101 replies to this topic

[JPD]

Scuba - what does CML have to do with Vitamin D?  Im sure you may have said, but Im trying to look at this on my phone

[scuba]

Finally after 3 months I was able to talk my GP into a 25(OH)D test after my onc refused to order one. As suspected from reading here, my vitamin D level is 11!  Doing a little research on dosage before I start a regimen along with K2. Already spoke to the onc about supplementation. He says it won't do any good, but if it makes me feel like I'm doing something positive to go ahead...gosh, there should be a doctor out there who is not so black and white about stuff and willing to work with us a little. I am a true believer that you need to be your own health advocate. Thank God for the internet!

I am 3 weeks into Gleevec, so don't know how much that affected the result.

 

My vitamin D was 17 when I first had it checked. I have no doubt I have been very low for a long time. Enough time to 'enable' CML to expand? Who knows. But I did reach PCRU for the first time ONLY after I started a program to get my level up to high normal. Will I retain PCRU/MMR even though I gave up Sprycel? I'm 50-50 on that and would not encourage anyone to give up their drug without confidence they know what they are doing and can handle risk (psychological mostly). I am testing whether getting my CML under control (no blasts, PCRU) and taking nutritional supplements such as Curcumin, D3/K2 and eating better will make a difference.

 

There are lots of people with low Vitamin D out there who don't get CML. Perhaps they're just lucky that no trigger triggered the mutation - or that their immune systems are strong enough to deal with it naturally. No one knows. So my approach has been to get on the right side of what we currently know and use that knowledge. It is scientifically reported that Vitamin D plays a big role in our immune system - including activation of T-cell and NK cells - precisely the cells that defend against proliferating cancers as well as infection. It is also known that vitamin D activates leukemic blast cells to differentiate. We know these things. So I simply applied what I have learned and got my vitamin D level the heck up. NO one has reported having a high normal vitamin D and then getting diagnosed with CML according to our non-scientific polling. Everyone who reported their vitamin D level - reported below normal - many, way below normal (such as my level).

Coincidence?

 

It is important to not over do it. More is not better. I am actually cutting back on my vitamin D3 dose now that summer is approaching (Texas sun is already high in the sky). I don't take it every day. More like 5 times a week (5,000 IU's). And I will test in a few months to verify that my level is not rising more than where it is (and certainly not falling). Vitamin D3 is fat soluble - so you are building reserves when taking supplements. Vitamin D half life is 8 weeks. So if I stop taking vitamin D3 and avoid the sun or food with vitamin D, my D level would reduce by half in two months. Keep that in mind when taking supplements. More is not better.

 

Once at the level you want - then cutting back is the right thing to do. Also - read up on vitamin D toxic symptoms and be aware of them. I find that taking vitamin D3 with K2 (as well as eating carrots) keeps my vitamin D level steady so far (even though I upped my vitamin D dose during the winter) because K2 uses vitamin D to make the proteins that scavenge Calcium out of our arteries and soft tissue. 

 

The sun is the best way to get vitamin D - but not all of us live like our ancestors around the equator. So I am supplementing - and envisioning my Natural Killer cells and T-lymphocytes going after CML. It certainly is no cure otherwise people would simply take vitamin D and "be cured". But what if - in conjunction with our TKI's and other possible agents, we can get control over CML? That is what I am testing. If it doesn't work, I simply go back on Sprycel. But I have a hunch ...

[scuba]

Scuba - what does CML have to do with Vitamin D?  Im sure you may have said, but Im trying to look at this on my phone

 

See my post to Snowboots...

[JPD]

okay, thanks for that - what about curcumin?

[scuba]

okay, thanks for that - what about curcumin?

 

I take 8 grams of Curcumin every day. 2 grams at a time.

It's done wonders for my joints so I don't even think of it with respect to CML. Although CML research is what led me to discover Curcumin.

[jmoorhou]

I spent a lot of time laying in the sun for two years before I got CML.  I "retired" and was living near a great pool.  I actually was thinking it was the radiation from the sun that caused the CML.  

