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Vitamin D follow-up - **Update**

abrub's picture
abrub
Posts: 1537
Joined: Mar 2010

I was looking for the thread on vitamin D, because I promised to report back after my appointment with the specialist, which I had this week.

Ton Wednesday, I had my appointment with an MD who works in the Integrative Medicine department at Memorial Sloan Kettering. Dr. Wesa is conducting a study about Stage 4 colon cancer and vitamin D levels. Despite high levels of prescription vitamin D (50,000 iu twice a week, plus 2,000 iu of D-3 daily) my vitamin D levels remain low. I’m not eligible for her study, but she welcomed me as a patient.

She told me that research has shown that the D-2 form of vitamin D is not well-absorbed, and that is the one in the prescription D. D-3 is much better absorbed, and is found in most of the available supplements. Her research is with high levels of the D3, and she has found that she can normalize someone with 3 weeks of extremely high D (50,000 iu 3 times a week) whereas, the same quantity of D-2 would take months, if ever, to normalize.

Vitamin D is very important to track in colon cancer patients. Studies show that good levels of vitamin D (40 – 60 ng/ml) correlate with better outcomes. (My level has been in the 20s fsince they started testing, and I’ve been on at least 50,000 iu of D-2 weekly for over 2 years.)

I am currently on 20,000 iu of D-3/day (using D-3 from the vitamin section of my pharmacy) for 2 weeks, to be followed by 2 weeks of 8,000 iu/day. After 4 weeks, we’ll check my blood levels again for improvement. Ultimately, I’ll probably be on 5,000 iu/day as a maintenance level. My primary care was going to re-check in 6 months, because the formulation she gave me would have taken that long.

I’ll let you know how it goes. But if you haven’t had your D levels checked, please request it. Know that to supplement with 1,000 or 2,000 iu/day is reasonable. I would only go to the levels I’m now on while under a doctor’s supervision.

Alice

**** UPDATE *****

26 days after starting the revised protocol, and my D levels are in the normal range (50 ng/ml vs 29 ng/ml before.) After 2 years of taking extreme doses of D2, I'm thrilled that I've finally achieved an acceptable level on D3. I have yet to learn what level of D3 I will be using for maintenance.

I love good news!

Alice

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I've been low for quite some time, but I'm closing in on normal levels finally. I was on the prescription 50,000 IU for a while, just supplementing over the counter now. I'm really not very consistent with it, so I need to keep on top of it, now that fall is here and producing vitamin D naturally just isn't very likely. I know that a lot more attention is being paid to our levels from the new information that's coming out. That's interesting about the D-2 vs D3, I know my supplement is D3, it's a liquid 2000 IU.
mary

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Thanks for the info on D2 v D3. I'll be interested to see how your D levels go.

Annabelle41415's picture
Annabelle41415
Posts: 4358
Joined: Feb 2009

Never really had my Vitamin D checked until last year when my primary told me it was low and to take 1000 IU. Always noticed that my alkaline phosphate was also high and my oncologist told me this had to do with bones or liver function. Since taking the Vitamin D my alkaline phosphate has been in the normal range. I've always wondered if me having low Vitamin D caused my cancer. Sometimes such simple tests could prevent so many bad diseases.

Kim

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

My 25 year old son had a physical a few weeks back. They did a vitamin D level, said it was standard in their practice to do that. His came back quite low, so he is also on vitamin D supplements.

abrub's picture
abrub
Posts: 1537
Joined: Mar 2010

Low vitamin D levels have been associated with increased colorectal cancer, as noted below in an excerpt from the Memorial Sloan Kettering website on Vitamin D:

"Although reduced risk of cancer has been associated with increased vitamin D intake (24) (25) (26), data from a large, prospective study showed that with the exception of colorectal cancer, vitamin D may not protect against other cancers (27) (41). Similarly, data from the Cohort Consortium Vitamin D Pooling Project of Rarer Cancers (VDPP) epidemiological studies do not support the association between low levels of circulating vitamin D and reduced risk of non-hodgkin lymphoma (45), ovarian (46), kidney (47), endometrial (48), or oesophageal and gastric (49) cancers; however, a significant increase in the risk of pancreatic cancer was observed with high levels of circulating vitamin D (50)." http://www.mskcc.org/mskcc/html/69414.cfm

