Myeloma and vitamin D

(Most recent post first…scroll down for older posts and for the important Vitamin D-myeloma studies)

October 31 2015 post: I’ve written a bunch of posts on the link between vitamin D deficiency and icky happenings in myeloma. Ever since my SMM friend “Sherlock” talked to me about the importance of taking vitamin D, in fact, I’ve been “obsessed” with it, especially after reading, and writing a post about, the 2009 Mayo study on vitamin D and myeloma folks (click here to read the full Mayo study: http://goo.gl/qfO9Bp)

I take vitamin D every morning. It’s important for so many reasons, many of which I’ve written about here on the blog. For more information on vitamin D or any other topic, for that matter, you can do a search of my blog using the handy Search Box on the right-hand side of the homepage.

So why am I picking up this topic again today? Because, thanks to Frank’s post on Facebook, I just finished reading the abstract of a 2015 German study on, you guessed it!, the importance of vitamin D for myeloma patients: http://goo.gl/5InpVM

Important excerpt: “We found a widespread and alarming rate of vitamin D deficiency in patients with metastatic bone disease and multiple myeloma.

Well, it seems crystal clear (once again!) that the vitamin D test should be added to our routine series of blood tests. And we NEED to act quickly if we see signs of a deficiency, by asking our doctors to recommend a good vitamin D supplement.

June 11 2011 post:  A brand new study, which has just been presented at the Endocrine Society’s Annual Meeting in Boston (June 4-7), shows that maintaining a circulating vitamin D level above 33 ng/ml is associated with a seven-fold greater likelihood of having a more favorable outcome with bisphosphonate therapy. SEVEN-FOLD! Even I am stunned…

The evidence in favor of vitamin D certainly keeps accumulating, doesn’t it? By the way, the time has come for me to thank my friend Sherlock for talking to me about vitamin D about four years ago. It is only thanks to her that I had my levels checked…and then my quest began…Grazie, Sherlockissima!

Without further ado, here is the link to the press release about this new study: http://goo.gl/fcxWQ Wow…

March 6 2012 post: ….An abstract on the importance of vitamin D especially for IgG kappa folks (what’s that all about? I guess we’ll have to wait for the full study to be published…uff), and it’s going to be presented at a conference next month in Dijon, France: http://goo.gl/QIXkU

Discussion: Vitamin D could be considered as an effective prognostic factor and treatment of MM, especially in patients with monoclonal IgG kappa immunoglobulin.

March 2 2011 post: A recently-published study on a high vitamin-D bread tells us that as many as 70% of the U.S. population may have insufficient vitamin D status. Eeeek!!! A blogging friend (thanks!) sent me the full study…Now, you can find the gist in a Science Daily article (http://goo.gl/dBufl), but if you are feeling particularly audacious, go have a look at the study abstract: http://goo.gl/PqyzS

This could actually be a bit of very important news, especially for those of us myeloma folks who don’t believe in supplementation, particularly in vitamin D (not my case, of course! Even though, come to think of it, I don’t take a huge amount of stuff…mainly, curcumin, fish oil, quercetin and vitamin D…oh, and a vitamin B complex right now…but normally I don’t take any vitamins etc. I try instead to have a healthy diet with lots of herbs and spices…).

Another point. If you are new to my blog and need some convincing on how important vitamin D is for MM, MGUS and SMM folks, please have a look at the 2009 Mayo Clinic study, which proved that MM patients with normal levels of vitamin D had better outcomes than those with low levels of this vitamin. You can find the link here: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/myeloma-and-vitamin-d/ After reading that study, I began pushing for the vitamin D test to be part of our routine tests, especially especially ESPECIALLY at diagnosis. I mean, you don’t want to be in the “worse outcome” group, do you? No, didn’t think so. I don’t, either!

December 2 2010 post. 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? …

December 1 2010 post. 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