Vitamin D Associated with Longer Treatment-Free Survival in Early CLL

[Edalv]

Vitamin D Associated with Longer Treatment-Free Survival in Early CLL

This study looked at the impact of vitamin D supplements for patients in the watch and wait period of CLL.

cllsociety.org/2024/10/vita...

[LeoPa]

Beginner's luck. I started regular full body Sun exposure in 2012 being aware of the importance of vitamin D for immunity while having no idea about a CLL diagnosis coming my way. Off season I take 2000 iu daily. 14 years (hopefully more) in W&W looks good from where I look (5 years in). Reminder to my US friends: pls vote! This one is important. Good bless America.

[BigfootT]

I find this study interesting.

I started taking Vitamin D at 2000 IUs /daily in Sept 2018 when I was diagnosed as insufficient. This was 5 1/2 years before my CLL/SLL diagnosis. This raised my levels from the mid-20s ng/mL to the mid-40s where they have stabilized.

Since my SLL diagnosis in Feb 2024 my blood work has improved and my nodes have only slightly enlarged. My markers are IGHV unmutated, Trisomy 12 and Notch 1 mutated. My specialist expects some aggressive progression, but so far she's encouraged by the boring nature in this early stage of W&W.

I wonder if my daily Vitamin D delayed my inevitable CLL diagnosis or has slowed the TTFT as this study suggests.

None the less, this is good news and I intend to continue my daily regiment.

Thanks for sharing. Bigfoot

[AussieNeil Partner Administrator]

More discussion on this important matter in reply to this post about the link back in August healthunlocked.com/cllsuppo...

Per that post, this community has included mention of the importance of having vitamin D in the healthy range in our pinned post section for the past 10 years

From, with my emphasis, Original Coping strategies for Living with CLL - Part 1- Making good use of "Watch and Wait".

healthunlocked.com/cllsuppo...

* Get blood tests for VIT B AND VIT D. Low levels of these are surprisingly common, and can usually be rectified with supplements. Boosting them into normal levels can make a lot of difference to fatigue (though some people cannot absorb Vit B12 orally and it needs to be via injections.) Vitamin D may possibly slow the progression of CLL. (Stay tuned for the results of a Mayo Clinic study on this.

Further to the posted CLL Society article, On the CLL Society website, there's an associated article where Dr Koffman interviews Drs. Tait Shanafelt and Sameer Parikh about the research PaulaS referenced by them that had been discussed in our community way back in March 2015!

cllsociety.org/2024/10/more...

Note the Discussion and Conclusions:

"In this well-designed study, we have good evidence suggesting that vitamin D supplementation taken earlier may significantly improve outcomes in CLL patients. We need to know more about the characteristics of which CLL patients might benefit most. For example, will it be those at high or low risk based on their prognostic markers? Also, because blood levels of vitamin D were not tested, we importantly don’t know if the benefit was only seen in those with low levels, to begin with, who were made replete by supplementation, or whether vitamin D might be effective in all patients.

Regardless, this is certainly encouraging research that supports the fact that a simple, inexpensive, and generally very safe early intervention can have a powerful positive impact on improving outcomes in those with chronic lymphocytic leukemia."

Neil

[CBSN]

Diagnosed in April of this year (W&W) and did come across the Vitamin D and Vitamin B literature and asked to get it tested. D was at the very very low end of normal range. I asked my doctor about it and she said to take no more than 1,000 IUs/daily. Seems like many of us are taking more. What did your doctors say about min/max vitamin D supplements per day and why?

My main reason for inquiring was seeing if it would impact my energy in a positive way.

[Edalv in reply to CBSN]

When I first tested for vit-D I was bellow 30 ml, that was over 12 years ago, I don’t remember exactly when. I first started at 1000 units per day, but then increased to 2000 units a day once I didn’t have any adverse effects. My current protocol is to take 2000 units every day, and I increase to 4000 units during the dark cold winter months, since I live above the 40th parallel we get little sun light. I have my doctor check the vit-D levels regularly because I don’t want to go above the 100 ml threshold where it can became a problem…

[AussieNeil Partner Administrator in reply to CBSN]

According to A Predictive Equation to Guide Vitamin D Replacement Dose in Patients

medscape.com/s/viewarticle/...

Methods. We reviewed the response to vitamin D supplementation in 1327 patients and 3885 episodes of vitamin D replacement and attempted to discern factors affecting the response to vitamin D replacement by conducting multiple regression analyses.

:

Significant factors affecting the change in serum concentrations of 25-hydroxyvitamin D, in addition to the dose administered, are:

(1) starting serum concentration of 25-hydroxyvitamin D

(2) body mass index (BMI),

(3) age, and

(4) serum albumin concentration

This was not a study of low vitamin D in CLL patients, but it shows that one dose doesn't suit all.