 

I only used sun block on my face.  And I'm fair skinned....

 

Really you Scuba, hope you succeed....

[JPD]

so what about CML research and curicumin?  Im looking for anything to help the cause.  Ive been taking my Tasigna with a bit of lemon juice since Trey says it likes acidic environments.  Ill sit naked in the street if it'll help the TKIs.... but no one wants THAT.

[scuba]

I spent a lot of time laying in the sun for two years before I got CML.  I "retired" and was living near a great pool.  I actually was thinking it was the radiation from the sun that caused the CML.  

 

I only used sun block on my face.  And I'm fair skinned....

 

Really you Scuba, hope you succeed....

 

I SCUBA dive and was in the sun a lot - but still my vitamin D level was real low. 

Unless you are tested, you just don't know.

[scuba]

so what about CML research and curicumin?  Im looking for anything to help the cause.  Ive been taking my Tasigna with a bit of lemon juice since Trey says it likes acidic environments.  Ill sit naked in the street if it'll help the TKIs.... but no one wants THAT.

 

Please ... for the sake of Trey, don't sit naked in the street.

[Trey]

Since there have never been tests to determine how much Vit D a person needs, how does anyone know what is too little?  If you get none, there are consequences, but otherwise no one knows.

Edited by Trey, 03 April 2015 - 07:26 PM.

[scuba]

Since there have never been tests to determine how much Vit D a person needs, how does anyone know what is too little?  If you get none, there are consequences, but otherwise no one knows.

 

Levels below 16ng/ml gives you rickets. Levels less than 30ng/ml are associated with weak bones and osteoporosis. Levels between 30-50ng/ml are considered normal. 

[Billie Murawski]

JPD,  At least I go to the zoo.

[Trey]

Scubs,

When you had low Vit D did you have rickets or weak bones/osteoporosis?  Part of the problem is that measurement processes are inexact. They are just guesses.  The only people with confirmable "low Vit D" are hyper vegans who live in a dark corner of their bedroom closet.

[scuba]

Scubes,

When you had low Vit D did you have rickets or weak bones/osteoporosis?  Part of the problem is that measurement processes are inexact. They are just guesses.  The only people with confirmable "low Vit D" are hyper vegans who live in a dark corner of their bedroom closet.

 

I had bone pain (especially in the legs/hips) and muscle weakness which I attributed to the TKI, but the symptoms faded as I increased my vitamin D levels even while continuing to take Sprycel. Could have been I just got used to Sprycel. 

 

http://ajcn.nutritio...87/4/1080S.full

 

There is enough data and studies on vitamin D to encourage me to take a supplement in Winter and test to verify my levels are in the high normal range. In the summer, it's not as critical since the half life of vitamin D is 8 weeks. 

[JPD]

I love the Scuba v. Trey back and forths. 

 

I picture two elderly Victorian age intellectuals smoking herrigbone pipes and sipping Earl Grey - "tut-tutting" eachother and saying things like "balderdash" and "poppycock".  Dust motes migrate before the windows as white gloved servents stand sentry waiting to refill their gold-laced teacups. The only other sounds in the room are the regular beats of the grandfather clock and the sound of a slight wind coming off the Thames.  The room smells of pipe tobacco and leather bound books (and a bit of body odor, it IS the Victorian era after all).  And, maybe, sharts.  It might also smell of sharts.

[scuba]

I love the Scuba v. Trey back and forths. 

 

I picture two elderly Victorian age intellectuals smoking herrigbone pipes and sipping Earl Grey - "tut-tutting" eachother and saying things like "balderdash" and "poppycock".  Dust motes migrate before the windows as white gloved servents stand sentry waiting to refill their gold-laced teacups. The only other sounds in the room are the regular beats of the grandfather clock and the sound of a slight wind coming off the Thames.  The room smells of pipe tobacco and leather bound books (and a bit of body odor, it IS the Victorian era after all).  And, maybe, sharts.  It might also smell of sharts.

 

JPD - Are you kidding me? "balderdash". Tea? I don't think so.

