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 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…

December 10 2009 post. This is a continuation of yesterday’s post. Well, knock me down with a cat’s whisker! I am really pleased with what I found on PubMed: quite a few studies on multiple myeloma and vitamin D levels. Almost 100, in fact! I don’t have time to go through ALL of them (hah)…I have looked only at some of the studies listed on page 1, and I don’t have the full studies with one exception (see below), but the abstracts contain enough information—for now, at least.

For instance, this July 2009 Mayo Clinic study concludes that vitamin D deficiency may portend poorer outcomes in subjects with MM (see: http://tinyurl.com/yz67bxn). Of the 148 newly diagnosed multiple myeloma patients scrutinized at the Mayo Clinic over a period of four years, the ones with vitamin D deficiency had higher levels of C-reactive protein (CRP) and creatinine AND lower serum albumin compared to patients with normal vitamin D levels. Eh that’s not good at all! Furthermore, the D-deficiency increased in parallel with the International Staging System…that is, patients in Stage III were more vitamin-D deficient compared to those in Stage II.

A more recently-published study, http://tinyurl.com/yzxt288, simply mentions myeloma: A vitamin D deficiency has also been documented in patients with prostate cancer, ovarian cancer, as well as multiple myeloma. Larger randomized clinical trials should be undertaken in humans to establish the role of vitamin D supplementation in the prevention of these cancers. I couldn’t agree more.

Truth be told, I am very busy today, so I have time only to post about one more study, titled “Prevalence and significance of vitamin D deficiency in multiple myeloma patients,” published in the British Journal of Haematology in May 2008. The full text is available for free online: http://tinyurl.com/yf8fahx It’s only three pages long, so please go have a look. Good stuff!

This study was conducted on 100 myeloma patients seen at the University of Maryland between September 2006 and October 2006. Of these, 40% turned out to be vitamin D-deficient. FORTY PERCENT…makes you pause for thought, eh? And have a look at this percentage: only 25% had adequate vitamin D levels, defined as more than 75 nmol/l. Eh.

Important: There were no significant correlations between vitamin D status and MM activity (remission, relapsed or newly diagnosed), presence or absence of lytic bone disease and/or fractures or history of osteonecrosis of the jaw (ONJ). So vitamin D didn’t do any harm, which is an important bit of news for us. I was concerned about increased serum calcium and whatnot when I began supplementing with vitamin D last spring. No worries now…

The following excerpt confirms what my endocrinologist told me, that is, that my highish parathyroid hormone, or PTH, levels (for info on PTH, see http://tinyurl.com/ch8za) are connected to my low vitamin D levels: Patients in the vitamin D deficient and insufficient groups had higher serum PTH levels than those in the sufficient group. Interestingly, PTH levels were also higher in patients with renal insufficiency. And in patients with bone pain. Gee whiz. If you have high PTH levels, read this part carefully…

Then on page 2 we are given actual vitamin D supplementation numbers, which is very helpful. The vitamin D-deficient patients were given a huge amount of vitamin D (you will find the exact numbers in the study) until they reached the optimal level of 75 nmol/l, at which point they received maintenance therapy consisting of 1000 IU (international units) of vitamin D3 per day.

Wait. Pause for a moment…a question just popped into my head: on the recommendation of my endocrinologist, I am taking vitamin D3, cholecalciferol, but the folks in the study were given vitamin D2, ergocalciferol. Any comments on this? What form of vitamin D are you taking?

Let’s read on: Responses were favourable in most patients, with increases in 25(OH)D and decreases in PTH levels, even in patients with renal insufficiency. Many symptoms of vitamin D deficiency resolved after supplementation, including muscle weakness (n = 7), fatigue (n = 7) and chronic bone pain (n = 10). Well, this is very good to know. Unfortunately, many of these patients relapsed after one year, but this had nothing to do with their vitamin D levels.

A final excerpt: The present study found a high incidence of vitamin D deficiency in MM patients. Vitamin D deficiency was independent of age, sex and disease status; the lack of sun exposure because of limited activity may play a role. A recent update of the American Society of Clinical Oncology recommendations for bisphosphonates use in MM did not mention the role of Ca and vitamin D supplementation (Kyle et al, 2007); this emphasizes the need for education about the role of vitamin D in maintaining bone health (Guise, 2006). In conclusion, the recommended daily 400 IU of vitamin D is inadequate for healthy adults and a higher daily supplementation (1000 IU) should be standard maintenance, after correction of the deficit, guided by vitamin D serum level. The current study found no correlation between vitamin D status and MM activity.

Okay, in my opinion, the message is clear: get your vitamin D levels tested immediately and, if need be, discuss vitamin D supplementation with your MM specialist. Don’t put it off!

December 9 2009 post. A new study has found that the amount of vitamin D in patients being treated for diffuse large B-cell lymphoma was strongly associated with cancer progression and overall survival. After rereading that sentence for the hundredth time, I realized how ambiguous it actually sounds…does it imply that high vitamin D levels are good or bad for lymphoma patients? Let me reassure you…it’s the former! 