Neil

[Edalv in reply to AussieNeil]

There are too many factors that affect the levels of vitamin D, such as diet and sun exposure. So it’s very important to have the levels checked before determining the appropriate dosage to take.

[bennevisplace in reply to CBSN]

If your vit D levels are very low you will need to take much more than 1,000 IU / day to see an improvement any time soon. In the UK and in the US the official recommended safe limit is 4,000 IU nhs.uk/conditions/vitamins-.... ods.od.nih.gov/factsheets/V... Some people need to take more than that to maintain adequate serum levels of vit D. We're all different.

[BigfootT]

My doctor recommended 1000 -2000 IUs per day. I went with 2000. My next blood test showed my levels right in the middle of the normal range. I've continued that and have never seen my numbers at the high end (80 ng/ml) of normal. Pretty much stable at 40-45.

[bennevisplace]

Thanks for posting this link.

It's worth a few minutes to watch the video discussion between Dr Brian Koffman and a hematology researcher from Mayo, where they have been running a vit D study in CLL patients for several years, though apparently failing to surmount the ethical barrier to create a valid control group.

The hematologist called the results of this latest trial "suggestive", which I take to mean "interesting but needs further, corroborative studies".

In this interview, Brian K said that he has to supplement with 5,000 IU / day to maintain adequate vit D levels.

Neither of the two was aware of any published evidence that CLL patients tend to be more vit D deficient than their counterparts in the general population.

[Ashlar677]

My brother-in-law developed AML, his vitamin D level was super low, so I asked my GP to check my vitamin D level and mine was super low as well (I developed CLL Feb 2018 started imbruvica in 2020.) I discussed the levels with my CLL specialist. I was told to take 1000 IU, my levels went up a little but remained low, the specialist told me to increase my dosage. The specialist also told me to include vitamin K (to assist the body in absorbing vitamin D. My levels are good now. I also take Vitamin B. I was tired most of the time and often needed a short nap in the afternoon. I have been taking Vitamins D, K, and B for a couple of years and my tiredness and fatigue has gotten a lot better, I can make it through the day without the fatigue. Until I brought it not one doctor discussed the D levels with me. Talk it over with your specialist. Luck Joe

[Vlaminck in reply to Ashlar677]

I too discovered I had super low vitamin D level -- also not from any doctor but through an incidental group of "life screening" test. Of course, started supplementing, but it was the following year that I started showing signs of what I think was the beginning of my CLL, and I do not doubt that my low level the year before (or years before) may have triggered it.

[Brambles_Mum]

You should never supplement high dose vitamin D without taking K2 and magnesium!

The K2 is needed to direct calcium into the bones and away from the soft tissues/arteries and magnesium is needed to 'activate' vitamin D.

I take 5,000ius a day (all year round, especially as we don't get much sun here in the UK!!) with around 400ius of K2 and make my own magnesium oil.

[Edalv in reply to Brambles_Mum]

Good advice, vitamin D needs to be complemented with vitamin K2…

[bennevisplace in reply to Edalv]

I take K2 with D3 on the advice of a "Heilpraktiker". It seems to be in the foklore, but is there any solid evidence for the supposed synergy between the two supplements? i.e. a randomised trial. I've only seen a meta analysis which was inconclusive pmc.ncbi.nlm.nih.gov/articl...

[CBSN in reply to Brambles_Mum]

I also live in a sun-deficient region of the US (at least in the winter time). My K is normal though, and my D technically within the normal margin. Do you suggest K2 is still essential for my case?

[Edalv in reply to CBSN]

You should discuss that with your doctor, I have a functional medicine doctor. He is more open to discuss not only my prescription needs but also he reviews my supplements requirements.

[CBSN in reply to Edalv]

Having functional medicine doctor is a great idea! Been wanting something just like that, but didn't know the correct language to use when finding one.

[bennevisplace in reply to Brambles_Mum]

You're the second CLL patient I've heard of this week taking 5,000 IU / day, which is 25 % more than the maximum daily dose recommended by the NHS. Presumably you monitor your serum D level and keep it close to optimal?

[Brambles_Mum in reply to bennevisplace]

The maximum recommended dose the NHS state we should take is way too low!

But no I don't monitor my serum D level but only because it's difficult to get tested unless you do it yourself which I can't really afford to do!

So I go by how I feel and generally hope for the best, though if anything I think I would still be quite low/have average levels because there is no sun and if you're out in the sun (for long enough/right part of the day/time of year and with enough skin uncovered), you would be getting more than 5,000 ius of D! Plus because I take K2 with it, it does help with any possible toxicity.

Ideally though, if it was easier, I would get tested quite regularly.

[bennevisplace in reply to Brambles_Mum]

Maybe if you make a case your GP will say yes? My wife has had her D level measured a couple of times (for no special reason) and I'm pretty sure UK members of the CLL group have said similar.