MSK has wonderful information available on botanicals and vitamins (http://www.mskcc.org/mskcc/html/11570.cfm) - well worth exploring

I'll keep you posted on my vit D progress. In the meantime, for those of you on the Rx D, make sure you are getting an additional 2,000 iu of D3 daily as well. Dr. Wesa has access to 50,000 iu capsules of D3, but it is only available to her study participants. The 50,000 iu capsules that are currently prescribed are D2.

maglets's picture
maglets
Posts: 2427
Joined: Jun 2006

thank you for all that D info.....I did not know that....going to check my D pills right now

mags

Kathleen808's picture
Kathleen808
Posts: 2316
Joined: Jan 2009

Thanks Alice. Great info.

Aloha,
Kathleen

Jaylo969
Posts: 826
Joined: Jan 2010

Has anyone else experienced queasiness while taking Vit.D? My doc tested me and I was "low normal" so had his nurse call me & tell me to take an additional 2,000 IU of D. With the D that is in my calcium tablets that made my daily D intake at 2,800 IU. When I started taking the extra D, after a few days I started experiencing nausea. First thought I had a little virus then when it didn't go away I started looking to the supplements I was taking. All were things I had been taking for many years EXCEPT the VitD-3 2,000. So, I quit taking it and a few days later the nausea subsided and has remained gone.

I hear that should not be a side effect of VitD. Was for me though. I do the same when I take Fish oil. Drives my Doctor nuts that the very things he wants me to take make me feel sick;(

Just wondering if I am the only one?

-Pat

pluckey's picture
pluckey
Posts: 471
Joined: Jul 2009

I recall my sister wanting me to get my Vitimin D level tested, as she read so much about it and the benefit for liver...My onc is not on the band wagon at all, she test it for me at my request and if I recall, it was on the lowest level for the acceptable/normal range.

Nana b's picture
Nana b
Posts: 3017
Joined: May 2009

I take 5,000 units of Vit D3, and my oncologist said he didn't know if I had to go to that extreme, so he probably doesn't about this study? I need to ask him.

nudgie's picture
nudgie
Posts: 1480
Joined: Sep 2006

I have also taken a multi-vitamin but added Caltrate D to my daily routine a few years ago.

I get 1800 IUs of Vit D daily and 1700 mg of calcium daily

Multi-vitamin in the morning and Caltrate D in the evening

lisa42's picture
lisa42
Posts: 3663
Joined: Jul 2008

Hi Alice,

I am following my vitamin D level also- interesting about the study. Ask the doctor in charge of the study what he thinks about spray under the tongue (nanoparticles) version of vitamin D-3. I too was taking vitamin D supplements in pill form for a few months awhile back & it was the D-3 version and I still had low levels when tested after a couple of months. It was then that I heard about a nanoparticle spray under the tongue version that is more readily absorbed. I first ordered mine from the dr.mercola website (but you can find it other places on the web too- I've never seen it in any health food store, though). Anyhow, after one month of using the spray with 6 sprays a day (6,000 IU, each spray being 1,000 IU), my level came up to 32 (it started at 13). After another month of using the spray, my level was up in the mid 50's.
Thanks for bringing this up- it still amazes me that some oncs don't know about the importance of vitamin D!

Lisa

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

D3 is recommended, and also that you take it with calcium. It is not absorbed well without calcium. D2 is not absorbed well - my oncology nutritionist told me right away to take D3 and calcium, not D2.

Of course the very BEST vitamin D is to get sunshine! But for many of us in climates too far from the equator, we don't get enough sun year round so supplements are recommended. I had my D tested last year and it was fine. I haven't had it checked recently. I think I'll ask for a re-check. But I've always spent a lot of time in the sun. In the winters (up until my dx last fall), I normally spend 2-4 weeks every 2-3 months in the sunshine in Mexico.

abrub's picture
abrub
Posts: 1537
Joined: Mar 2010

She advised me to get as much calcium as possible from dietary sources, as there is now some research that shows a higher level of heart attacks in people taking supplements. I'm therefore getting more milk and cheese into me, and cutting back to 600 mg Ca in supplement form/day. (She recommends Calcium Citrate.) Her feeling is also that if my diet is well balanced, I shouldn't be taking a multi-vitamin.

