Myeloma patients under age 50

Well, so much for giving up research for a few days.  But last night Sherlock sent me a new “Blood” study that perked my interest. You can read the abstract here: And, as usual, I would be happy to forward the full study to anybody upon request.

A few preliminary remarks:

1. I am always wary of statistics, of which this study is full. Lots of numbers! My head was spinning at one point…

2. The study considers only myeloma patients undergoing conventional treatments.

3. Specifically: “Patients with smouldering (asymptomatic) myeloma, amyloidosis and monoclonal IgM disorders were not included.” 

That said, the study contains some interesting information. As follows.

The International Myeloma Working Group analysed 10,549 myeloma patients for this project. 17 institutions and study groups from North America, Japan and Europe participated in the study, which covers the period 1981-2002. Most of the patients were from Europe.

The authors “report the presenting features and outcome after conventional and high-dose therapy in 10,549 myeloma patients and compare the findings obtained in 1,689 patients less than 50 years of age with those of 8,860 older patients.” 70% of all the patients had participated in clinical trials (7,413 people). Stage of the disease was assessed using the International Staging System, or ISS (see:, and the Durie-Salmon system, see:

“Median age of all 10,549 patients combined was 60 years.” 1,689, or 16%, were younger than 50 years of age. Most of these were between 40 and 50. Only 312 were younger than 40, and 27 younger than 30.
Younger patients had fewer adverse prognostic factors such as low albumin and high B2M (beta-2 microglobulin). They also scored better than older patients in terms of haemoglobin, C-reactive protein and creatinine. The two groups (a. more than 50 years of age, b. less than 50) had comparable levels of LDH and bone marrow plasma cell infiltration, which indicated “an absence of a major difference in the biology of the myeloma clone between young and older patients.”
Interesting bit of information about the <40 group: most of the patients, 67%, were male. The authors speculate further on that it could be due to “increased androgenic sex hormone levels in young males.” No difference, however, between male and female patients.
Risk of death was higher in the older patients. Now, excuse me for pointing out the obvious, but had the reverse had been found, i.e. that younger patients died at a higher rate than older ones, that would have made no sense, right? So the following bit of news hardly seems to be earth-shattering: “Better outcome in the younger cohort was seen in all three ISS stages and was independent of gender.”

In particular, “High-dose chemotherapy with autologous stem cell transplantation resulted in a higher relative excess risk of death in the older patients (median survival 5.7 years) compared to the younger patients (7.5 years). Similarly, the observed 10-year survival rate was significantly higher in the younger patients (43% versus 29%, logrank P=.005). Relative survival was similar in the subgroup of patients aged 40 to <50 years versus that of very young patients, both after conventional chemotherapy (4.4 years versus 4.7 years) and after autologous transplantation (7.3 years versus 7.5 years) (relative excess risk estimate: 1.09 and 0.93, respectively). And 10-year survival rates were also similar, both after conventional (21% versus 19%, P=.37) and after high-dose treatment (44% versus 38%, P=.76, by log-rank test).”

Sorry about all these long quotes, but it’s difficult to summarize numbers!

Ah, and what have we here? Another long quote! As follows: “Conventional therapy was given to 994 (58.9%) of the 1,689 patients aged less than 50 years and to 6,771 (76.4%) of the older patients, while high-dose therapy was administered to 695 (41.1%) of the younger and to 2,089 (23.6%) of the older patients, respectively. The percentage of young patients enrolled during different time periods for treatment with conventional therapy decreased from 94.2% in the period between 1981-1987 to 21.3% in the years between 1999-2002 (P<.001) while the proportion of those subjected to high-dose therapy increased from 5.7% to 78.7% (P<.001)(Table 3). The respective figures for older patients were 98.8% to 40.1% (P<.001) for conventional, and 1.2% to 59.9% (P<.001) for high-dose therapy.”

And now we get to the final part of the study (I skipped a lot of the numbers, eh!), and, you guessed it, here is another long quote: “The most important finding in this study on 10,549 patients with multiple myeloma was the significant differences in the presenting features between young and older patients. Young patients presented with significantly lower ISS stage and consequently had less frequently elevation of ß2-microglobulin and reduction of low serum albumin levels. In addition, significantly fewer younger patients presented with poor performance status, anemia, renal impairment, or increased CRP levels. Older patients, in contrast had a greater prevalence of less favorable prognostic factors. Hence, both a lower ISS stage at diagnosis and overall better prognostic factors seem to account for the superior survival in young patients treated with high-dose therapy after correction for differences in life expectancies, with age remaining an independent risk factor for patients treated with conventional therapy.” Another finding was the low number of young patients: only 0,26% were younger than 30 years of age. Young age was associated with longer survival. 

