Vitamin D Levels

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hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Vitamin D Levels

Postby hart2hart » Tue Apr 22, 2014 8:17 pm

Hi -

I had Pete's Vitamin D level tested this week.

Seems kinda low ---- 27 (range 25 - 80)

Thoughts on this?

Thanks!



Julie H
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

robinkaye
Posts: 374
Joined: Fri Nov 11, 2011 10:03 am

Re: Vitamin D Levels

Postby robinkaye » Tue Apr 22, 2014 8:56 pm

Hi Julie, 25 is low even if its in the range. Many like to see at least 35-40 on the bottom end. From what I've read you're better at at least 50. Jim's D was at 11 not long after diagnosis. He started taking 2000mg, then 5000mg and settled at 10000mg per day to get and keep him at 35.

Pete's taking D isn't he? How much?

Robin
Husband has RC Stage IIIC
Chemorad 9/28-11/07
2 rounds FOLFOX to get rid of iliac LN
LAR Surgery 1/17 ileostomy
presacral abscess 2/1 - 3/27
FOLFOX began 4/5 - 6/15
another presacral abscess 6/30-8/10
Reversal 9/11
10/15 fistula with drain

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vilca11
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Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: Vitamin D Levels

Postby vilca11 » Tue Apr 22, 2014 9:50 pm

Hi Julie,

The desirable level for cancer patients is 80-100. For healthy people anything over 50 is ok. In 2012, before leaving the States to go to Ecuador, I brought my levels of Vit D from 25 to 78 (was taking 25k IU of pharmaceutical grade Vit D, could not get it up with lower dose). I did not get any Vit D with me, since the best source of vit D is the sun and I thought that leaving on equator and in the mountains would maintain my levels around 80. Ha... I've just done my Vit D3 test and my levels dropped to 37.... So, I am taking 15k IU of good Vit D3 again.... The conclusion is I have to be more on the sun and usually I am not for different reasons.

In the US, even if you are on the sun in Florida, it is not enough sun to make a difference. The equatorial sun and closest to the equator is needed and also the timing matters, the 12noon sun has the most of the rays we need for vit D production. But that is the most dangerous sun too.

Anyway, taking good Vit D3 (pharmaceutical grade) is a must when cancer patient has such a low level, from what I know... And no less than 8k IU. If does not bring the levels up, take more, but measure Vit D3 levels every 4-5 mo to watch it not go beyond 100.

Hugs, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Re: Vitamin D Levels

Postby hart2hart » Wed Apr 23, 2014 12:42 am

Hi Again,

Couldn't sleep.

Yes, Pete takes 2,000 a day. Guess I have to up that bigtime. To what?

Any brand to take?

Thanks again.



Julie H
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

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vilca11
Posts: 730
Joined: Fri Feb 14, 2014 11:19 am
Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: Vitamin D Levels

Postby vilca11 » Wed Apr 23, 2014 5:37 am

I think, no less than 15k to get him at least to 50. I personally would do 25k, but may be he would be reactive enough to 15k... Buy from Life Extention Foundation - all what they have is best quality on the market and targeted for cancer patients. They do tons of research and it is all reflected in their publications and website. All my supplements I buy from them and they have NDs on board to advise if someone like me is doing naturapatic treatments along with conventional.
Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Vitamin D Levels

Postby Cb75 » Wed Apr 23, 2014 4:11 pm

I agree that the levels should be higher. I take 10,000 iu per day. See if you can find a high dose pill, I was able to find 5000 iu by the brand "NOW". I take one in the morning and one in the evening. Vit D is the only supplement that any of my traditional medical doctors has recommend.

cb
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

Kathy
Posts: 114
Joined: Sat Mar 14, 2009 8:28 pm
Location: New Jersey

Re: Vitamin D Levels

Postby Kathy » Wed Apr 23, 2014 4:17 pm

My husband has low vitamin D levels. The doctor gave him a prescription for 50,000 units once a week for 12 weeks. Ask your PCP.

Kathy
Stage 1- resection 9/ 05
Recurrence-2/ 2008 chemo/radiation 5 FU/oxi
APR surgery 7/ 2008- Found spread to liver-Margins not clean
chemo between surgeries
Liver resection and HAI pump-11/ 08 Chemo 6 months
NED 11/08

NED since 11/2008

robinkaye
Posts: 374
Joined: Fri Nov 11, 2011 10:03 am

Re: Vitamin D Levels

Postby robinkaye » Wed Apr 23, 2014 4:53 pm

Kathy, not meaning to be contrary but I don't understand when doctors prescribe D for a limited amount of time.
You do store D for a while but it will probably go right back down again. Also, the D that doctors prescribe is usually
D2 and from all I've read it isn't the way to go, you need D3.
Anyway, just bringing this up as it has always confused me...

