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Vitamin D

The link below is continuing evidence which leads me to strongly encourage CML patients to know their vitamin D status and to take supplements if below 60 ng/ml:

https://medicalxpress.com/news/2018-07-higher-vitamin-d-breast-cancer.html

Although the article deals with breast cancer - the genetic pathways are similar to CML - and besides, if you are a woman, this is important. Heck - if you are a guy who loves a woman this is important. Heck if you are a guy who loves people, this is important.

"There was an 82 percent lower incidence rate of breast cancer for women with 25(OH)D concentrations ≥60 versus <20 ng/mL (rate ratio [RR], 0.18; P = 0.006)".

As I have written many times before - vitamin D is an immune system activator. Without it, the body's defenses against cancer sit in the barracks and don't do anything. Cancer is free to run unchecked.

EVERYONE who is on this forum should have their vitamin D level checked and if low - take supplements (D3 variety) to get your levels above 60 ng/ml.

This is too important to ignore.

Well... some synchronicity here! I have just ordered the following book on very high doses of D3 by Jeff T Bowles

The Miraculous Results Of Extremely High Doses Of The Sunshine Hormone Vitamin D3 My Experiment With Huge Doses Of D3 From 25,000 To 50,000 To 100,000 Iu A Day

I have recently upped my daily dose even though I spent 3 weeks in the sun (on the lovely Greek island of Skopelos) - I felt so much better when I came home that I could only put it down to me being in the sun so I didn't want to lose that effect. In spite of the current UK heatwave, which is a wondrous thing, I am making sure that I keep my levels up by continuing D3 supplementation. 

A brief look at the contents of Bowles' book, tells me that we may have been encouraged to be scared of 'overdose' when supplementing with D3.

Sandy

 

It's very hard to overdose on vitamin D when staying within the dose limits of no more than 10,000 IU's per day. Also - taking vitamin K2 at the same time keeps D from getting out of whack in the first place:

https://www.healthline.com/nutrition/vitamin-d-and-vitamin-k

A best way is to have a vitamin D specific blood test so there is no guessing. Most people on this forum will likely find their vitamin D levels below 50 ng/ml. All CML patients should seek to get their levels higher than that.

Sandy - do you know your starting vitamin D level prior to supplementing? I suspect is was very low. I have met no CML patient on any forum who had high vitamin D levels AND developed CML. It does seem a low starting vitamin D level is needed in order for CML to get a foothold.

If only I knew then what I know now. But at least we can teach our children the importance of healthy vitamin D levels and cancer prevention. Cancer is treated best when prevented in the first place.

 

Hi Scuba we had Paul’s vitamin D checked and it was at 38ng/ ml.Any idea how much Vitamin D he  should supplement with to bring it closer to 60? He’s about 170 lbs. 

 

thank you , Louise 

For the first week, he should consider taking 10,000 IU's each day for 5 days to get a boost up. Take vitamin D3 + K2 together (K2 aka Menaquinone).

Then, In summer I take 5,000 IU's of vitamin D3 (any reputable brand) with food that has some fat (avocado, nuts, Gouda cheese, etc.). After 6 months get tested again.

(take it morning or mid-day - not at night).

In winter I take 10,000 IU's one day followed by 5,000 the next. I switch over in September and April.

I like to take my Sprycel all by itself, in the morning, and I take everything else at bedtime, including vitamin D3.  Why do you say don't take it at night?

Vitamin D is “inversely related to melatonin” (see link), so in theory could give you sleep problems. More details here, https://blog.bulletproof.com/bulletproof-your-sleep-with-vitamin-d/ 

David.

Thanks, David.  I guess I could take it alongside the Sprycel in the AM.  I'll try it and see if there's a sleep impact.

Good idea to take vitamin D '3' in the am or lunch.

when you take Sprycel is up to you. I take it at night because it gives me very vivid terrific dreams!

(no, I won't describe what kind of dreams)

Scuba, I did not have my D3 level tested at diagnosis nor since. I will ask for that to be tested at my next blood draw. However, since I have been taking high doses (when not in the sun I also add K2) minimum 5000iu daily, I have felt so much better. But reading a little of the book I mentioned I am definitely upping my dose to 10,000 iu a day and will see how I go- not only with CML but general health too.

After reading a little of the book I am not scared of supplementing with D3 - but making sure I include Vit K. Talking of dreams the books author mentions he has amazing -and positive - dreams since he introduced high doses. I am also trying to persuade my mum and dad - who both have very low levels of D3 - to overcome their fears and take more even only to protect against memory loss etc. 

Sandy 

Hi Sandy,

I am a big fan of vitamin D(3) ... but be cautious about taking too much. Blood testing is the only way to know for sure if you are in the sweet spot for vitamin D in the blood. For some people, they will need a lot of vitamin D just to maintain 50 ng/ml. For others, they won't need as much. It is very individual - likely caused by diet and sun exposure.

Below is a link to a video describing research that showed blood level around 70 ng/ml is ideal for cancer prevention/treatment as well as brain function (and a host of other functions as well). Going lower or higher decreases the benefit. In other words, vitamin D levels in the 80's, 90's or above has less benefit. 