The study concludes that “myeloma patients less than 50 years of age had significantly longer age-adjusted survival both after conventional and high-dose therapy (5.4 and 7.5 years, respectively) in relation to older patients (3.7 and 5.7 years, respectively). Given the fact that thalidomide and other new drugs were not available for the great majority of patients, the 10-year survival rate was remarkably high in young patients after conventional (19%) and high-dose therapy (43%). The major factors accounting for this improved outcome of young patients were presentation with a lower ISS stage at diagnosis and other more favorable prognostic features.”

Even though, as stated above, I am wary of statistics and take them with a grain of salt, I admit that I would really like to read a similar statistical analysis concerning those of us following alternative treatments. Perhaps some day…who knows?

Research overload?

I don’t know exactly what has been happening to me lately. In the past few days, perhaps even in the past week, I have had a hard time focusing on my usual, almost daily online research. I start looking things up but am easily distracted and, again easily!, get a case of the fidgets.

I recently “unearthed” a new plant extract that has anti-myeloma effects in vitro (eh, what else is new?)…discoveries like that usually make me spend hours online doing research. So why am I not able to concentrate on this new substance or anything else that has to do with research? This morning I finally erased about a dozen unopened Science Daily updates without even glancing quickly at them. Ehhh? What’s wrong?

Well, I may have reached the point of…research overload. That’s my conclusion. The huge amount of information, web links, e-mails and whatnot that I receive every day may finally have…saturated my brain.

As you may have noticed from my shorter posts these days, I have pulled back a bit from my daily blogging routine. This doesn’t mean that I am abandoning my blog, eh. That will never happen. I love my blog. I check in at least twice a day to see if I have any comments (or, horror, spam messages that need to be erased). If I find a neat link, I add it to my blogroll. I never thought I would become so attached to a project like this, but well, I am hooked for good. I love reading readers’ comments. I love corresponding with you all. I (usually) enjoy doing my research. And without my blog, I never would have met Sherlock (in real life, I mean). Ah, I would indeed have missed out on A LOT.

On a brighter note: Stefano and I are in the midst of planning a late spring or early summer trip to see the puffins. Very exciting. You may recall my I-adore-puffins! post. Well, the long-awaited puffin trip is really going to happen (for those who have no idea what I am talking about: puffins are funny-looking seabirds, see for more info and photos; there are also many websites, such as Scotland’s "SOS Puffin" or Maine’s "Project Puffin," that allow you to adopt a puffin: a little money goes a long way!).

I confess, I can’t wait! If we could leave tomorrow…but of course right now the puffins are still way out in the Atlantic Ocean. We won’t be able to see them until April-May, when they come ashore to breed.

Yes, this is Puffin Year. My wish is about to be granted! 

Ask the myeloma expert

I took bits and pieces of the following from Beth’s blog. and the Institute for Myeloma and Bone Cancer Research are proud to announce the creation of “Ask the Expert,” a free online web-forum where myeloma and bone cancer specialist, Dr. James R. Berenson, offers medical answers to questions surrounding quality of life and longevity issues for patients living with this rare form of cancer. is the creation of myeloma advocate Beth Morgan and provides an online forum where patients and caregivers can learn more about multiple myeloma (or bone marrow cancer), which occurs when plasma cells, the white blood cells that normally produce infection-fighting antibodies, undergo cancerous changes and begin to proliferate in the bone marrow.

Thousands of people visit every day, myeloma and bone cancer patients, caregivers and other medical professionals who actively participate in online discussions about treatment options and personal experiences.

