Stefano has a cold and all of my students have colds, fevers and coughs…so now I have a cold, too. I have been taking vitamin D, vitamin C and Sambucol, in addition to my usual curcumin etc. So far, so good…though I admit to feeling a bit sluggish…

Getting to the point of this post…We adopted our youngest kitty, Pinga, at the end of January 2010. She was more or less 4 months old at the time, so this is her first Xmas with us. Yesterday I set up and decorated our little, fake Xmas tree instead of the big, fake one. I left out our fragile ornaments…and used just the basics…There is a reason for all this caution…

We wanted to see how our terrible little Pinga would react to her first Xmas tree. We were certain that it wouldn’t survive the night, that we would find it smashed on the floor this morning. But, amazingly, it did survive. Intact.

And yesterday, while I was hanging the ornaments on the tree, Pinga showed no interest in what I was doing. She seemed totally cool about it. Well, I thought, this must mean that she isn’t a rambunctious, mischievous kitten anymore but an adult cat with more serious and subdued interests…

Think again.

At lunchtime today I found her sitting next to the tree, leaning across and pushing aside the various obstacles/barriers that I had put in front of it…She stuck her silly little head inside the tree at one point (too bad the photo came out all blurry…), chewed on the branches (see photo) and batted at the ornaments…I took a few photos, then managed to catch the tree as it tumbled to the floor…

I am immensely relieved…Pinga is still a kitten! 🙂

About a year ago, on October 15^th 2009 to be precise, I wrote a brief post about a Phase II trial in which an extract from sea cucumbers, rather bizarre-looking creatures (see photo), was being tested on smoldering myeloma patients: http://margaret.healthblogs.org/2009/10/15/sea-cucumbers-and-smoldering-myeloma/ At the time, not much information was available…

(A quick aside: this morning, after glancing at my 2009 post, I discovered that the main sea cucumber study link now leads to a blank page instead of an abstract. Uffa. Well, that may happen from time to time with some of my outdated links, since I cannot possibly check them all… At any rate, no worries, I went to the Clinical Trial website where I found another link…)

Anyway, why am I mentioning sea cucumbers today? This morning a friend (thanks!) sent me an ASH (American Society of Hematology) 2010 meeting abstract concerning this sea cucumber extract/smoldering myeloma trial. So now we have a bit more information: http://goo.gl/SbmJ2 

The authors are wary both of chemoprevention trials for SMM folks (No kidding!!! Ma scherziamo???!!!) and what they call “bioactive food supplements”: curcumin, resveratrol and EGCG. Concerning the supplements, they say that many patients are taking them without definitive proof of efficacy or safety (my emphasis).

Now, as for “efficacy,” I actually agree with the authors, since I haven’t been taking curcumin for a long enough period to establish its efficacy in the long term, and I don’t know anyone who has been taking curcumin longer than I have. So, for now at least, we will have to set that one aside…and wait 10, 15 or more years…

As for “safety,” well, I certainly would agree that supplements taken in high doses are not safe. It boils down to common sense. Remember that study concerning a once-a-year, ridiculously high vitamin D dose? Exactly…

But curcumin is different. With curcumin, we have guidelines. Doses of up to 12 grams/day have been tested on healthy folks with minor side effects (mild nausea, diarrhea at the worst). The drawback to these types of studies is that, as far as I know, they have not lasted for more than a few months, undoubtedly because they cost not an arm and a leg but many arms and legs (and who would finance a study like that? Not big pharma, for sure!)…

So I can only offer my own case as an example: as many of you know, I have been taking 8 grams of curcumin for almost 5 years now…and, in addition to the stability of my MM markers (up a little, down a little = what I have named “the seesaw effect”…), I have experienced only positive side effects, such as protection from the very unpleasant and recurrent infections to which I used to succumb to in the pre-curcumin period…

But let’s get back to these interesting sea cucumber critters, which contain sphingolipids/glycosides that […] have also demonstrated antitumor properties including antiangiogenesis direct tumor cytotoxicity, and also of particular relevance to MM, the inhibition of osteoclastogenesis. Aha! Good stuff!

The extract being tested in this Phase II trial is called TBL 12, which has been commercially available since 1981 and used by human subjects as a food supplement without any reported toxicities. Ah. I actually didn’t know that…

Anyway, the SMM patients took two units of 20 ml of this extract twice a day, which adds up to 40+40=80 units a day. By the way, based on the Mayo classification, most of these patients (13 out of 20) were high-risk, like yours truly: serum M-spike of at least 3 g/dL and at least 10% plasma cells in their bone marrow. Anyway, you can read more details about the patients in “Results.”