 

Montecristo #3 especial white and a dram of XR21 Johnnie Walker - Thank you.

 

Trey, on the other hand - doesn't even know where the Thames is located let alone know of a Mr. Earl Grey. 

[klf2013]

I love the Scuba v. Trey back and forths. 

 

I picture two elderly Victorian age intellectuals smoking herrigbone pipes and sipping Earl Grey - "tut-tutting" eachother and saying things like "balderdash" and "poppycock".  Dust motes migrate before the windows as white gloved servents stand sentry waiting to refill their gold-laced teacups. The only other sounds in the room are the regular beats of the grandfather clock and the sound of a slight wind coming off the Thames.  The room smells of pipe tobacco and leather bound books (and a bit of body odor, it IS the Victorian era after all).  And, maybe, sharts.  It might also smell of sharts.

Where is the "LIKE" button!!! I need the LIKE BUTTON!!!

[klf2013]

Hi Scuba,

 

I had my Vit D level checked on Friday and found out it is 16.8.Yikes!  SO I am trying to figure out what dose to start on, and my next course of action. I am interested to take the K2 as well, but if I am understanding the literature correctly, I need to get my Vit D level up to a better level prior to adding in the K2. 

 

My Sprycel has made me sensitive to the sun, so even when I am out in it in the summer, I am wearing spf 50.  To your question, I have no idea what my level was prior to my CML diagnosis a year ago.  That doesn't help your research. 

 

If you could tell me in your experience what dose I should start with and how often to check blood levels I would appreciate it. I was thinking I would just ask my oncologist to run the Vit D level every 3 months with my other bloodwork, but that might be too often, not sure. I am interested in curumin as well, but my platets are at 85...I am a little hesitant to try that one just yet.

 

Thanks so much!

[scuba]

Hi Scuba,

 

I had my Vit D level checked on Friday and found out it is 16.8.Yikes!  SO I am trying to figure out what dose to start on, and my next course of action. I am interested to take the K2 as well, but if I am understanding the literature correctly, I need to get my Vit D level up to a better level prior to adding in the K2. 

 

My Sprycel has made me sensitive to the sun, so even when I am out in it in the summer, I am wearing spf 50.  To your question, I have no idea what my level was prior to my CML diagnosis a year ago.  That doesn't help your research. 

 

If you could tell me in your experience what dose I should start with and how often to check blood levels I would appreciate it. I was thinking I would just ask my oncologist to run the Vit D level every 3 months with my other bloodwork, but that might be too often, not sure. I am interested in curumin as well, but my platets are at 85...I am a little hesitant to try that one just yet.

 

Thanks so much!

 

When I had my vitamin D level checked the first time (ever) - it was similar to yours at 17 ng/ml. My primary doctor put me on 50,000 IU's of vitamin D3 a week for six weeks. It raised my level to around 40 ng/ml. My level is currently at 55 and I continue to increase it until it steadies at 60-70 where I want to maintain it.

 

A friend of ours who beat breast cancer through nutrition alone (did not elect chemo or radiation following lump removal) takes 5,000 IU's one day followed by 10,000 IU's another every day regardless. Her vitamin D level is around 70 ng/ml currently. She is amazingly healthy as she is beautiful.

 

My own approach is to take 10,000 IU's per day in the winter and then reduce to 5,000 IU's per day in the summer and then zero if I find myself on a big boat out in the Caribbean (NEXT WEEK!) where I can go topless and let the sun do its thing.

 

You should consider taking some form of vitamin D3 supplement (stick with a major reputable brand) right away with food (that has fat so it absorbs into your blood). You should test again in 3 months. 50,000 IU's per week is reasonable to get your level up.

 

Also - I recommend finding a primary care "wellness" physician to monitor your overall health. It was my wellness doctor who checked my vitamin D level and told me it was way too low. And he guided me getting the level up. He also checks homocysteine and C-reactive protein (inflammation markers) as well. But vitamin D was the big one.