“Ask the Expert” is the latest addition to the website and is available at no charge by registering on the site. Visit for more information. You can also go read more about this new feature of Multiple Myeloma Support website on Beth’s blog:

A few good reasons to eat raisins

This morning I was going to write a post about a new plant extract that was found to kill myeloma cells in vitro, but then I received a peculiar Google Alert, so I am going to post about that instead: today’s edition of the Tamil Star ( reports that, contrary to popular belief ( = raisins cause cavities), raisins fight cavities and gum disease thanks to these phytochemicals: “oleanolic acid, oleanolic aldehyde, betulin, betulinic acid, and 4-(hydroxymethyl)-2-furfural.”
In particular, as we can read in this 2005 Science Daily article (, oleanolic acid inhibits “the growth of two species of oral bacteria: Streptococcus mutans, which causes cavities, and Porphyromonas gingivalis, which causes periodontal disease.”
But let me get to the real reason I mentioned raisins today. I have already posted about two of these phytochemicals: betulinic acid and oleanolic acid. In vitro, both have apoptotic effects on myeloma cells. No kidding. Please see my oleanolic acid post, written back on June 18 2007, and the one on betulinic acid, July 12 2007 post; you can also see my permanent pages on both compounds.
Obviously, I am not saying that we should eat huge amounts of raisins, which I am sure wouldn’t be good for us in other ways, but I wonder how many other foods fall into the category of “fights cancer AND cavities.” 
Besides, as far as I am concerned, another good reason to add a handful of raisins to my daily intake (which I do, now and again…) is that they also contain iron, and I am right at the low end of the normal serum iron range.
So now, please excuse me, I am off to eat a handful of raisins! 


Rob Scheider, best (?) known for his role as police chief in “Jaws,” died of complications from a staph infection on Sunday. He had multiple myeloma. You can read the NY Times story here:

I heard about his death on the one o’clock Italian news yesterday. The story provided no details, except that he had died after a “long illness.” To be exact, the translation from Italian would be “he disappeared after a long illness” (è scomparso dopo una lunga malattia). Disappeared. Long illness.

I admit, euphemisms bother me now. I hope I don’t sound morbid (!), but now, if I am told or hear that someone has cancer, I want to know what type of cancer it is. Etc. I am no longer scared of discussing cancer and death. Before my diagnosis, though, I most certainly avoided the subject.

If you ignore it, it won’t touch you, right?

Wrong. Funny how things change. After.

Cats and beer…

We spent the morning in the front and back gardens (we live in a row house) preparing for spring: pruning, weeding, cutting, raking leaves…we are sooooo exhausted right now. It’s on days like these that I wish we didn’t have a garden at all. Ouch, my back hurts! But then I look fondly at my pruned raspberry patch, my pomegranate tree, my herbs and all the flowers, mainly daffodils and crocuses, that are popping up everywhere, and change my mind. It really is pretty.

Anyway, I thought I would post these photos I took of Peekaboo last night at the dinner table. Or rather, on the dinner table!

Dinner is always a bit of a struggle, especially with this curious little one. She likes to jump up on the table and watch us while we eat. Theoretically, that would be okay (we have a very big country dining table), but she begins edging very close to the food, the way cats do, inch by inch, as if they didn’t care…then all of a sudden her nose is in your plate, or she is dipping one of her paws into your glass of water. She’s a pest, but such an adorable one…


And wouldn’t this have made a great beer ad?

(P.S. In case you were wondering, I don’t drink beer, but Stefano likes a glass with dinner, sometimes).

Report of tainted curcumin…

Yesterday I read a Google Alert concerning a recent report by Consumer Lab (“a leading provider of consumer information and independent evaluations of products that affect health and nutrition”) on some tainted curcumin brands. You can read the CNN story here:

Needless to say, I was alarmed by the mention of an incredibly high amount of lead found in a “popular” curcumin brand and by the news that some brands did not provide the amount of curcuminoids stated on the label. Yikes! In order to view the report, I subscribed to Consumer Lab for an entire year. Interesting website. I am now glad I subscribed. I will be checking out other supplements as well.

I cannot publish the curcumin report here, for obvious reasons, but I can tell you (without getting into trouble, I hope!) the following: the “popular” brand reported by Consumer Lab is no longer available. It was the NSI, or Nutraceutical Sciences Institute, Superior Turmeric Curcuma Longa Non-Irradiated (400 mg per capsule). In the beginning, I confused it with the NSI curcumin that I have taken on occasion. Luckily for me, these are two different products. Phew! (I still have quite a bit of this particular brand in my cupboard!)

Another brand that was found to contain an excess amount of lead was Solgar. Surprise.