An important excerpt: the treatment was well tolerated with only grade 1 nausea. Excellent…

The abstract also tells us that the best response so far has been stable disease. Not bad, not bad. I am all in favour of “stable” until something else more promising, non-toxic blablablathingy, comes along. Oh, but wait…there is more. In one case, The decrease in the rate of rise in the m-spike in a high risk patient concomitant with the initiation of study treatment is suggestive of a biologic effect of TBL12 in MM and warrants further study of TBL 12 in a larger cohort of patients. You can see his/her M-spike graph in the abstract. Well, well, well…

Sounds good to me…!!!

On a chilly winter day, if you happen to lie down in my house even just for a second and pull a blanket over your legs, a cat or two will probably climb under it with you and snuggle… 🙂

This photo shows Priscilla (5 years old) and Pinga (1 year old) and my legs (49 years old)…

 

 

This is one of the funniest YouTube videos I have ever seen…

I laughed out loud…more than once! Well, I hope you enjoy it as much as I did! Just click here: http://goo.gl/k4m1c 😀

Susie’s beloved husband, a man who always had a twinkle in his eye and a smile on his face, even during extremely painful and difficult times, died peacefully on November 23rd.

I always find it so hard to write about the death of a member of the myeloma family. Yes, a family…For there is a connection that links us all–myeloma bloggers, patient list members and blog readers–even though most of us have never met and may never meet. But when one of us is suffering, when one of us dies, we are all affected…

 And so I have kept putting off writing this post…until today.

A “Celebration of Hamada’s Life Service” is going to take place on Monday, 6 December 2010. I would have loved to attend it and meet Susie…but that is simply not possible right now…

Here is the link to Susie’s most recent poem: http://goo.gl/xfDfU

And here is my own tribute to two friends…a poem by St. Augustine (my own quick, rough translation follows):

La morte non è niente.

Sono solamente passato dall’altra parte:

è come fossi nascosto nella stanza accanto.

Io sono sempre io e tu sei sempre tu.

Quello che eravamo prima l’uno per l’altro lo siamo ancora.

Chiamami con il nome che mi hai sempre dato, che ti è familiare;

parlami nello stesso modo affettuoso che hai sempre usato.

Non cambiare tono di voce, non assumere un’aria solenne o triste.

Continua a ridere di quello che ci faceva ridere,

di quelle piccole cose che tanto ci piacevano quando eravamo insieme.

Prega, sorridi, pensami!

Il mio nome sia sempre la parola familiare di prima:

pronuncialo senza la minima traccia d’ombra o di tristezza.

La nostra vita conserva tutto il significato che ha sempre avuto:

è la stessa di prima, c’è una continuità che non si spezza.

Perché dovrei essere fuori dai tuoi pensieri e dalla tua mente, solo perché sono fuori dalla tua vista?

Non sono lontano, sono dall’altra parte, proprio dietro l’angolo.

Rassicurati, va tutto bene.

Ritroverai il mio cuore,

ne ritroverai la tenerezza purificata.

Asciuga le tue lacrime e non piangere, se mi ami:

il tuo sorriso è la mia pace.

Death is nothing.

I have only gone over to the other side:

it is as if I were hiding in the next room.

I am still who I am, and you are still who you are.

We are still what we were to each other.

Call me by the name you have always used, the one that is familiar to you.

Speak to me in the same affectionate way.

Do not change your tone of voice, do not look solemn or sad.

Keep laughing at the same things that made us laugh,

at those little things that we loved when we were together.

Pray, smile, think of me!

Let my name always be the same familiar word:

utter it without any trace of shadow or sorrow.

Our life means everything that it has always meant:

it is the same as before, there is a continuity that cannot be broken.

Why should I not be in your thoughts and mind, just because I am out of your sight?

I am not far, I am on the other side, just around the corner.

Be reassured, all is well.

You will find my heart again,

You will find its purified tenderness again.

Wipe your tears and do not cry, if you love me:

your smile is my peace.

Earlier today, while taking a break from work zzzyawnzzz, I happened to read about a recent Mayo Clinic study on vitamin D levels in chronic lymphocytic leukemia (=CLL) patients. Well, how coincidental is that (see yesterday’s post…)???!!!

Let’s start with the Science Daily report on this study: http://goo.gl/JUaGj Here we find out that patients with insufficient levels of vitamin D when their leukemia was diagnosed progressed much faster and were about twice as likely to die as were patients with adequate levels of vitamin D. This study shows that, for the first time ever, CLL patients may be able to put the brakes on their progression, at least to some extent (note the use of the conditional tense…). Wowsie!

