Hi I am new here, my husband was diagnosed with CLL 3 years ago (although only given the dx two years ago - but that is a different and longer story). He has really only been given poor information, a lot of "that has nothing to do with CLL" and a referral to oncologist who only seems to want to know if there are night sweats and then he will do "a little chemo" otherwise not interested in talking. So I am on the hunt. I ran across the following quote but am having trouble finding the article. I am currently looking at the Vit. D bit. I had asked family doc to do a Vit. D level and they refused saying he had no symptoms, so now I am looking for an recent article to support the test. I know about the Mayo one, but it is not conclusive enough for this doc. Anyone out there know about the article they are referencing?
Vitamin D may have a protective association against chronic lymphocytic leukemia –but not lymphoma cancers on the whole — according to a new study published in the American Journal of Clinical Nutrition.
I will likely be back with some more questions.
thanks
deb SW Ontario, Canada
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debvpn
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Might try Juravinski CC in Hamilton, they have a couple of doctors who see a lot of CLL.
There is a major study at the Mayo currently on augmentation of Cholecalciferol, VitD3, levels in a wide range of cancer, and CLL and SLL are specifically being studied. The trial will run 3 years.
'Our findings do not support a protective role of high 25(OH)D concentration in lymphoid cancers overall. However, they suggest that higher concentrations of 25(OH)D are associated with a reduced risk of CLL.'
It is taking about reduced risk of getting CLL, nothing about the effects of increasing 25(OH)D after CLL diagnosis...this is similar to the initial Mayo study... time to first treatment/progession... from what I understand.
Inecalcitol is in Phase II clinical study of orally in patients with CLL requiring no further chemotherapeutic treatment but with high risk of progression
Hi Debvpn
Welcome to the Cll site though we all wish we did not need to be here.
Unbelievable that your doctor would refuse to do a Vit D test.when a CLL diagnosis has been made. I asked my Doctor to do one as I had started taking Vit D having seen similar articles and taken notice of advice on this site.
The outcome was that I had a level of 105% and I should stop taking it, as I had sufficient levels. My doctor also decided that the hospital was not testing Whole Blood Count as often as she would like, so has instigated additional checks.
Perhaps a change of doctor is on the cards, as your husband will need to have confidence in him/her.
The video below is not specific to CLL but I found it to be highly worthwhile watching. Whether or not Vit.D3, as Cholecalciferol, has specific benefit to CLL patients is not perhaps its greatest virtue. The twin threats contributing to CLL patient morbidity outside of the cancer itself, is infection and secondary cancers. In this context and given the low cost coupled with little concern over toxicity it passes the benefit vs risk test for me. When I attended my first CLL Canadian Conference in 2007 I met Dr. Stephen Sagar who is a radiation oncologist at the Juravinski Cancer Center and lectures on Alternative/Complementary medicine. He is a believer in that he told me that he takes 4,000iu D3 daily. Optimal dosing for healthy people vs cancer patients is unknown but one needs a 25hydroxy test to establish if a deficiency exists. The further north one lives the less sun and a more likely benefit from D3 is not hard to imagine. On a personal note: I have taken up to 5,000iu daily in the darkest days of winter and taper dosing to 1,000iu daily depending on solar exposure. While one patient's experience cannot verify a theory, I have had only 3 colds since the Fall of 2005. I did get a SCC (Squamous Cell Carcinoma) and a brief reactivation of herpes simplex after TX with FR but otherwise I am exceedingly healthy for having a terminal cancer and being 70yrs old.
I recall reading something about the association of Vitamin D and CLL , but cannot remember where. It was unclear if a lack of vitamin D causes CLL or those with CLL have low vitamin D levels. Either way, I have both. I am currently under the care of a doctor that this cite refers to as the Godfather of CLL, Dr, Kanti Rai, at Long Island Jewish Hospital in New Hyde Park, NY. I am at Stage 0 . Prior to seeing Dr. Rai, I was seeing another hematologist from the very reputable cancer hospital, Memorial Sloan Kettering. He had me immediately start taking green tea supplements; EGCG 350 mg. daily, sourcenaturals.com/products...
and Maitake Mushroom Supplement; mushroomwisdom.com/products... (I only take 2 per day, one at breakfast and one before bed for a total of 300 mg.) You can shop on the Internet for better prices. Since taking these my levels have improved consecutively for 2 six month visits. I also take 2000 Vitamin D daily, split between morning and bed.
I can't believe that a doctor would refuse a basic vitamin d test. I live in sunny southern California and never expected that my D level would be low, but it was well below the bottom the the charts. I have worked with my PC with testing every three months for two years until we found a stable dose (now every 6 months). I don't mention doses any more, because everyone who writes about this seems to need a very different one, but mine is quite high compared to others here to maintain an in range report. Since I started supplementing my bone density has improved and my bone pain has decreased. May be coincidence - no scientific evidence - but I'm happy with the results.
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