Vitamin D deficiency has been linked to poor outcomes in other types of cancer (breast, colon, neck and head, e.g.), but this happens to be THE first lymphoma-vitamin D study. Let’s first have a look at the December 9th Science Daily article (from which the potentially alarming excerpt was taken): http://tinyurl.com/yatz6yy.

Here we learn that 50% of the group (374 patients) of large B-cell lymphoma patients evaluated in this study were found to be vitamin D deficient. 50%! Well, it turned out that the vitamin D-deficient patients were more likely to progress and…die…compared to patients with optimal vitamin D levels.

And read this: Recent studies have suggested that vitamin D deficiency may play a role in causing certain cancers as well as impacting the outcome once someone is diagnosed with cancer. I mean, even if you tend to scoff at the health benefits of vitamins and herbal supplements (as I used to do…and I still don’t take vitamins on a regular basis, with ONE big exception–vitamin D!), you cannot possibly ignore the significance of these findings.

Incidentally, this study was conducted by a Mayo Clinic/University of Iowa research team and financed by the National Cancer Institute and the Mayo Hematologic Malignancies Lymphoma Fund. The Mayo Clinic, need I say more? The team presented their results at the ASH annual meeting on December 5th, so I looked for and found the  paper on the ASH website: http://tinyurl.com/y9oad45

It’s easy to read and provides a lot of details, so please go have a look. The paper concludes that Vitamin D deficient patients have an inferior event-free and overall survival compared to patients with vitamin D levels within the normal range. Okay, that statement is crystal clear…not ambiguous at all. The researchers recommend that vitamin D testing for lymphoma patients be conducted in a clinical setting. Good idea.

Well, this question popped into my head, of course: what about myeloma patients? Is vitamin D testing the norm for us? Probably not. It certainly is not the norm here in Italy. In fact, the first person who insisted that I have my vitamin D levels checked was my friend Sherlock. If that is the case everywhere, then I think we should put pressure on our MM organizations to check out the possible link between myeloma progression and vitamin D levels…But I have to do some research first. There may already be a myeloma-vit D study out there (doubt it…).  

Okay, let’s see…back to the paper…based on the vitamin D reference range given here, I am (or was, in October) borderline vit D deficient. Ouch! (Okay, okay, no surprise there, I already knew that…) Since I have always hated being in the sun and never used to take vitamins…or anything else, for that matter!…I bet that my levels of vitamin D have always been low. Unfortunately, it never occurred to me that the vitamin D test might be important, so I never had one. Hmmm, come to think of it, I rarely had any blood tests done before 1999. Ah, how things have changed!!!

Well, better late than never. May this be a good lesson for all of us: 1. we should have our vitamin D levels tested, 2. go see a good endocrinologist, and 3. if need be, supplement with vitamin D. Yes, I have definitely become a vitamin D believer…! And let’s not forget that vitamin D may prevent H1N1. Oh, by the way, a TON of information can be found on the Vitamin D Council website: http://www.vitamindcouncil.org/ Oh, and thanks, LPC, for sending me the link to the SD article!

November 25 2009 post: I have been feeling unusually weary in the past few (several?) days, so I have been taking it easy whenever possible. As a result, I have ignored the blog and haven’t done any research or finished editing any of my drafts.

About half of my students are convalescent, coughing germ-factories As for me, I have no flu symptoms, just this bothersome fatigue and occasional night sweats, which might be caused by an inner battle with some sort of virus. So the other day, just to give my immune system a little boost, I began taking two teaspoonfuls of Sambucol. I don’t know what is causing my tiredness, but I am not concerned: it gives me a good excuse to lie down during the day and catch up on my reading, surrounded by sleeping or purring cats…

Today I thought I would post the link to a November 24 Science Daily article on vitamin D, which, by the way, I take on a daily basis (in the form of cholecalciferol/vitamin D3). Don’t forget to read the next-to-last paragraph on heart disease: http://tinyurl.com/ylavp4x Ah, and one last thing: please be careful not to take too much vitamin D: http://tinyurl.com/b92tnz

8 thoughts on “Myeloma and vitamin D

  1. Patty

    I have heard quite a bit about Vit D. In fact during a annual visit to my primary doctor, he gave me a lengthy sermon on taking Vit D and recomended that I take 4,000 IU a day. He had in a previous year tested my Vit D level and found it low. He evendently attended a seminar on the benefits of Vit D and discovered our bodies contain numerous receptors throughout the body. He is convinced that the benefits are tremendous for various ailments. I was previously taking Vit D3 but not that much in IU’s. Will see if this makes any difference in my Asymtomatic MM.

    Reply
  2. Norita

    Hi, I am waiting for my BMB. my dr was not able to get blood at all, but just blood cells from the piece of bone he was able to extract.
    I see him next week for diagnosis. What kind of questions shall i ask if i got MGUS or MM? i am scared.

    Reply
  3. arie arieli

    Hi Margaret ,Dr Mercola emphasizes the synergy between VitD3 and VitK2 (you wrote on both).I found fermented cabbage to be the most tastiest natural source for VitK2.

    Reply
  4. Mike

    I read somewhere that levels above 70 are optimum if you have cancer. My wife was around 30 a year ago. Started 5000 iu of d-3 twice a day. Tested last week at 62. Will increase to 3 times per day. Taking K2 MK7 along with it.

    Reply

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