Well, I can safely say that if I had CLL I wouldn’t sit around and wait for the results of the Mayo CLL-vitamin D study. Nope. I would skedaddle down to the nearest lab to have my vitamin D levels tested and, if these turned out to be low, I would buy myself a good vitamin D supplement…

Besides, Dr. Shanafelt, the Mayo study’s main investigator, seems to give CLL patients the go-ahead…He is quoted as saying: “It appears vitamin D levels may be a modifiable risk factor for leukemia progression. It is simple for patients to have their vitamin D levels checked by their physicians with a blood test,” he says. “And if they are deficient, vitamin D supplements are widely available and have minimal side effects.”

Here is the direct link to the Mayo abstract, published in “Blood”: http://goo.gl/oM2Fi Note this: after median follow-up of three years, more patients in the insufficient vitamin D category progessed and had to begin chemotherapy (=they had a shorter TTT or time-to-treatment), and their overall survival was also negatively affected. A median follow-up of 9.9 years showed the exact same results. Conclusion: Vitamin D insufficiency is associated with inferior TTT and OS in CLL patients. Whether normalizing vitamin D levels in deficient CLL patients would improve outcome merits clinical testing. Good point. [OS = overall survival, by the way.]

Let’s now take a few minutes to listen to what Dr. Shanafelt has to say: http://goo.gl/IbwRH I thought it was interesting that, among other things, he talked about how difficult it is, emotionally, for CLL patients to be in the “watch and wait” category and be told that there is nothing they can do to stop their progression. Patients want to be proactive, he says…Hmmm, now doesn’t that sound familiar?

Well, by having their vitamin D levels tested, CLL patients can certainly make a first step towards…proactiveness. Dr. Shanafelt points out that between 30-40% of the CLL patients in the study were found to be vitamin D deficient. And their cancer was more aggressive compared to that of normal vitamin D CLL patients. What remains to be established, he adds, is if this aggressiveness can be blocked by adding vitamin D (as we read in the abstract).

Okay, so let’s see…

1. CLL patients with vitamin D deficiencies were 66% more likely to progress and need chemotherapy…

2. And twice as likely to die…

3. And this is a Mayo Clinic study…

Ehm, would the IOM committee of experts (see yesterday’s rant) perhaps care to amend its vitamin D recommendations? …

Hah. Got your attention, didn’t I? 🙂  Well, I wrote that screaming title for a very good reason, as we shall see in a second…

No matter how many times it happens, I still cannot get used to how the media can take a study and distort it so as to scare/freak out people for absolutely no reason whatsoever…Oh, well, except that a scary story creates more debate and interest than a ho-hum boring story, right? Let’s compare the following headlines (I just invented them to make my point):

Headline 1: “Expert panel says that supplementing with vitamin D and calcium has no benefits and could even be dangerous for our health!!!”

EEEEKKK! I’d better stop taking vitamin D right NOW. Right? Wrong. Let’s have a look at the next headline:

Headline 2: “Expert panel recommends a daily intake of no more than 4000 IUs of vitamin D and no more than 2000 mg of calcium…” Oh, okay, the news isn’t that bad, then…

But “Headline 1” was what screamed back at me (and probably at most people) this morning, when, thanks to a blog reader’s message and to a friend’s post on Facebook, I read an article published on November 29 in the New York Times: http://goo.gl/PFtZr (You might have to register with the Times to view this article…or try doing a Google search for it. The title: “Report Questions Need for 2 Diet Supplements.” Hah.

On the spur of the moment, I jotted down and left a rather irritated comment on my friend’s post, pointing out, among other things, that the Mayo Clinic conducted a study on vitamin D levels and myeloma patients in 2009 (see: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/myeloma-and-vitamin-d/; in particular, see the link to the Mayo Clinic study, which is the first one listed in my Dec 10 2009 post). This expert panel clearly hadn’t read that study, which demonstrates that patients in advanced stages of myeloma but with normal levels of vitamin D have better outcomes than those who are vitamin D deficient.

After writing that comment, I went to PubMed and did a search for vitamin D. I came up with almost 50.000 entries. Uff. Obviously, since I am also supposed to be doing some work (paid work…), I didn’t have the time to go through any of them…But just the ones on page 1, that is, the most recent ones, showed the many benefits of vitamin D supplementation in a variety of conditions—rheumatoid arthritis and so on.

