Hi everybody. I'm curious if anyone can comment on an idea I've been rolling around in my head.

It seems to be generally accepted that having one of the high-risk forms of human papilloma virus (HPV) is one factor that causes oral (and cervical) cancer, but having high-risk HPV does not guarantee you will get cancer. This suggests that some other factor or factors are at play.

It is also becoming accepted that vitamin D deficiency may contribute to certain cancers (notably breast and colorectal).

I also have read (somewhere) that certain people may be genetically predisposed to vitamin D deficiency, and it's generally accepted that as we age our skin looses the ability to generate vitamin D from sunlight. In the western world, we are also getting less and less sunlight as our modern lives keep us indoors, and as fear of skin cancer encourages us to use sunscreen. I find the Vitamin D Council web site to be a very interesting resource, and I don't *think* that including it here will violate any sort of promotion exclusion: http://www.vitamindcouncil.org/

When my father was 70 he was diagnosed as severely vitamin D deficient, despite living an active lifestyle, and began supplementing with D3, which seemed to improve his sciatica (leg nerve pain/weakness) almost immediately (those of you limping around with a cane, take note!).

Unfortunately I began supplementing with vitamin D3 before I had my blood levels tested, so I cannot say if I may have been vitamin D deficient. It's worth noting also that I started supplementing with D3 before I was diagnosed with my tonsil cancer, but I *think* I had been experiencing the swollen lymph glands well before then. I've been taking 6,000 IU/day for several years, and my blood levels of 25(OH)D were 149 nmol/L most recently, nicely within the range recommended by the Vitamin D Council.

So it is my fantasy that maybe, by removing a vitamin D deficiency, even in the presence of high-risk HPV, one might avoid the initiation (or recurrence) of oral cancer.

Thoughts?

Interesting idea. I've read about supplementation with isotretinoin which is derived from vitamin A as having a potential affect on reducing recurrence of SCC-HN. But, it hasn't been proven and I'm not sure if the medical research community found any validity in pursuing it.

I started Vitamin D supplements in October after testing revealed I was severely deficient. I took 10K IU for three months and then went on 5K for maintenance. I've noticed a difference for the better.

Since it is a fat soluable vitamin, it doesn't get excreted so it's best to supplement only if you need it and under the advice of a doctor.

The most likely scenario tossed around by the really bright is that in those of us where our immune system does not recognize HPV16 as a threat, that we have some genetic commonality. While we several years now from mapping the human genome, deciphering it all is very very far away. Gathering genetic samples from HPV+ OSCC individuals could be done, but there are really more pressing things and little money for any of them. But decades from now someone will have samples in teh national cancer registry tissue bank to look at and in the SEER tissue bank as well. That tissue bank was recent used by Gillison et.al. funded partly by OCF to look backwards at HPV into the 1970's and we were able to map it increasing in OSCCC samples as we got closer to today.

Just like we have genetic markers now established in breast cancer, we will develop them in H&N..... many years after the big four are solved and marked.

All this is probably going to one day reveal things. Co-founding factors like diet will likely play a part but not be the sole determining issue.

I am frequently asked why, with HPV causing cervical cancers for so many decades and the scientific community knowing so, why do we not even have the life cycle of HPV16 mapped yet. The answer is that having controlled, for the most part, cervical cancer (the disease that it caused so much havoc in) to the point that only 3700 women die from it annually, there was no scientific curiosity matched with government funding to do something that at the time, (pre OSCC-HPV+) seemed not so important. Now that we know about oral and HPV16, in the last two years we have learned how to culture HPV16 outside the body, something that took years to figure out, so that it could be studied more throughly in a laboratory environment.

By the by, I take D supplements with calcium as well prophylactically. No down side and very inexpensive.

You're right on. Accepting much of what you write leads to the action of strengthening the immune system however we can. After all, if only a very small percentage of HPV16 becomes cancerous then it is what some call "the immune system" which should by our focus. I.e. by eliminating commonly recognizable deficiencies like vit.D., which you point out. But besides nutritional and exercise changes what is the role of such social actions like "laughing clubs", improv classes, toastmaster luncheons, church choirs and local theatrical groups? Many of us have internalized cancer as a negative sign that we think and unfortunately, FEEL stigmatizes us in the eyes of others. My experience is that hospitals and clinics reinforce this.

Wlildebill,

Please focus more on curing your cancer by scientifically PROVEN methods now and afterwards you can focus on diet and lifestyle changes that may and I mean may, improve your chances of staying cancer free.

Trust me when I say this, if you don't get treated soon you will die a horrible unnecessary death.

