt back in 2005 when I read those two words, “multiple myeloma,” on my BMB test result: FREAK OUT! PANIC! OH NO, I’M GOING TO DIE! I thought my life was over…

At the time of my diagnosis, it was not explained to me that people with inactive myeloma can lead healthy lives and never ever progress to an active stage…I didn’t know that my risk of developing the active form of this cancer decreased every year…Right now, at year 8, I think my progression risk is about 3% a year…a big drop from that initial, whopping 10%.

Of course, by now you know what I think of statistics… 😉

(Incidentally, it occurred to me that someone might bring up the point that the expression “multiple myeloma” doesn’t contain the word “cancer.” True. But our doctors refer to it as “cancer.” And we are told that it’s cancer…a lethal cancer of the bone marrow...)

According to a member of the above-mentioned group, the danger is that people who are told they have CANCER choose to undergo treatments that may be too aggressive and premature. In other words, fear can lead us to make bad treatment decisions. And, let me add, it can lead us to participate in clinical studies that could really diminish our quality of life (see my previous post)!!!

This shouldn’t be allowed to happen. 

By the way, the article tells us that while screening for cancer has been on the rise in the past few decades, this has not corresponded to a drop in mortality rates, with a few exceptions (the removal of precancerous colon polyps, e.g.). A significant point…

Okay, so what shall we call an indolent condition…a condition that may never become life threatening? Why don’t we give it a pleasant-sounding name? Any suggestions?

Let’s see. Imagine your doctor saying, “Ah yes, you have a condition called ‘B cell burp’…No big deal…Check out Margaret’s Corner…here’s a bottle of curcumin and here are the instructions for taking it, together with a few dietary/supplementation suggestions…and I’ll see you in six months.” 😉 

Or, since cancer is a growth of abnormal cells, we could call its inactive state something like “abcell.” 

Bcellburp and abcell don’t sound that scary, do they?

Chemo for smoldering myeloma: NOT YET!

Before I begin, I’d like to thank a blog reader (thanks! 🙂 ) for sending me the link to the article I’m bringing to your attention today. In this article, Dr. Steven Vogl, a medical oncologist based in New York City, gives us his thoughts on the Spanish study that has been administering chemo drugs to allegedly “high-risk” smoldering myeloma patients for more than three years now: http://goo.gl/tEYrsT

I’d recommend that you first read the article, then come back and read the rest of this post. It makes more sense to do it that way, methinks, so you are able to put my comments in a proper context. So, go have a read! 😉

A quick note: I would have normally preferred to publish my own considerations on the actual, full study (which I have in my possession, by the way) before publishing an article about it. You know, firsthand versus secondhand…

Yesterday, though, I realized that it’s going to take me a few days to get through the full text, which is one of those super technical, super headache nightmares. I therefore decided to go ahead and publish the link to Dr. Vogl’s critique, which is much (MUCH!) easier to follow…

Now, as many of you know, I’ve written about, referred to and raged against, this Spanish SMM study many times on my blog (for a refresher, just do a search of my blog for “PETHEMA” or “Spanish study”…the “search” box is on the right of this page…Easy peasy.).

Indeed, I’ve always been absolutely appalled that this study, carried out by a group of researchers called PETHEMA, has been allowed to continue in view of the following points (and this is only a partial list):

  1. About half of the researchers involved are closely tied to the big pharmaceutical company known as Celgene, which makes one of the drugs used in the study.
  2. The experts themselves cannot agree on how to define “high-risk” SMM, as I pointed out in a relatively recent post (for details, see my Nov 22 2010 post).
  3. Where’s the data on these smoldering patients’ quality of life or QOL??? (Nowhere!, as confirmed by Dr. Vogl. And in fact, I just checked the full study, and yes the PETHEMA authors openly declare that they did not measure quality of life in their study…Oh sure, who cares about a patient’s QOL? My blood is now dangerously close to the boiling point…grrrrr.)

Okay, now for Dr. Vogl’s article. He begins by asking a very good question: “At what point do physicians decide that a condition in asymptomatic patients is life-threatening and deserves treatment as a cancer?” Ah, the million dollar question…

In “Background,” he brings up a 2007 Mayo Clinic study suggesting that almost half of all smoldering myeloma patients are at high risk for progression. Yikes. (By the way, that is what the PETHEMA group also sustains in the full text…)

In the “PETHEMA study results” paragraph, Dr. Vogl writes, “That ultimate death is allegedly delayed by treatment initiated before the emergence of any CRAB abnormality that traditionally defines the need for treatment in myeloma is big news indeed.” Later on we will see that this result is actually not “big news” at all.