Well, I had no choice. I set my translation aside for a moment and looked up the original IOM report, the one mentioned in the Times article. It just so happens that it was released yesterday. You can download it here: http://goo.gl/9ppGu This is when I realized that “Headline 2” would have been more appropriate…ah, but not as spicy, eh! 😉

This should teach us a good lesson: whenever scary headlines about a newly-published study or report spread like a poison ivy rash all over the Internet, we should always remember to check THE source of information before panicking or getting mad…

The report (see above link) is only four pages long and isn’t complicated at all, so I urge you to go have a look. Let me just give you an excerpt from page 4: …the committee concludes that once intakes of vitamin D surpass 4,000 IUs per day, the risk for harm begins to increase. Once intakes surpass 2,000 milligrams per day for calcium, the risk for harm also increases. Well, that sounds reasonable to me…and it’s more in line with my invented “Headline 2.” 

Do you remember that outraaaageous study in which a group of older women were given a once-a-year mega dose of vitamin D—100.000 IUs??? The high-dose group, as I recall, was found to be at a higher risk of developing fractures. That vitamin D mega dose study was one of the dumbest things I have ever read. My reaction was: HELLOOOOOO????? Well, it is mentioned in the IOM report…

I mean, let’s say that you have chronic headaches for which you take a daily dose of aspirin. Now, just because aspirin manages to get rid of your headaches, would you swallow the contents of 100 bottles all at once? No, I didn’t think so. Another example (hmmm, these are not great examples, but I am in a hurry, sorry…and I suppose I should apologize for any repetitions, again due to the fact that I need to go back to work…): just because 8 grams of curcumin are doing their best to keep me stable doesn’t mean that I will increase my dose to 300 grams a day…

Too much of a good thing may not be a good thing at all!

Let’s get back to the IOM report. It definitely has some holes in it. For instance, I don’t agree that the benefits of supplementing with vitamin D are restricted to bone health. For us myeloma folks and probably for patients with other types of cancer, the benefits go way beyond that, but hey, don’t take my word for it: go read the Mayo Clinic’s 2009 study.

I wish I had the time right now to address all the points that seem a bit or even very weak to me. Well, the big one, of course, is that there is no mention of how much vitamin D cancer patients (not just myeloma, of course) need. On second thought, there probably is no data on that, which could explain why the experts avoid the issue entirely. But hey, that is a BIG issue…at least for us. And studies such as the Mayo Clinic study cannot and should not be ignored.

Everyone diagnosed with MGUS, SMM or MM should have their vitamin D levels tested. This test really should be part of our routine tests. When I first had my D levels tested, they were amazingly low. I was vitamin D deficient, in other words. As so many of us are, probably without knowing it…

I need to get back to my translation now. Bummer. I would much rather do some research…

Very tired today…have a lot of work to do…zzzyawnzzz…but I stopped for a few minutes to watch/listen to a lovely video (thanks, Paul and Lisa!)…

Here you can watch the video and read the article describing what happened: goo.gl/F1UE1 Enjoy!

Yesterday Stefano and I took the day off. When we got up, it was such a lovely sunny day that he suggested we drive to Pisa (about an hour from Florence) and spend the day there.

Gee, twist my arm! I was ready in less than five minutes…We put down enough food for the cats and off we went…

Every time I step into Piazza dei Miracoli it’s is like the first time…I am always taken aback…It’s simply stunning…and no words can possibly describe it properly. So I won’t even try…

Stefano and I whipped out our cameras, of course, which in his case is not an easy feat. You see, he has a big super duper complicated camera and a big heavy tripod (which he had to carry around all day…and I have a reason for mentioning this, as you will realize in a second), whereas I have a rather small, compact automatic Canon, which I looooove and wouldn’t change for anything more complicated…

Anyway, we both began taking photos of the square and of the people in it…(By the way, these photos were taken at different times of day, so some have clouds in ’em and some, taken earlier in the day, don’t…)

Yes, that’s right…of the people. I really really enjoyed taking photos of tourists who looked as though they were practicing tai chi or qigong but were actually posing so that it looked like they were holding up the tower of Pisa with their hands, just as my sweet little Myeloma buddy Honey is doing (oh, but, since her hands are clasped to her bosom, she had to use her entire head…)…and as the woman in shiny boots is doing (not with her head…). Ahhh, so very amusing!

