We know that vitamin D levels are one of the factors that influences our likely prognosis with CLL. It seems that there is still a great deal we need to learn in general about the importance of vitamin D and perhaps the importance to our general health of the main source of our vitamin D supply - sunshine!
Peter Robert Ebeling, Head, Department of Medicine, School of Clinical Sciences; Professor of Medicine at Monash University explains:
I found the discussion on the influence of sunshine on (the suppression of) our immune system, auto-immune disease and inflammation particularly interesting. Obviously there's much more to learn.
Neil
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Which begs the question that why in Canada with socialized medicine do we have to pay $36 for a vitamin D test when it has such ramifications with CLL? Weren't billions raised for cancer (oh, my bad, weren't billions raised for cancer profiteers?). When are these funds going to get channelled to the patients whose stories are used to extort cancer donations?
This chimes with my recent experience. I've been taking Vitamin D3 in oil capsules since reading about the benefits for CLL on Chayers CLL Topics site. I found it helped with the fatigue and it also replaced the sunlight that I was hiding from it, it being so dangerous to us CLLers.
Recently I ran out of the D3 capsules and I discovered that after two weeks a patch of darker skin on my cheek began to look worse and started to crack. After I started to take the D3 again overnight my skin looked better and went back to normal so it seems D3 is vital to my state of health.
Excuse my interrupting your question to Splashsplash, but you'll find that the amounts vary as much as our CLL presentation. I've seen vast differences in the amount reported as needed by different people with CLL. Unfortunately there's probably not much of a short-cut other than having your level checked and using a trial and test method to work out what's right for you if you are low. Having said that, I do have a copy of a paper that came up with a formula recommending the daily dose needed to get from the measured level to a desired level. It came out about right for me, but the equation was not derived from a population of CLL patients.
This is a very interesting article. I have been saying for a fewith weeks now that all I need is a bit of warm sunshine.
I was dx in April 2010 after a long winter working nights. From Xmas onwards I had felt dreadful. I feel pants most winters but I've been on a late pm shift since October, only seeing a couple of hours of sunshine a day, at best, and I feel I'm back to square one.
When I read this article I had picked my phone up to Google CLL and arthritis coz my joints are quite achy today. And next week I'm seeing a bowel specialist.
I believe I should look into a vitamin D supplement.
Vitamin D is actually more properly classed as a hormone and is important to the cellular function of pretty well all body cells in addition to its essential role in calcium metabolism, so it's not surprising you are missing sunshine. Natural light is also very important for maintaining your circadian rhythm and much more. I expect that you are aware that there are recognised health risks associated with shift work, but someone has to take the night shifts .
With regard to your arthritis, if it is fairly mild, you may get some relief from taking turmeric, as it has mild anti-inflammatory properties, plus is unlikely to harm your CLL and may actually help. You should still have your arthritis assessed by your doctor of course and as with the case with anything you take for a pharmacological purpose, weigh up the potential benefits versus the possible risks - for example, you could find that turmeric exacerbates your bowel condition. Everything has side effects .
As CLL is mostly a Northern hemisphere condition (genetically speaking) where we get little sun, it seems logical that lack of Vit D might be an important factor.
I made it a strict policy to avoid sunlight and supplement with vitamin D3 to keep serum levels at or above 60 by hydroxyvitamin D3 testing. I got tested twice a year, once in Dec. and once in June to assess fluctuation from incident sunlight variation at the extremes of a year. Two years after failing FR and HD-RTX I was looking rather cadaverous and began to crave sun exposure. Since I had no FISH result showing mutation or deletion of TP53 I began to expose my bod to no more than 15 minutes a day of sun. I began to feel similar to having eaten a delicious meal. I ran sunning by my Dermatologist to get his opinion since I had him remove an SCC (squamous cell carcinoma) from my shoulder three years prior. He encouraged my sunning provided I did not allow burning and to go very slow with brief periods of exposure.
I feel much better having done so but would not be doing so if I had TP53 or ATM impairment. These genes are critical to DNA/cellular repair and maintenance. I would also not sun myself just prior to therapy, during therapy or a year or 2 after therapy or any time my neutrophils were low. A link to balance the risk vs reward of sun exposure and vit. D levels. sciencedirect.com/science/a...
Being live creatures we all drink from the poisoned chalice which has defined the study or concept of "Hormesis" which is most controversial when considering ionizing radiation. We all know that exercise is good for us but exercise breaks down muscle cells yet muscles come back stronger.
Interesting to hear of your sun exposure experience. I think the critical issue relating to countering the damage from sun exposure are your Natural Killer T-cell levels and activity, not your neutrophil levels. Unfortunately its not a simple test to check NK levels and that doesn't tell you how active they are either. There must be some degree of suppression by CLL B-cells to account for our higher risk of skin cancer.
I agree about the NKs and Neutrophils and should have clarified that I gaged my immunosuppression from chemo/mAb therapy (Correctly or not) by Neutrophil (ANC) levels which as you know are regularly monitored by CBC. Some patient Immunosuppression is quite evident by frequency of infections but in my fortunate case I had zero problems with infections even being neutropenic post FR.
I also wonder about the dynamics involved between the innate and humoral systems when one is under stress. How much does therapy suppression on some elements of immunity affect other arms? I also am aware that immune function may not be equal in fighting infectious critters as compared to keeping secondary cancers at bay so my rationale may just be that, a rationale to allow myself the luxury of feeling the sun on my cadaverous bod once more without guilt.
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