I haven't discussed the vitamin D spray with her. I know that she prefers that I take pills/capsules to the drops that I've been taking, as the dosage is more precise. I'll put that on my list of questions for her (but I don't want to email her every day.) My current D3 supplements have 5,000 iu per tablet plus 180 mg of Ca, so that is the bulk of my Ca supplementation.

Thank you for all of your feedback - I appreciate hearing how others are approaching this, and also learning what to ask.

Alice

tanstaafl's picture
tanstaafl
Posts: 1006
Joined: Oct 2010

My wife took two(2) 5000 iu D3 capsules per day for several months after surgery and was about at the lower end of desirable, 30 ng/mL vs 60 to 100 ng/mL cited by some vitmain D reseachers. She now takes three 5000 capsules per day, along with vitamin K2, magnesium and calcium. We monitor calcium levels for toxicity every 4-6 weeks, cheap, and I believe less uncertainty than with the vitamin D labs, which we plan to get once-twice per year.

I've seen at least two brands of 50,000 iu D3 capsules, over the counter/online. However I may consider getting vitamin D3 oil with 100,000 iu per mL, used drop wise, if it takes much over 20-30,000 iu per day to hit a target.

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi Alice,

Have you thought about consulting a Naturpath for better information about supplements ? It would appear what appears a highly selective approach (D's and Ca) are not considering all the other implications related to absortion, and other synegistic effects of diet and supplements.

Research outlined in one section of 'The China Study' showed populations with the highest consumption of Dairy i.e. milk and cheese, had the lowest absorbtion of Calcuim and hence the highest incidence of Osteoporisis and bone diseases. Why, because the way the proteins are digested causes a break down in the way calcuim is absorbed. This is just one many examples of where our popular belief and what we grew up with may not be quite so true.

I believe we need to fight cancer from every side and diet and nutrition are a vital part. You need all the parts of your body working, and working well to fight off the disease, so it is important to get all those parts working properly, not isolating one thing, as the body, when working properly can do amazing things, and we need it do just that to beat off cancer and prevent the dreaded recurrence, forever.

Regds
Scambuster

abrub's picture
abrub
Posts: 1537
Joined: Mar 2010

In 4 short weeks, by using appropriate doses of D3, my levels are now within the normal range. This could not be achieved for me with extremely high doses of D2; I required the D3.

Many have asked me about the recent articles on vitamin D levels and appropriate amounts to maintain bone health; research which seems to show that less D is needed than has been recently recommended. I asked Dr. Wesa at Memorial Sloan Kettering about that, and her reply was:

"The IOM (institute of Medicine) report was on the clinical trials, which are primarily from Osteoporosis research, so they did not have any data from the ongoing trials in cancer patients to include or any data to comment on. Most people are deficient in vitamin D not sufficient as stated by the IOM, and we have good studies showing that doses of 10,000 units daily for prolonged periods of time are not associated with side-effects, so I disagree with the IOM in many things they reported.

It doses not at all change my practice, except that I spend a lot of time explaining why their recommendations are not appropriate or why I disagree with their report..."

Happy Holidays,

Alice

Nana b's picture
Nana b
Posts: 3017
Joined: May 2009

I am taking 5000 units of D3, and I am still low.

abrub's picture
abrub
Posts: 1537
Joined: Mar 2010

I was put on 20,000 iu/day (D3) for 2 weeks, followed by 8,000 iu/day for 2 weeks. That brought my level from 29 to 50. I'm now on 5,000 iu/day for the next 4-6 weeks, until the next checkup.

Alice

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

I'm so hapy to hear that your levels are up at last! Congrats.

tanstaafl's picture
tanstaafl
Posts: 1006
Joined: Oct 2010

Wife's stage IIIc: Several months at 12,000+ iu vitamin D3 yielded a 30 ng/ml reading. After two months at 16,000 iu D3 and normal blood levels of calcium, raised to 22,000 iu. Taking D3 along with menaquinones, MK-4 and MK-7 (vitamin K2 isomers), magnesium and other trace minerals.

Hoping to hit 60-90 ng/ml, have seen various papers suggesting different optimum levels and limits, up to 100 and even one paper that suggested 120 ng/ml as possibly safe.

Will take another lab test or two of calcium and D3 over 2-3 months, and then decide next step.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

Will tell all my friends,
might as well get life saving xmas presents.
thanks,
Pete

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