Don’t miss Table 3, by the way. Illuminating.  

And then, how extraordinary!, Dr. Vogl compares the PETHEMA study to a Eugene O’Neill play where nothing much actually happens on stage (in “What is wrong with the paper?”), adding that it is potentially “misleading.” Hey, I didn’t say that…Dr. Vogl did! 😉

To him, “phenotypically aberrant plasma cells” simply means that the cells looked “strange” under the microscope. These “aberrant” cells were found thanks to a test, “a four-antibody flow cytometry test,” that was developed in Spain and is not widely available. Now, I don’t know about you, but my impression is that Dr. Vogl sounds a bit distrustful here…but hey, it’s only an impression…

Then we get to the paragraph titled “End point of ‘symptomatic disease’ has little to do with symptoms!” Read it carefully…and reread it, if necessary, as I did. Here we can find some important information: “three of the four “CRAB” criteria are laboratory-based (hypercalcemia, elevated serum creatinine and anemia), and often produce no symptoms if mild.” Food for thought. 

Another excerpt: “The paper would be more convincing if all, or even a majority, of the worsening “observation” patients had bone pain or fracture at progression. I suspect only a minority had pain. This matters because deferral of pain is almost always a very good thing, but deferral of mild anemia may, by itself, mean very little. “Deferral of mild anemia may mean very little”? More food for thought.

Then he adds that Dr. San Miguel thinks this is a confusing quibble (personal communication). Apparently, international myeloma committees term any myeloma meeting the “CRAB” criteria “symptomatic,” even if the patient has no symptoms. Perhaps international myeloma committees should defer to the English language and call myeloma needing therapy “real,” or “serious,” or “overt,” or “threatening.

Dr. Vogl is spot on, in my opinion. If you have no symptoms, how can you be classified as “symptomatic”? Definitions should be precise…So, good point!

In the paragraph “Survival analysis etc.,” Dr. Vogl is surprised at how poorly the untreated patients did in the Spanish study. But then he notes that the survival, after a period of three years, of the “control” (= untreated) patients is similar to that of the myeloma patients in Dr. Vincent Rajkumar’s study with lenalidomide and dexamethasone: 80%. So what seems to be surprising is actually…not surprising at all. 

And he adds: “As Dr. Mateos and her colleagues point out, there is no consensus on exactly how to decide which patients with SMM are “high risk.” It does make sense that patients with “high-risk” SMM—especially when the high risk is based on cytogenetic abnormalities—should develop “high-risk” overt myeloma when “CRAB” criteria are met. If this is correct, then it is not so surprising that the early death rate for the “high-risk” SMM patients on observation is so poor, since they presumably go on at a high rate to develop rapidly progressive overt myelomas that are resistant to treatment.”

So the seemingly high-ish death rate in the “observation” (untreated) group fits in with what we would expect. 

Please read carefully what he says about the survival difference between the two PETHEMA smoldering myeloma groups, treated and untreated. For example, three of the deaths were related to complications from the treatment…and one other death was “sudden.”  I can’t help thinking: would those folks be alive today had they not been in that study?

He also notes that “the survival difference depends on a small number of events” (here he is referring to the survival difference between the two groups). Don’t you think, as I do, that he sounds dismissive, here?

And at the end of Table 4 he writes: “If therapy for overt myeloma continues to improve, the benefits from asymptomatic smoldering myeloma therapy may disappear.” Now, here he seems to be on the verge of saying (again, in my opinion!) that it’s NOT a good idea to treat smoldering patients…at least based on the information and study results currently in our possession.

Well, this is exactly my position, based on years of reading studies showing that there are no benefits whatsoever to administering early treatment to smolderers with no CRAB symptoms (and even then, one must exercise caution). On the contrary, as we well know, early treatment can have an incredibly negative impact on a patient’s quality of life..