It is probably very hard to get to those high levels on just 10,000 IU's per day - especially if you are taking vitamin K2 as well. There is evidence that hypercalcemia can result when vitamin D goes above 100 ng/ml. My personal goal is to stay below 100 and maintain around 70 ng/ml. I do that by taking 5,000 IU's in summer and 15,000 IU's every two days in winter.

So it's best to test so you know.

https://www.youtube.com/watch?v=-Za2H5oTXJY&feature=youtu.be

https://www.youtube.com/watch?v=RA5YOcZWDeY

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3684798/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/

 

I went to buy vitamin D3 as well as K2 from our local health store. The staff there are very knowledgeable and the guy who helped me is a nutritionist who works with patients with cancer. He advised since Paul’s vitamin D level was at 38 he should take 2x2000 iu a day and thought it would take 2 -3 months to get to a level of 60, which he thought would be s good target.  Told me to get him retested after 2 months. Also said best time to take it was at lunch time with fatty food like avocado, chicken etc. 

he said as your Vit D level level increases you need to take more to increase it further , but that for someone with a very low starting level, even 1000 iu daily would cause an initial jump.

 

so very grateful for this forum because without it we probably wouldn’t have asked for his level D to be tested in the first place , or know that 38 wasn’t high enough for someone with cancer. 

I asked if there was anything for low white blood counts,  but there isn’t. However he did mention a very expensive ( unless insurance covers it) treatment called  Neupogen. It’s a series of injections to be administered at home to patient by spouse etc. Is anyone familiar with this ? 

 

"I asked if there was anything for low white blood counts,  but there isn’t. However he did mention a very expensive ( unless insurance covers it) treatment called  Neupogen. It’s a series of injections to be administered at home to patient by spouse etc. Is anyone familiar with this ?"

 

Yes, I am very familiar with Neupogen - STAY AWAY FROM IT. Neupogen stimulates white blood cell production. Sounds good - yes? BUT - it stimulates leukemic white blood cell prduction also - which is why my doctor no longer uses it. Neupogen is for emergency only when life or death due to low WBC's is an issue. In your case, you have chronic low WBC's which will rise on their own with management. Do not take Neupogen.

This thread got me to check my test results and the last Vitamin D 25 Hydroxy test was back in 2013 with a result of 12.3 ng/mL; before that 2010 was 17.7.

I'm wondering why I didn't question this.  Wasn't diagnosed with CML until 2016.  Next PCP visit is next month which I will ask for a vitamin D test to see where I'm at now.

Will definitely order up some D3 and K2 supplements, just not sure on how much to take.

Thanks for posting!

... without knowing your blood levels and given your history - you are quite safe starting at:

1. vitamin D3 - 5,000 IU's per day taken with fat (cheese, meat, butter, eggs, etc.) morning/noon.

2. 200 mcg vitamin K2 per day taken at the same time with vitamin D3 (also fat soluble).

Vitamin K2 is NOT the same as vitamin K or vitamin K1. I tend to take vitamin K2 along with Japanese Natto (which is high in K2), so in effect, I get more than 200 mcg per day. 200 is a minimum amount.

Thanks Scuba!

Having started my vitamin D supplement about 4 months ago my latest blood tests indicate a level of 101nmol/L. Should I be pleased, panic, or just carry on!

Thanks

David

101 nmol/L is approximately 40 ng/ml.

1 ng/ml = 2.5 nmol/L

For maximum immune support benefit, the ideal range for vitamin D is between 50 - 100 ng/ml. I maintain mine around 70 ng/ml.

Your current vitamin D level is 'sufficient' for bone health (avoid Rickets), but not sufficient for best immune support.

No reason to panic. You could carry on - but getting your D level above 50 is best.

How much vitamin D3 do you take per day currently?

 

Hello Scuba

Many thanks for the reply. Ah, that’s very interesting. I have been taking 2400 IU per day for about 4 months after having a very low vitamin D level when I asked for it to be checked. It’s certainly greatly improved, but I shall not stop the supplement yet!

I was actually prescribed 800 IU a day by my doctor, but decided to up it to the 2400 level...

Hope all hoping well with you.

Best wishes.

David

Hello Scuba

Many thanks for the reply. Ah, that’s very interesting. I have been taking 2400 IU per day for about 4 months after having a very low vitamin D level when I asked for it to be checked. It’s certainly greatly improved, but I shall not stop the supplement yet!

I was actually prescribed 800 IU a day by my doctor, but decided to up it to the 2400 level...

Hope all hoping well with you.

Best wishes.

David

In your case, if it were me, I would take 5,000 IU's per day for a month in order to get my level up to the 70's.

Taking vitamin K2 (200 mcg) daily will insure vitamin D is used properly by the body in a synergistic way.

I take 5,000 IU's per day every day. In winter I increase my dose to 7500 IU's per day and my D level actually falls to around 50 during winter.

Testing and dose adjusting will give you knowledge on what works for you given your latitude, work/life style and body chemistry. In a few weeks I will be in the Bahamas. I will not be taking any vitamin D3 during those days. The sun will trigger plenty of synthesis to keep my level where it it.

That’s very interesting, thanks Scuba. I shall certainly up the dose and look into the K2 supplement also.

Ah the Bahamas, you lucky fellow!  Last time I was there I did a most interesting shark dive!

Out of interest, how do you test for your vitamin D levels? I have been getting them done with my 3 monthly blood tests/PCR etc. Is one able to self test?

Best.

David