Vilca...what say you?
Husband has RC Stage IIIC
Chemorad 9/28-11/07
2 rounds FOLFOX to get rid of iliac LN
LAR Surgery 1/17 ileostomy
presacral abscess 2/1 - 3/27
FOLFOX began 4/5 - 6/15
another presacral abscess 6/30-8/10
Reversal 9/11
10/15 fistula with drain

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Vitamin D Levels

Postby weisssoccermom » Wed Apr 23, 2014 5:14 pm

Julie,
First of all, the dosage that Pete gets put on should be recommended by your doctor. It is a known correlation that crc patients have lower vitamin D levels than the 'general' public. Why exactly is not known. The predominant two theories that my docs believe are: (1) either we don't metabolize the vitamin D as well or(2) we don't absorb it the same way. Studies have shown that patients with lower level of vitamin d have a higher incidence of polyp formation.

As to what is the correct level, I vehemently disagree that the 80-100 range is desirable for a crc patient. Actually higher levels of vitamin d have been and can be associated with other problems so please don't just go randomly giving Pete massive doses without talking to your doctor and keeping him/her in the loop. All of my doctors (and the literature that I have read) indicate that levels should ideally be in the 50's for crc patients. Kidney problems associated with hypercalcemia can be a very big problem...something that no one on this board can tell you will/won't happen to Pete....that's something your doctor can determine. Remember that vitamin d is fat soluble meaning it is difficult for your body to get rid of it if you take too much. Too much vitamin d (even at one time)can affect one's liver as well....although that complication isn't as likely. If your body has too much vitamin d, your liver will produce a chemical called 25(OH) which in turn can lead to high calcium levels in your blood. There are side effects from high calcium levels, including: headaches, frequent urination, fatigue, muscle aches/pain, digestive problems, etc. Certainly it seems as though Pete needs some supplementation but PLEASE before you go megadosing, talk to your doctor and have him/her be on board with it AND be monitoring Pete's progress.

As for the heavy duty, 10,000IU/day routine, most people I know of that did this 'protocol' (all were crc patients - not a lot but half a dozen or so) were able to get their levels up (based on testing) but once the megadoses were reduced, their levels went right back down again. I've had to have my dosages 'tweaked' several times. Too much, and my levels were approaching 90 and honestly, I didn't feel that great. I'm back down just under 80 (last test was 76) and I feel soooo much better. It is funny....I had muscle aches when I was deficient and muscles aches when I was too high. Vitamin d is one of those that more doesn't necessarily mean it's better. More is fine within reason but too much....and you could risk some very real problems. Remember as well to count all sources of vitamin d...either supplementation and/or natural sources. If, for example, Pete is a regular and consistent milk drinker, he is also getting vitamin d from that source as well. Keep in mind that all dairy sources, such as yogurt, cheese and milk contain vitamin d. Is Pete taking a multivitamin? If so, they generally have some vitamin d as well...typically 400IU/pill.

There isn't any rhyme or reason as to what level will jumpstart Pete or anybody to maintain the optimal levels. Certainly the low, conservative amounts that are in a multi vitamin are well within reason but again, PLEASE do not go giving more than you are giving without talking to his onc, his GP or some other doctor and make sure that he is MONITORED. The last thing you want, Julie, is to have Pete take too much and end up with other issues.

Julie, remember that none of us on this board can or should be giving medical advice. We can tell you what our doctor's have said or done for us, but everyone's situation is unique and every patient needs to be treated as such. This, like many situations, is not a one sized fits all scenario.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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vilca11
Posts: 730
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Location: Moscow, Russia; Baltimore, USA 1992; Vilcabamba, Ecuador 2012

Re: Vitamin D Levels

Postby vilca11 » Wed Apr 23, 2014 7:50 pm

In 2007 or about, when I asked my PCP to measure my Vit D level, she asked me "why" - that is in Johns Hopkins, a good teaching physician, Assistant Professor. Then I told her that 400 IU is a very low daily dose, and she said "really?". And this March, when I went to see my oncologist and told her about Dr. Lin - she had no idea who he is and how Xeloda/Celebrex are supposed to help cancer patients - she is the best colon oncologist of Johns Hopkins.... If doctor Kemeny sees 50 patients a day, how much time you think she has to do research on the newest in anything that directly does not affect her specialty?

You probably do not know what it means to practice medicine in the big centers of the United States - your doctors do not have a life, they are burried under legal requirements to documentation from Medicare and other insurers, hospital quality control organisations from the States, Federal Investigation Units, audits, internal hospital Compliance Dept with continuous auditing, etc, etc... They do not have time and stamina to even want to know what is going on until it becomes just an absolute necessity for their specialty. I am asking my best friend who is a urology surgeon if he knows about this or that - you know what he says? "When I need to know it will be written in the standard of practice" That means - 10 years after it has been written about here or there...

So, yes, you have to talk to your doctor on many issues pertinent to his specialty, but when it is just one step outside - you would be surprised how little they know. Half of my close friends are physicians. I worked on high level position in Johns Hopkins for many years. I've read literally tons of documentation written by physicians of all specialties and helped them fight all kind of "dangers" that they right now face from EVERYWHERE just because they practice medicine. United States is the only country in the world that creates an absolutely impossible burden for majority of physician in practicing medicine and keeping their interest to anything new, emerging, promising, etc...

