Iola ghulam

I am the wife of Najim who has been diagnosed with CLL for the 5 years, his count is increasing, he was 60 this year. I have been studying Naturopathic nutrition for the last three years and I am about to qualify. I just want to share with other members things I have discovered about CLL, there is a possible link between CLL and lack of Vitamin D, the Mayo Clinic in America have been doing research into the effects of low Vitamin D levels and the progression of the disease.(please check out their information of this subject, knowledge is power). CLL is a northern hemisphere disease, it does not usually effect middle eastern people, of course unless they migrate to countries where there is little or no sunlight. So my husband was unlucky that he made the move. The Mayo clinic have hypothesized that if the disease is treated with Vitamin D in the early stages , they think it may go into remission or even reverse it completely. Vitamin D has been shown to cause apoptosis (cell death) of CLL cells. I have been supplementing my husband for the last 2 years, when he was intially tested for Vitamin D deficiency he was very deficient, he now has normal Vitamin D levels but the effects we were hoping for have not materialized. The only time we saw a reduction in his lymphocyte count was when we had to stay in Egypt for 3 weeks, at the time of the ash cloud, I am now working on the theory that for the therapeutic effect I am hoping for can only be achieved by the synthesis the Vitamin D naturally with UVB light. I have bought myself a short wave Vitamin D lamp and we are using it at present. I will let you know of our progress.

The other thing that is essential to CLL patients is that the make sure their food is high in nutrients, before I put my husband on a juicing and fresh whole food diet he used to have many infections, this was before he had CLL. He hardly ever has any infections now, which is ironic as you would expect him to be more prone to infections, he used to suffer with cold sores, caused by the herpes simplex virus, but he never gets any out breaks now.

Curcumin and green tea are also supposed to be beneficial in CLL patients, research it, being involved in you own well being is crucial.

I wont bore you any longer, I hope some of you find this information helpful.

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  • Hi and thankyou for your very interesting and thought provoking post. I've been reading quite a lot about the beneficial effects of Vitamin D but had always had concerns about possible toxicity (especially in the liver) of over-dosage. I would think it advisable to start Vitamin D supplements under medical advisement and only after tests for personal levels.

    Can anyone supply reliable up to date scientific and medical data on this subject? I read this informative article which seems to discount the theory of over-dosage and suggests it's impossible in our sun deprived climate and with our present lifestyles to have enough exposure to allow the necessary absorption of Vit D.

    guardian.co.uk/society/2012...

    Interested in the thoughts of others (but would only supplement on medical advice obviously).

    Newdawn

  • Hi I would like to tell you that you need very high doses of vitamin D for it to be toxic. my husbands haematologlist advised me to supplement my husband as I was more qualified than he on the therapeutic dosing of Vitamin D. When my husband had his level checked with his GP after my supplementation regime he was surprised by the levels i had managed to achieve. I have spoken to my husband's haematologist about the possible link between Vit D and not only CLL but other cancers such as breast, prostate, bowel.

    He now checks his patients levels of Vitamin D, but the amazing thing is that he doesn't recommend a supplement regime even when their range is dangerously low. The department of health have issued the directive to test for Vitamin deficiency, they are concerned about the effects on health this deficiency is causing which is not really a vitamin but a hormone. If anyone wants help or any information about safe levels of supplementation I would be happy to help. But I do agree that having a test to check your levels is advisable, because if you have very low levels there is a specific protocol your doctor should follow.

    In Canada they recommend everybody takes a supplement.

  • Yes your advice does seem to be supported by the medical opinions given in the link I posted najimghulam but as you say, it is important to have levels checked before embarking on supplemental treatment. I intend to ask my haemotologist about this when I see him next week as I don't think my Vit D levels have been tested.

    Wishing improved health for your husband who seems to be getting very skilled advice from yourself.

    Newdawn

  • The most recent study of vitamin D is based on 247,574 Copenhageners as test subjects. They found too little or too much has a negative impact on overall survival.

    So there is a 'sweet spot'.

    The optimal amount of vitamin D per litre of blood appears to be 50 nanomoles: at this level, the study found the lowest mortality rates.

    So get our serum VitD3 levels checked by our doctor. The test is called 25(OH)D

    Source

    jcem.endojournals.org/conte...

    This is behind a pay wall, but the abstract is a decent overview...

    CLL CANADA cllcanada.ca

  • the optimal levels is between 50 and 75 for fighting cancer. there are a lot of studies out there, correct me if Im wrong but was this study to see if Vitamin D is beneficial in combating the common cold? our immune system is a very complex thing, did you know that most of our immune system is in our gut, that taking anti-biotic kills gut flora, which then reduces our immune response. a little word of advice if you need to take anti-biotic follow it with at least a month of probiotics to replenish the gut flora. In France this is the standard treatment protocol. the doctors there issue the patient with a prescription of probiotics to take after the anti-biotic treatment. It makes sense.

