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Stily1 Offline OP
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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?


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
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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.



Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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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.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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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.


DX in 12/2010. Stage 4 SCC HPV+ BOT swollen lymph. I've spent the past 3 years away from medical treatments. Instead I've focused on good nutrition, active exercise, singing, laughing, oral exercises and such. I've had neither pain nor discomfort. But I haven't been able to kill the cancer. So, I'm now considering robotic surgery and/or radiation.
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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

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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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


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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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


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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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.


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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I checked my last blood work and Vit D was not included.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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