In just a little while, I counted at least 50 people doing more or less the same thing…Some folks got really carried away and would lean this way and that, with hilarious facial expressions…while their partners shouted, in different languages, something like: “Okay, turn the index finger on your right hand slightly to the left…no, to the left, not to the right…ahhh, that’s good…okay, now raise your left palm slightly…no, not like that, like this…blablabla.” I listened in particular to two U.S. women who were very keen on getting THE ABSOLUTE PERFECT “I-am-holding-up-the-leaning-tower-of-Pisa-with-my-own-hands” photo…It took them at least ten minutes to prepare and take it…But, for privacy reasons (=you can see the posing woman’s face), I won’t publish the photo I took on the sly of that little scene…

We had been in the square for only a few minutes when I heard my Stefano let out an unhappy moan/groan/wail. When I asked him what the matter was, he told me that both of his camera batteries had died…BOTH…and he didn’t have a replacement! A photographer’s WORST nightmare! Just imagine…there you are, with, say, a black-breasted puffleg in front of you…just about to take THE photo that would win you THE National Geographic’s “BEST PHOTO EVER” award…and your camera dies…Eeek!

Of course, since his is a big super duper complicated camera, I am sure that you have figured out that his camera batteries are not your regular AA ones (like the ones that my camera takes). Oh no. These are big super duper complicated batteries…

It gets worse. Stefano’s discovery occurred just 15 minutes before 1 PM. Shops here close at 1 PM and do not reopen until 4 PM…

I am a positive-thinking kind of gal, though. So, while he was putting his big super duper complicated gear back into his big super duper complicated backpack, I hurried over to a couple of traffic policewomen to find out where the nearest photo equipment shop was. And so Stefano and I trotted off to see if we could reach it before closing time…

No such luck.

And, as I just mentioned, the shop wasn’t going to reopen until 4 PM…too late…

Well, we weren’t going to let something like that ruin our glorious sunny day in Pisa. Er, let me correct that statement: I wasn’t going to let that ruin our glorious sunny day in Pisa. I very thoughtfully told Stefano that he could use my camera whenever he wished…but he merely glared back at me and snapped rather haughtily that he wouldn’t even touch my …dotdotdot… crappy camera. 🙂 Whatever…

As a result, I took many photos of Pisa…and he simply…glared and made a few rather inaudible remarks about life not being fair and what an idiot he was and…well, you get the picture. Okay, okay, I am exaggerating a bit and having a bit of fun with this…We actually did have a lovely time, and he looked fiercely at me only a couple of times…(And now I am in trouble, since he reads my posts…hehe).

Change of subject, quick!

If you go to Pisa, don’t forget to walk down to the Lungarno. Lungarno literally means “Along the Arno.” The same river (the Arno) that runs through Florence runs through Pisa, too, you see. On the Lungarno you will have a lovely view of a miniature Gothic church, called Santa Maria della Spina (look behind Honey, and you will catch a glimpse of it on the other side of the river), which originally (it was built in the year 1230)  seems to have been a loggia with an oratory attached to it but was transformed into a small church in the early 14^th century. You can read more about it here: http://goo.gl/Uixfl

Oh, and if your camera batteries are fully charged (and perhaps not super duper complicated), you will also be able to take a few photos of this cute little jewel of a church. (Oh boy, NOW I am in double heaps of trouble…!) 😆

Speaking of jewels…

There is another very good reason to visit Pisa’s Lungarno: CHOCOLATE! One of the best chocolatiers in Tuscany is located on the same side of the Arno river as Piazza dei Miracoli (or on the opposite side with respect to the tiny Gothic church).

The name of the shop is “Cioccolato De Bondt.” You are right. De Bondt is not a Tuscan surname. The shop, as you can read here http://goo.gl/cQOVP, owes its name to Paul De Bondt, a Dutch cook and confectioner. He and his Italian partner (who, by the way, was in the shop yesterday…and took a fancy to us and kept giving us yummy little chocolate jewels to taste, mainly with different types of hot pepper and ginger…) have won many national and international awards.

Needless to say, we are all set for a chocolate Xmas now. 😛

Well, that certainly was a sweet finale to a glorious day in Pisa…

As soon as we got home, I went to feed the cats, while he went to charge his camera batteries…

We all have priorities…(Okay…and now I’d better go into hiding for a couple of days…ROTFL 😉 )

When pomegranates are in season (right now, actually), Stefano and I add their ruby red (and tart!) seeds to our organic green salads…or I simply eat them by the spoonful. I have known for some time now that pomegranates are very very very good for us but, even so, I was a bit surprised when I read what this Science Daily article had to say on the subject: http://goo.gl/BT6FB 

An excerpt: (pomegranate juice) is a good source of antioxidants and lowers both cholesterol and blood pressure, especially in diabetic and hypertensive patients. A preliminary study now suggests that it can ward off a number of complications in kidney disease patients on dialysis, including the high morbidity rate due to infections and cardiovascular events, according to a paper being presented at the American Society of Nephrology’s 43rd Annual Meeting and Scientific Exposition in Denver, CO.

Anyway, have a look at the article…especially if you have any kidney-related problems…