 

Trey disagrees with this (probably because he didn't come across it first) that vitamin D has any impact on CML. But I only reached PCRU once I my vitamin D achieved 50 ng/ml. And I have been off Sprycel for two months so far without a change (in PCR). Is it the vitamin D? Perhaps. Is it the Curcumin? perhaps. It's probably a combination of better nutrition using "all of the above" tied to immune response. If I continue PCRU for another 10 months - I'll be a believer.

 

You're the team leader - the boss. Your doctors work for you. Build your team. Oncologists don't do vitamins/wellness. Primary doctors don't do Leukemia. You have to put it together yourself in a custom fashion for your health. I wish I knew these things 30 years ago. I may have avoided CML.

 

(note: If my PCR does jump up (1/2 to 1 log) and I have to go back on Sprycel - then I will conclude that nutrition is good for your body and cancer is cancer and luck of the genes. I am only 50-50 on my experiment yielding success - half expecting my PCR to jump at next test. But I am hopeful that my experiment pays off and I beat this thing through grit, will, determination and knowledge - especially knowledge and lack of fear.)

[klf2013]

When I had my vitamin D level checked the first time (ever) - it was similar to yours at 17 ng/ml. My primary doctor put me on 50,000 IU's of vitamin D3 a week for six weeks. It raised my level to around 40 ng/ml. My level is currently at 55 and I continue to increase it until it steadies at 60-70 where I want to maintain it.

 

A friend of ours who beat breast cancer through nutrition alone (did not elect chemo or radiation following lump removal) takes 5,000 IU's one day followed by 10,000 IU's another every day regardless. Her vitamin D level is around 70 ng/ml currently. She is amazingly healthy as she is beautiful.

 

My own approach is to take 10,000 IU's per day in the winter and then reduce to 5,000 IU's per day in the summer and then zero if I find myself on a big boat out in the Caribbean (NEXT WEEK!) where I can go topless and let the sun do its thing.

 

You should consider taking some form of vitamin D3 supplement (stick with a major reputable brand) right away with food (that has fat so it absorbs into your blood). You should test again in 3 months. 50,000 IU's per week is reasonable to get your level up.

 

Also - I recommend finding a primary care "wellness" physician to monitor your overall health. It was my wellness doctor who checked my vitamin D level and told me it was way too low. And he guided me getting the level up. He also checks homocysteine and C-reactive protein (inflammation markers) as well. But vitamin D was the big one.

 

Trey disagrees with this (probably because he didn't come across it first) that vitamin D has any impact on CML. But I only reached PCRU once I my vitamin D achieved 50 ng/ml. And I have been off Sprycel for two months so far without a change (in PCR). Is it the vitamin D? Perhaps. Is it the Curcumin? perhaps. It's probably a combination of better nutrition using "all of the above" tied to immune response. If I continue PCRU for another 10 months - I'll be a believer.

 

You're the team leader - the boss. Your doctors work for you. Build your team. Oncologists don't do vitamins/wellness. Primary doctors don't do Leukemia. You have to put it together yourself in a custom fashion for your health. I wish I knew these things 30 years ago. I may have avoided CML.

 

(note: If my PCR does jump up (1/2 to 1 log) and I have to go back on Sprycel - then I will conclude that nutrition is good for your body and cancer is cancer and luck of the genes. I am only 50-50 on my experiment yielding success - half expecting my PCR to jump at next test. But I am hopeful that my experiment pays off and I beat this thing through grit, will, determination and knowledge - especially knowledge and lack of fear.)

Thanks Scuba. I am emailing my GP now to call her attention to the result, tell her what I would like to do, and see if she has any other suggestions.   I fell like a wellness team is a better approach, and although I love my oncologist....he is not a huge believer in nutrition. (not surprising). Not sure that my GP is either, in which case, I need to find someone who is!!!!!!!!! I really feel the power of nutrition is severely underestimated in wellness in general.  As a school nurse, I look at these kids and they look so unhealthy, but I guess when everything you eat, all the time is processed....that happens.  I will be watching how you progress with great anticipation...hopefully you are setting a very impressive course!!

Thanks Again,