  • najimghulam

    You should read the Mayo study...it is VERY CAREFUL to point out that they make no claims about VitD normalizing having ANY effect on CLL progression. This is a myth.

    Certainly, we need a certain level or VitD for bone health, but any effects on CLL good or bad is totally unproven.

    The study states...

    quote...

    'Because our observational study design does not provide definitive evidence for a causal relationship between lower vitamin D levels and poorer outcomes in CLL, it is unknown whether normalizing vitamin D levels in CLL patients with documented insufficiency would improve outcome. Previous observational findings exploring the potential effects of other vitamins on cancer prevention have not always proven beneficial in interventional studies.'

    Further....

    'In conclusion, our data provide the first direct evidence that 25(OH)D levels may be an important host factor influencing prognosis in CLL patients and, to our knowledge, it is the first study evaluating the effects of 25(OH)D insufficiency on cancer outcome to include a validation cohort confirming the results in an independent patient sample. The effect of 25(OH)D insufficiency on cancer outcome may be particularly relevant in CLL because it is a disease with a long natural history and patients are often observed for years prior to the initiation of therapy.

    Future studies dissecting the mechanism(s) through which the vitamin D pathway influences leukemogenesis, host immunity, and leukemia cell biology are needed and may provide insight into the mechanisms of disease progression that identify potential therapeutic strategies.

    Future trials evaluating the impact of vitamin D repletion in CLL patients with documented 25(OH)D insufficiency are needed to determine whether this strategy improves outcome in patients with CLL.'

    end quote...

    You can read the study here ...

    bloodjournal.hematologylibr...

  • There is something called probiotic sepsis...you need to be careful...CLL patients should take direction from their doctors only.

  • I read the study, in the study group only 2500 people had too much. it said that having to little was more detrimental to health, so checking levels and increasing levels is important. the probiotic sepsis is unproven, I think we should be concentrating on improving health naturally, replacing what has been destroyed and supplementing for deficiencies, of course you should seek the advice of your doctor, but also educate yourself, they dont know everything and no-one will care for your well being more than yourself, eat healthy food and be proactive in your own wellbeing

  • FYI...had a 2 year regression in CLL due to an exercise program and complete change of diet. In my case it was low glycemic index... coupled with daily walks

    Sorry...you are preaching to the choir...when treatment time comes you want to be in the best health possible...

    CLL CANADA cllcanada.ca

  • Interesting blog and thread najimghulam . Thank you for some of your insights and statements I agree knowledge is power and that educating ourselves, learning and being involved in our wellbeing is important to help us live with the disease. Exercise and a balanced diet seem to be very important. Reliable sources of information an important part too.

    Thank you for your links and clarification Chris.

    najimghulam Our Middle Eastern and Southern Hemisphere members may not agree with your summery of CLL incidence and it correlating to countries with low background UV levels. I found this interesting:

    CLL: Does Ethnicity Matter?

    Chaya Venkat October 13th, 2009

    updates.clltopics.org/1544-...

    I remember when looking into some of the areas you have brought up I found the colourful and qualified writings of CLL expert, Professor Hamblin very helpful and Chaya Venkat’s writings at CLL topics. Both have translated and interpreted scientific CLL information to help our understanding.

    It soon became clear to me that consulting with a qualified medic before embarking experiments with suppliments was important not just to protect my health but also my pocket. Much of what is available to read may be inconclusive and at best conflicting. Always work with your medic.

    Professor Hamblin wrote a lot about vitamin D and other CLL topics. Here’s a link to his interpretation of the mayo paper and the first page of links to articles that a Vitamin D and CLL search throw up

    March 2011

    mutated-unmuated.blogspot.c...

    Nick

  • najimghulam

    I hope you continue your quest of learning about CLL and I offer you some excllent resources below...

    UK Leukemia and Lymphoma Research Organization

    leukaemialymphomaresearch.o...

    The Leukemia & Lymphoma Society (LLS)

    lls.org/content/nationalcon...

    Lymphoma Research Foundations - The Red Book

    lymphoma.org/atf/cf/%7B0363...

    CLL management in the clinic.. 2012

    cllcanada.ca/2010/pdfs/Stat...

    CLL Treatment Guidelines (2008)

    bloodjournal.hematologylibr...

    Patient Power Videos ....CLL Experts

    patientpower.info/player/cl...

    ~chris

  • Very interesting! Do write in with any other bits of information you find out!

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