101 replies to this topic

[scuba]

I'm wondering how many of us have had their vitamin D level's checked prior to or shortly after diagnosis and what the levels were?

 

I am asking because I am thinking that low vitamin D may have created an environment conducive to CML expansion and subsequent disease. It would be interesting if there are individuals on this forum who had high vitamin D levels (> 70ng/ml) at diagnosis or low vitamin D level.

 

In my case - I had very low vitamin D and didn't know it because I never tested for it and avoided the sun (with sun block), did not eat dairy that was vitamin D fortified. My vitamin D was 17 when I had a long overdue physical two years ago and they tested for vitamin D.

 

It is now over 70, brought up by taking vitamin D3 supplements (5000 - 10,000 IU's per day). PCRU correlates to when I started taking much more vitamin D3 to get my level up to 70 (I am aiming for 80).

 

I am just wondering if we CML people - enabled CML to get started because we were vitamin D deficient.

 

I am hoping that now that my CML is PCRU, that my Curcumin, vitamin D taking will keep it there without having to take Sprycel. 

 

It's just a hunch ...

[Gail's]

I live in rainy Oregon. Had vitamin d level checked a few years ag, almost undetectable. With supplements I was up to 40 a year ago, dr said it should run closer to 100. will ask for another test next week. Interestingly, there is research to support using bit d to halt progression of rumors in lymphoma patients. My moms oncologist verified this. She is now deceased but did pass from a bowel perforation while she was on rituxin another targeted drug for non-Hodgkin's lymphoma. She didn't take the bit d regularly since she was afraid of an overdose. She never had another test. Her rumors did grow but would quickly respond to rituxin. So not sure whether it would have improved her outcome or not.

[Gail's]

Wow lots of autocorrect errors in last msg but you should be able to get it.

[scuba]

Wow lots of autocorrect errors in last msg but you should be able to get it.

 

I got it ... so we have one person who had very low vitamin D (that be you, Gail) and developed CML.

 

Any others?
 

(I will be very interested to learn if someone had a high level of Vitamin D (over 70 ng/ml) and then was diagnosed with CML. It does seem that low D is necessary in order for the disease to start. I'm wondering if getting vitamin D up to high normal can help the body put the CML genie back in the bottle following TKI)

[Sneezy12]

Scuba-very interesting. Do you know of any scientific publications that indicate this? Thank you. Frank

[lsburris]

It is funny that you pose this question because this how I eventually got diagnosed with CML.  I had a routine blood test in the late summer of 2013 with nothing significant to report.  In February 2014 I had a pretty bad cold with fever so at the insistence of my dear wife I paid a visit to our family doc and she said my blood work from the summer had indicated a very low level of Vitamin D and she wanted to redo my blood work.  She ordered a few different tests including a CBC w/diff and you guessed it...ding, ding, ding...came back with a soaring high WBC count with some additional unusual "phils" of various kinds.  My doc called me the next day and said that my blood work was messed up and she wanted to redo it.  It came back the same of course and after a visit with Hemotology/Oncology the rest is history.  Officially diagnosed in April with CML.

[TeddyB]

I tested for Vit D around 2 months after DX, and it was very low. Dont know if that helps much since i measured it after starting Gleevec. I also had very low potassium at the time of DX. Taking Vit D supplements now.

[scuba]

Scuba-very interesting. Do you know of any scientific publications that indicate this? Thank you. Frank

 

Here's a few:

 

http://www.medicalne...cles/278323.php

http://www.lef.org/N...ty-Risk/Page-01

https://www.vitamind...-and-vitamin-d/

http://www.ncbi.nlm....les/PMC3809206/

 

I found nothing on CML specifically, just Leukemia and other cancers in general.

 

Just curious if there is anyone out there who had high vitamin D prior to diagnosis.

 

So far people are writing here that they were very low.

[Trey]

Not sure, but 3/4 of Americans have Vit D deficiency and CML is a fairly rare disease.  But that is not conclusive.

http://www.scientifi...-united-states/

[Billie Murawski]

Wow lots of autocorrect errors in last msg but you should be able to get it.

Gail, You hitting the sauce already, oh well it,s 5:00 o'clock somewhere.

[mlk210]

I'm not much help because I was vit d level 13 about 3 months after I started treatment. Which I had to ask my pcp to run myself. So, I don't think she regularly attached that test to my blood. Meaning I can't go back and see what it was prior to CML diagnosis. I do live in Chicago so not exactly a lot of sun here though!

[scuba]

Not sure, but 3/4 of Americans have Vit D deficiency and CML is a fairly rare disease.  But that is not conclusive.

http://www.scientifi...-united-states/

 

I did not write or suggest that low vitamin D is a cause of CML.

But perhaps for those who are "prone" to CML, is having a low vitamin D level an enabler that allowed the bcr-abl translocation to expand "unchecked" and become disease. 

 

My question is - Does anyone with high normal vitamin D levels (greater than 70 ng/ml) develop CML? And I further wonder if low vitamin D levels are restored, can the body recover its protective effect once TKI's have done their job.

 

So far - people who have responded here have all wrote that their vitamin D levels were very low as was mine. I am curious if anyone out there has very good solid vitamin D levels and also developed CML. This is not scientific by any means, but it is interesting.