David. Nicely said, assuming that Bill even has cancer. "A swollen lymph node from HPV at the base of the tongue" is all he has shared about his condition. Sandy's husband is an example of how even doctors can jump the gun and why no one should start TX without a biopsy confirmation.

Back to the OP's point: Before the cancer, my cardiologist had me on Vitamin D. After the cancer, my endocrinologist also insisted I take Vitamin D. (4000 IU daily)
I have regular blood tests done that show I used to have a major deficiency but no longer do. Their recommendations are independent of any potential cancer benefits.
Charm

Interesting read on Vit D.

I had all my blood levels tested a month ago. My Vit D level was at 21. My Dr. told me 50-100 is good. He precribed Vit D 50,000 IU once a week. I was never tested for Vit. D before last month.

Just throwing this out I wonder if lacking Vit. D has anything to do with cancer. I'm not going there that it does, just wondering.

Connie

I'll have to check my last blood test (less than a month ago) to see if Vit D was tested.

I had labs done last Friday and it shows Vitamin D deficiancy. I have labs done every 3 months,and get a copy of the results each time. First time I have seen this.

I checked my last blood work and Vit D was not included.

I have not ever seen Vitamin D listed on my bloodwork. Next visit to the doctors, I will ask about it.

David & Christine

You are going to have to ask for Vitamin D tests. Unfortunately CCC and most oncologists still have on 20th century blinders concerning blood work and routine tests. Lucky for me that my cardiologist went back for a post graduate course in the 21st century. He ordered both my thyroid (TSH) blood work and Vitamin D blood tests even before I knew I had cancer. When he was contacted by my CCC to make sure no cardiological issues precluded radiation, chemo or surgery, he stressed to me that in his experience, oncologists ignored Vitamin D and used old 20th century lab values for TSH. Sadly, it turned out to be very true.
My endocrinologist has a blood tests for tested for Vitamin D done every 5 months. She thinks it plays a major part in recovery from radiation and chemo.
Quest Diagnostics form shows it as test # 17306X, Vitamin D,25-Hydroxy. It gives you total D as well as a breakdown of D3 and D2 components
You want ABOVE 30 ng/ML for D total(it's the minimum, the maximum is 100)
My last readings were excellent at 50 ng/Ml for both total and D3. IMO this and the TSH tests should be part of the "standard" panel tests done for cancer follow up
Charm,

This is all very interesting. I recently, last several months, had to start on Vit D, independent of any connection to the cancer. I had labs and a bone density test as part of a regular physical and determined a Vit D deficiency.

Sharon

I've been taking 6,000IU/day of D3 for several years now. I had my D level checked last month and it was 62.4 ng/ml, which is within my understanding of the recommended range of 50-80 ng/ml. It seems likely to me that I would be deficient if I wasn't supplementing.

Stily1

Thanks for starting this thread. I just got back from endocrinologist and my Vitamin D level is 64 ng/ml which she confirmed is excellent. I only take 4,000 IU a day (2 tablets at breakfast crushed and down the tube) I know I would be deficient without the supplements since my prior blood tests confirmed it. Like yourself, I started on Vitamin D supplements before I knew I had cancer, but only by two months.
It's important with Winter coming and less sun that people monitor their Vitamin D to see if they need supplements.
Charm

Most primary care physicians are including testing Vitamin D levels as part of a comprehensive blood workup that one would get with an annual physical exam. I'm fairly certain it has become a standard of practice. I'll ask my sister who is a family nurse practitioner.

Kerri

I don't think it's "most" in terms of numbers, but "most up to date and concerned" doctors, a dramatically smaller cohort. It should indeed be the standard practice, but as you can see from this thread alone, neither DavidCPA nor Christine have had it done despite regular doctors' visits. Sad to say, despite weekly blood tests for my two months of chemo for multiple panels, there was not even one Vitamin D test. It was my cardiologist who insisted on it and now I have my endocrinologist monitor it since I have to get regular TSH (thyroid) blood work anyway
My wife and son both have primary care physicians and neither of them have had Vitamin D tests for their physical exams.
I'd be interested to hear if your area is a bright spot of medical care after you hear from your sister.
Charm

Hi, Everyone.
I guess my PCP is one of the proactive doctors who routinely test all patients yearly. I live in NE and we are especially at risk due to the long winters and cool springs. That being said, I'll quote you on what my sister found out for me...

"Currently, the recommended Vitamin D dose is 600 International Units (IU) adults ages 19 to 70 (which is higher than it used to be). People 71 and older are supposed to get 800 IU a day. I do not believe testing has become a standard in preventative medicine yet. In theory, your provider should be evaluating your health risks and any issues/complaints you may have and order the appropriate labs. You could ask for your levels to be drawn. Pretty much anybody that lives in this area is at risk. With that said, people should not just behave as if they are low and take more than is recommended. Some side effects of high levels have been noted."