Quality of life. That’s a huge issue with me. I mean, what would be the point of prolonging my life (in studies, this is referred to as OS = overall survival) if I’m going to suffer from the consequences of toxic treatments? I’d much rather have a shorter but healthier life. Oh sure, I’m speaking from a privileged position, in the sense that I don’t have any CRAB symptoms, and I can do anything that healthy folks can do…even though I’d almost certainly be considered “high risk” both by the Mayo Clinic and PETHEMA classification systems…and even though, based on statistics, I should have progressed to symptomatic myeloma at least three years ago…

Speaking of quality of life, check out the subsequent paragraph on Tolerability and Toxicity. Excerpt: “Quality of life should be totally intact while the disease smolders—essentially by definition—so it will take a lot of really good-quality days later to make up for any of those sacrificed to a toxic therapy for SMM.” Indeed.

For me, the fact that QOL was not measured in this study (or in most if not all studies, come to think of it!) invalidates the study results. I’m not interested in “overall survival” if that survival means that I can’t go to Skokholm and see my puffins anymore. I’m not saying that is the case with these SMM patients…Fact is, we simply don’t know how any of them are doing (I hope, of course, that they are all doing incredibly well…). What we DO know is that some patients in the “treatment” group had to leave the study due to strong adverse effects. And a few died of complications from the treatment, as mentioned above…

Okay, let’s wrap this up. One of the most important aspects of this article is that here we have a medical oncologist (not just someone with a Ph.D. in Romance Langs and Lits, that is…yes, yours truly) bringing up some of the issues that I’ve brought up in many blog posts. And when a medical oncologist begins questioning the methods used in, and the results of, a study, it’s time to pay attention… 

Incidentally, I was all caught up in Dr. Vogl’s critical commentary until I reached the end of the article, which threw me for a loop. Boom! Suddenly Dr. Vogl writes that there should be MORE of these “early intervention” smoldering trials…BIGGER ones, in fact. 

Whaaaat???

That makes no sense! I mean, it’s like first proving that someone has committed a terrible, brutal crime, and then commenting: “oh well, what he did isn’t so bad after all.”  😯

I shared my perplexities with my blog reader, and he agreed that the final paragraph seems to jar with all of Dr. Vogl’s previous points. According to my blog reader, perhaps Dr. Vogl felt that, after such a strong critique, he needed to soften the blow for his Spanish colleagues, so to speak. Ahhhh, who knows…But I’d be curious to know if any of you noticed that, too…?

My final point is: we don’t need any more of these blasted, toxic SMM trials. Based on current information, we know that there is absolutely no rationale for early treatment…Case closed. 

What we (MGUS and SMM folks) instead need is to focus on the NON-TOXIC things that have been blatantly ignored and even pooh-poohed until very recently (well, for the most part, they are STILL being ignored/pooh-poohed!), such as diet and scientifically-backed supplementation…and even innocuous things such as having a positive attitude…

At the time of a MGUS or SMM diagnosis, we need more from our doctors. Much more. We need more positivity. We need to be told, “you could try this, you could try that…It may not work, but why not try it? It’s non-toxic, so it can’t hurt you, but it might really help…”

That’s what we really need…

Easy peasy sore throat remedy

No, I don’t have a sore throat. But a sore throat was one of the main symptoms of the illness I had in early September (see my Sept 18 “Feverzzz!” post). Then, at some point during my convalescence, I started getting a sore throat again (what happened is that one day I did too much, too soon…dumb me!).

Well, as it turns out, I managed to come up with a super easy, tasty and effective remedy. I took it for four days, as soon as I had the first symptom, which included difficulty swallowing.

Without further ado, here’s what I did: 

I mixed about a half a spoonful of good (read: expensive!) Manuka honey from New Zealand with about a 1/4 teaspoon of C3 Complex curcumin. 

I kept small “sips” of this mixture in my mouth and under my tongue for as long as possible, so that they would slowly trickle down my poor swollen, inflamed throat…

I took this “potion” twice a day, first thing in the morning and before going to bed. And after only two days my throat was as good as new. No, I kid you not! Oh, by the way, I kept taking it for two more days, just in case…Four days in all…

_MG_0522

Anyway, I thought I would share my experience with you…I mean, all you need is to keep a jar of good Manuka honey and some good curcumin powder in your pantry at all times. Easy peasy! 

By the way, quelle coincidence!, a friend sent me the link to this abstract demonstrating the strong antibacterial activity of curcumin against a bunch of real nasties, such as MRSA, E. coli, K. Pneumoniae, etc. Check it out here: http://goo.gl/lXPL0i Impressive, huh? 

Special thanks to my kitty, Pinga, who really helped me write this post, as you can see (yes, she’s looking right at the screen in this photo…helping me edit my post, of course!)… 😉