 

(on the side: I am two weeks into my cessation "test". I have not taken any Sprycel. My energy level has increased dramatically - strange that I did not feel that I was low energy before, but it is definitely higher now. I do suspect that my chronic low red blood count is reversing and perhaps that is why I am not "tired" when exercising. My vitamin D level is way up (and has been for a year or so) and I continue to take 8 grams of Curcumin. I know I needed two years of PCRU before starting this cessation test, but with Trisomy 8 and drug unknowns, I wanted to test how my body and the CML responds to no TKI at this point intime. Dr. Cortes is real curious too, but absolutely did not encourage me to do this. But he is willing to test more often and to watch. We will take this one month at at time. Should PCR pop up (and I half expect it will), back on the Sprycel I go. But if it doesn't pop up ... how glorious to go another month drug free ... and then ... maybe another month and then another month. I've gotta try.)

[scuba]

Hi,

I was told by my GP that I should start taking Vitamin D several years ago because I had lower then normal levels, I took the vitamins for a while but subsequent blood tests showed no improvement in my levels, so I stopped taking the vitamins. For what it's worth there's my 2 cents CML diagnosed less then a year ago.

 

In winter, I take 10,000 IU's vitamin D3 per day. In summer I take 5,000 IU's per day. I test twice a year to make sure I am getting enough and not overdoing it. I have a tough time keeping my level above 60! So I have increased my dose. You want your vitamin D level to be over 70 and less than 100. Normal is considered between 50-70, but we're not normal, we have CML. So I want to be on the high side of normal. If you were out in the tropical sun for a few hours per day at noon, you would have 80ng/ml of vitamin D. So to me - 80 is the normal.

 

This is what I take: http://www.amazon.co...s/dp/B0037LOLKY - but any reputable brand should work.

[scuba]

Hi,

And you live in Texas,

I am stuck indoors most of the winter and the days are so much shorter up north. It's dark when I arrive at work and dark at 4:PM in December. Very hard to get a lot of sun. I think I am going to follow your lead and go back on the Vitamin D.

 

Vitamin D3 is the active form. You should get a vitamin D blood test (there are kits you can buy for home testing). Aim to get your D level up around 70, but stay below 100. There is debate on what constitutes an ideal level. I prefer to be on the high end of the normal range. Taking vitamin K2 along with vitamin D will practically eliminate vitamin D overdose, however. vitamin K2 uses D to create  the active form of Matrix GLA protein. Matrix GLA protein is what scavenges Calcium from soft tissues (i.e. arteries) and puts it into bone. Women who take vitamin K2 and D avoid Osteoporosis, for example. After I started taking K2 (mostly from eating Natto as well as supplements) along with D, my carotid artery calcification level dropped 46% in one year. Remarkable given that my father died from stroke involving the carotid artery.

[Gail's]

Wow, scuba, that's an impressive drop in carotid artery calcification. Will check out k2. It's a vitamin supplement, right?

[scuba]

Wow, scuba, that's an impressive drop in carotid artery calcification. Will check out k2. It's a vitamin supplement, right?

 

Yes - it can be a vitamin supplement, but I also eat Japanese Natto (acquired taste). Natto is loaded with vitamin K2. Not surprisingly - older japanese women do not have osteoporosis. I get about 600 or so mcg of K2 a day most days when I eat Natto (5-6 days a week). Otherwise I take 2-3 K2 pills (200-300 mcg). My dramatic reduction in artery calcification was due, in large part, to the Natto I am eating. I suspect the vitamin only regimen would help keep me where I am (not add to artery calcification). I do not eat Natto when I am traveling. K2 is fat soluble, so take it with food that has fat (like cheese, walnuts, etc.). K2 has a long half-life in blood, so once you start taking it you will be building up a blood level which will be protective.

 

If you take K2 - you need to be sure you have adequate vitamin D. D and K2 work together (the body makes GLA Matrix protein using these vitamins which is what scavenges calcium out of soft tissue).

 

Here is a link for the one I take: http://ecx.images-am...-lL._SY606_.jpg

 

Vitamin K2, Mk-7, Menaquinone - it's all the same thing. K2 is NOT K1 is NOT K. It should have been given its own letter.

[DebDoodah22]

Low D before and since. Prior to dx I supplemented and still ran low, not sure there is a relationship but it's interesting to consider. Also, exciting to read of your increased energy levels Scuba. Lack of energy is a very menacing side effect. Hope your tests show good result.

[scuba]

Low D before and since. Prior to dx I supplemented and still ran low, not sure there is a relationship but it's interesting to consider. Also, exciting to read of your increased energy levels Scuba. Lack of energy is a very menacing side effect. Hope your tests show good result.

 

Thanks - we'll see. This is a big experiment for me trusting my own judgment over the Oncologists. The establishment says don't do this. But the establishment also tells us eating eggs bad - now eating eggs good. Taking Statins good - now maybe not so good. I know enough about CML having lived with it, read up on it, and share here in this forum to be able to make an informed decision. I don't fear CML. I understand it. Not perfectly, but close enough to feel I know what may happen and what I am doing.

 

It's 50-50 in my mind that my PCR will remain little changed (and "undetected" for CML). I think it is entirely possible that I will have lost response and have to go back on Sprycel. But I also believe that if I have to go back on Sprycel, I will regain response and get back to my new normal in short order. Whatever clones were there were always there since Sprycel doesn't affect them anyway, hence my lack of fear that my CML will mutate because I didn't take Sprycel for a few weeks. My hope is that my body, with better nutrition than ever, has a much stronger immune system to keep CML in check. Even if its for a few months more. Not taking this drug has been a terrific feeling. 

 

I do admit my wife is worried that CML will come roaring back. I told her the only thing to come roaring is me...come to think of it .... where is she...I need to go find her ....

 

Later ....

[gerry]

Hi scuba,
If you don't try, you won't know.

[Billie Murawski]

She's probably going to put you out to pasture!