Hope that helps!

Kerri

I personally believe that healthful eating and such truly is the way to go. Vitamins are good dont get me wrong. But two glasses of almond milk offer up 90% of what should be your daily intake - of vitamin d. Plus the cottage cheese I toss into the smoothie I have every morning covers the rest - that said... I'm not taking any supplements any more (other than the protien I add to my smoothie in the morning) throw in a walk outside in the daylight for good measure and hopefully I'm getting enough. Was I vitamin d deficient? Prior to this - oh yeah for sure - I was a veg head for 7 years and had issues with dairy so I didn't do any kind of dairy except soy and even that not much!!! anyway - watching what you eat is the best way to go. Good article and it makes sense.

Luckily the issue of vitamin D deficiency is easily resolved. Blood tests don't lie. If your test shows you don't have enough Vitamin D, it could be diet, it could be aging (as we get older, everyone generates less Vitamin D). I agree with Cheryl that you should not just start popping Vitamin D pills
Few individuals would allow their clinician to simply guess an cholesterol level before placing him/her on some type of medication. Clinicians have access to an accurate lipid test that provides guidance. The same is true for vitamin D levels.
What counts is your blood level, not your intake.

True ill have my dr test me tomorrow!

Hi Cheryl, when you say that diet alone should get you "what should be your daily intake" what recommended daily intake are you referring to? One of the central points of the current Vitamin D "issue" is that the USDA's RDA for Vitamin D is, some say, entirely wrong and far far too low. Our ancestors lived and worked outside. They didn't have office blocks, cars, central heating or air conditioning. They lived outside and were exposed to MUCH more sunlight than your average "First Worlder" today. Diet isn't really the issue, IMHO. Our ancestors didn't get their D from their food.

Cheers,

-Seth

Stily you're right I was basing it on h RDA (government!) I talked to my naturopath and he told me what you did... He apparently takes 2000 mg of vitamin d! I thought tha might be overkill, so I started adding 1000 to my diet daily that combined with the 600-800 I get from my diet puts me in the zone! kudos to whoever started this thread!!

Cheryl
My cardiologist and my endocronolgist both recommend that I take 4000 IU a day of Vitamin D. That dosage has been confirmed by my 3 Vitamin D blood tests a year to put my vitamin D level at the right mark on the accepted lab values.
Again, my recommendation is to get a Vitamin D blood test, that's the best way to see if you are getting enough Vitamin D or if you need supplementation.

Charm

Holy crap! I will best tested - thanks!

No matter which dietary choices we follow as individuals, regular blood work and supplmentation is always a good idea. Even veganism or a vegetarian diet has it's shortfalls and as we are all creatures of habit who usually eat to taste and not for what are body "needs" we'll have a habit of being deficient in one nutrient or another. Typical shortfalls for a vegan/vegetarian diet is Vitamin D, B12, calcium among other things, there are no perfect diets and certainly no perfect individuals following them so supplmenting just makes sense.

Personally RDA's should be thrown out the window (they are typically very low in the first place) and a nutrition plan set in place by working with your PCP and a nutritionist using blood tests to see where you are naturally deficient. Serious athletes live and die (or should) by their nutrition plan and depending on your activity levels getting everything you need through food is a massive chore even eating 6x per day which I personally do.

Those of us on a liquid diet especially should be mindful as malnutrition is a very easy place to get to if we are just drinking Ensure or Jevity. I make sure I'm juicing fresh fruits and vegies along with the protien powders, vitamin and herbal supplements that I take (which includes vitamin D). It is possible to OD on certain vitamins and minerals so working with your Dr and a nutritionist is important, even if it's just to get you started in the right direction. I don't believe I could work or workout at the pace I keep without proper nutrition, it just gives your body the best environment to be healthy.

Sorry for the book, nutrition is a passion and I think if our bodies are to have the best chance of fighting this disease or any type of infection it has to be running at it's peak.

Eric

As I understand it, you can't get vitamin D from diet anyway.....it's mostly from exposure to sunlight. Also, it's not really a vitamin, it's a proto-hormone.

I've been taking 6,000 IU/day for a couple of years and I think it is likely contributing to my overall good health. Or, at least, it hasn't hurt me any!

Traditional medical advice sometimes still freaks at those numbers, but there seems to be a strong shift going on currently, so if you see advice to the contrary, keep looking.

Good luck!

-Seth