But my biggest surprise was to see that Ageless Cures Curcumin C3 Complex contained only 49,3% of “claimed curcuminoids.” I have never bought or used this brand, but I know that other curcumin-takers take it. Another brand that did not pass the Consumer Lab test was Physician Formulas, which had a very low content of curcuminoids. And Vibrant Health did not specify the “plant part” used in its product, so it failed the test as well. Never heard of either of these.

I would like to point out that most curcumin brands, of the ones that were tested, passed the Consumer Lab test. About two-thirds. I was very disappointed, though, to see that the brand that I usually take had not been tested. Drat. Oh well…

Go easy on medicated lotions, creams, gels

I am as busy as a buzzing bee today, correcting tests and preparing classes for tomorrow (etc.), so I don’t have time to post about much of anything.

But I read something yesterday that made me realize that even seemingly harmless stuff like over-the-counter creams may be not so…harmless, after all. Thanks to Healthblogs’ new updated Health News Section, I was able to read the following article: Scary! My recommendation: when buying anything, follow Puzzola’s example (I took this photo a couple of years ago) and keep at least one eye wide open. And use that wide open eye to read the list of ingredients. 

Oops, forgot something!

As my family doctor pointed out to me this afternoon, my IgG has decreased compared to my pre-curcumin tests. And it has remained stable since then. I have been stable, therefore, for two years. That’s a rather important point!

IL-17 and medical day: stability!

Well, the answer to yesterday’s question is as follows: yes, we can. Curcumin inhibits IL-17. Figures, huh? There are three (possibly more) studies that mention the IL-17-inhibiting role of curcumin. The abstracts can be viewed here: (a 2003 study), (a 2005 study). Thanks to Sherlock, I read the full study of the third abstract, a 2004 study published in “Cellular Signaling” and titled, get this: “Interleukin-17 signal transduction pathways implicated in inducing matrix metalloproteinase-3, -13 and aggrecanase-1 genes in articular chondrocytes” (see abstract:

All these studies tell us that curcumin inhibits IL-17. Simple as that.

Haematologist appointment. Stefano and I went to see my haematologist at noon today. I asked her outright to classify me. She said that I am definitely not MGUS, no way. My IgGs are too high, and let’s not forget the 40% bone marrow biopsy result (from last year). So it’s official: I’m "smouldering," which means, among other things: "to exist in a state of suppressed activity." Heh. She examined my tests more in detail and pronounced me stable. Stable as a rock. So, all good news.

I asked her what the half-life of a myeloma cell is. She replied that it depends on a variety of factors, such as the type of myeloma and its proliferation rate. It can be calculated using cells from a BMB. She told me that a myeloma cell can live up to several months. MONTHS? Drat, now I am almost sorry I asked!

She confirmed that I am taking the correct amount of vitamin D. She also told me NOT to stop taking curcumin when I get a cold or an infection of any sort. Even though it inhibits NF-kB, she said that stopping cold turkey (odd expression, that one, when you think of it) is not a good thing. Good to know.

Let’s see. I am going down my list of questions and scribbles right now, not necessarily in order of importance. Oh, speaking of importance, this is exciting: I gave her the myeloma stem cell study (she had read the abstract, not the full study) and the DMAPT study, and she is going to find out about the DMAPT trial that should be starting soon in the UK to see if I qualify for it. She is going to contact the researchers that she knows personally. I am at a loss for words. Can’t wait to hear back from her. Gulp!

She is going to push the lab technicians to get more details on my “old” bone marrow samples, which would be fantastic. And, last but not least, she is going to try to attend the upcoming presentation in Calenzano, where I will be giving a brief speech. She is leaving for a conference in Turkey that evening, so it’s iffy. Even if she isn’t able to make it, however, she is sending five people from her lab to the presentation. Five? Fabulous.

Last but not least. For the first time, she wrote that I am stable "perhaps" due to curcumin. And that I should continue with the same treatment. (When my GP read those two sentences this afternoon, he got very excited.)

As we stood up to leave at the end of the visit, she asked me to explain why there are cases of myeloma in India, if curcumin is so effective. I answered that there are only a handful of cases compared to the Western world, and besides, I managed to add with a straight face, those folks undoubtedly didn’t use turmeric in their diet. My husband let out a snort, and she gave me a big smile and shooed us out of her office.  Hehe. I love my haematologist. Good sense of humour.

Yes, today was a good day.