Well, enough said. Unlike many, I do not believe in the American mantra "doctor is a God" and I have damn good reasons for it, as an industry insider. I myself am responsible for EVERYTHING what is happening to me - that is my life position. And when it comes to being sick, who would have your best interest at heart if not you? I read, research, ask my doctors lots of hard questions (that most of the time they have no answer for) and believe in possibilities... I think, that is the way to relate to a doctor - not just opening your mouth and worshiping every word he says... Do your homework and not just on Pubmed...

"At the time GrassrootsHealth performed the studies that resulted in this increased dosage recommendation, the optimal serum level was believed to be between 40 to 60 nanograms per milliliter (ng/ml). Since then, the optimal vitamin D level has been raised to 50-70 ng/ml, and when treating cancer or heart disease, as high as 70-100 ng/ml, as illustrated in the chart below. " See chart in the article

http://articles.mercola.com/sites/artic ... rcent.aspx

Hugs, Vilca
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

mymom
Posts: 1299
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: Vitamin D Levels

Postby mymom » Wed Apr 23, 2014 7:55 pm

I dont know if my moms levels were ever checked....interesting
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED
6/22- small spot liver again, ablation oct 2023

robinkaye
Posts: 374
Joined: Fri Nov 11, 2011 10:03 am

Re: Vitamin D Levels

Postby robinkaye » Wed Apr 23, 2014 8:37 pm

My experience is that most doctors don't know their head from their backside when it comes to D or other supplements.
I asked for my husband to be tested and worked the dosage with no help, just shrugs from the doc, until it was at 35... not optimal, he's testing again and we will up the dosage. One thing I do know is that when it comes to my families and even my dogs nutrition I put very little faith in the wisdom of the medical profession or government recommnendations - seems they get more wrong than right and do a lot of damage in the process.

There is a study a day on D. You have to read and sort through the information as best you can. Use common sense and pay attention to the details. A recent big name study found little benefit to D supplementation. If you just read the headline and highlights you wouldn't have known that the dosage was 400mg...so throw that one out.

Its not surprising that crc patients are deficient in D, most studies say that 75% of the population is deficient.

Milk and other fortified foods have very little D and its D2. A multivitamin usually has 400mg, enough to ward off rickets. You can get it in fish but have to eat quite a lot.

Thirty minutes in the midday sun with minimal covering produces 10-20,000 iu of D and that doesn't seem to cause problems and actually might be why some of us "come alive" in the summer.

I don't suggest anyone not tell their doctor or ask advice on D but you have to do what you think best utilizing all the info you can find.
Husband has RC Stage IIIC
Chemorad 9/28-11/07
2 rounds FOLFOX to get rid of iliac LN
LAR Surgery 1/17 ileostomy
presacral abscess 2/1 - 3/27
FOLFOX began 4/5 - 6/15
another presacral abscess 6/30-8/10
Reversal 9/11
10/15 fistula with drain

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: Vitamin D Levels

Postby weisssoccermom » Thu Apr 24, 2014 2:05 am

Whatever you think about your doctor is entirely your business and yes, I do agree that one shouldn't put their doctor on a pedestal to the point of just blindly following whatever they say. That being said, however, many patients ARE comfortable with that arrangement and shouldn't be made to feel that somehow it is wrong or that their doctor isn't competent in making decisions for them. It may not be what I believe, but I do recognize that there are patients who are most comfortable with that relationship. Regardless, as a public forum, and not doctors who are directly involved with or know a particular patient's history, we simply cannot be allowing medical advice to be given on the forum.

Everyone can and should gather information from this forum, digest it and take away your own opinions BUT...you should always consult your doctor before taking any supplement, herbs or other drugs particularly if you are thinking of taking a drug like vitamin d in higher than 'normal' levels. Remember, if you are on chemo, warfarin/Coumadin (a not so uncommon drug for chemo patients) or any other drug such as insulin, etc. consult your doctor to make certain you aren't taking too much of this new supplement and/or herb AND to verify that what you are planning on taking may/may not interfere with your cancer treatments.

If you find a study or an article that you find particularly compelling, by all means share it with your doctor if you see fit and see what he/she thinks about it. Whatever decision you come to is entirely your choice and hopefully you will include your doctor in that process.
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

hart2hart
Posts: 798
Joined: Wed Nov 23, 2011 10:46 pm

Re: Vitamin D Levels

Postby hart2hart » Thu Apr 24, 2014 5:53 am

Thank you all for your thoughts!

Appreciate all of them!


Thanks again, we both feel fortunate to have ya'al' to bounce things off of!


Love, Hugs and Rainbows from Connecticut!



Julie and Pete
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 1/2024
Hai Pump/Port Removed - 1/2020

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Vitamin D Levels

Postby dianetavegia » Thu Apr 24, 2014 7:54 am

My first Vit D level when I finished chemo was 17. I began taking supplements and got it up to 39. I've been taking 6,000 IU's daily for about 4 1/2 years and my reading stays around 101.

I do live in the deep south but am 63 and fair skinned. As you get older, your skin doesn't produce enough melanin to convert sunlight to Vit D3.

Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2


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