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Old 01-12-2009, 09:06 AM   #1
RobinP
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Vitamin D3- by Larry Norton

Just heard a live webcast by Dr. Norton from the Memorial Sloan Kettering. As you know, the MSK and Dr. N. are not big on alternative therapies, being a main stream medical institution, supporting more traditional pharmaceutical treatments. However, he did state in his webcast that vitamin D3 is a supplement that he recommends daily at a dose of 2000 IU for cancer prevention.

PS. I've been taking about 1200 IU a day and will be increasing to 2000 IU, as Dr. Norton suggests.
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Old 01-12-2009, 09:11 AM   #2
sarah
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Hello,
so with 2000 iu of D3, how much calcium? how much magnesium?
thanks
sarah
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Old 01-12-2009, 11:38 AM   #3
Debbie L.
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check levels

Hi,

There is a LOT of information out there right now about the association between many conditions and diseases, and low levels of serum Vitamin D.

I've been supplementing with D for awhile at 2000 IU's day, probably for 5-6 months. I had routine labs drawn recently and threw in a D level and it was 14. That's deficient by this lab's standards. They say 30-80 is ideal.

This is probably a more complex issue than simply adding a supplement although there does not seem to be any major downsides to trying a supplement.

Debbie Laxague
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Old 01-12-2009, 01:02 PM   #4
StephN
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Exclamation

Debbie -

Wonder how many tests there are to measure vitamin D?? My level was 30 in a test with a normal between 40 - 100. Your 14 is much lower than my "low," deficient number!

You are echoing the problem with effective absorbtion that my doctors have been finding with many patients who - by the "old" standards - should be getting enough vitamin D.

You may want to look in to taking a short course (8 weeks) of mega D as I am doing. Then have a reanalysis to see how your body did with it.

My mother was always a big one on drinking milk (one glass has about 1/2 "old" daily amount of D), which most of us probably don't do much of. I also don't eat much cheese or anything else that I think could worsen my port-a-cath clots.

Let's keep this discussion going, as it is becoming apparent that many of us are actually lacking in something we thought we we getting enough of!
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-12-2009, 01:31 PM   #5
Becky
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Sometimes it is not the amount of a particular vitamin we take but the other things that may affect its absorption. A and D are prime examples since they as well as many herbs (tumeric/cucurmin) are fat soluble. So... here we all are ladies, watching our waistlines and not eating enough fats (or meat) when we take some of these supplements. I think it might play a bigger part than what we initially think. Always take supplements with a meal and think about how "fatty" a meal might be so you time certain supplements with the right meal. Just some thoughts here. Secondly, as we age, it is more difficult to convert D3 to its useable form (and this is the form they test for in the blood). First the liver needs to make the first conversion and then the kidneys make the second conversion. These steps become more and more inefficient. Secondly, I wouldn't think chemo would help the functioning of either of these 2 organs either - but ageing is a bonefide culprit and why the elderly are recommended even more. Lastly, diminishing thyroid function also affects vitamin D absorption and conversion.
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Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-12-2009, 01:35 PM   #6
AlaskaAngel
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Question Just speculation

I wonder if exercise might increase the conversion process?

A.A.
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Old 01-12-2009, 04:14 PM   #7
Debbie L.
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really complex issue

Hi all who've chimed in so far. Lots of questions and I'm pretty sure they're still working on the answers.

This is the time of year when Vitamin D levels are lowest. Ideally, we get it from sun exposure. But with the sun near its lowest point for us in the northern hemisphere, it apparently does not rise high enough to be of much good even we sunbathed naked at noon (brrr!).

I have been reading much of the recent research into Vitamin D and the many diseases/conditions that have an association with low levels. But for most of what's been observed so far, they don't even know if it's low levels contributing to the condition or the condition contributing to the low levels. Let alone the best way to handle the low levels. There's a long way to go before we'll have answers, alas.

Still, supplementation seems fairly innocuous. Might help, probably can't hurt. They used to say that it was easy to OD because D is fat soluble and thus not automatically excreted when there's an excess, as, for example, happens with Vitamin C. But apparently it's nearly impossible to take enough to OD, and that previous information was a theory presented as a fact (hmm, why am I not surprised?).

I have re-read the relevant chapter about cholesterol, vitamin D, folic acid, skin color r/t melanin, and sunlight - in "Survival of the Sickest" which I highly recommend as a book full of interesting ideas. The frozen frogs alone are mind-boggling. And then there's the semi-aquatic apes. Really, give it a try, you'll be fascinated.

I have a couple of links to more Vitamin D information/questions. One is about Quest lab's errors in reporting the test, and about unreliable assays in general. Another has cautions about supplementation. Right now, it's very PC to be promoting Vitamin D as a magic bullet. There are far more promoters than cautioners. Still, I'm somewhat skeptical that's it's as good as the hoopla would have us believe. One, I tend to distrust "magic bullet" kinds of solutions - it's always more complex than just one thing. And two, it just seems intuitively wrong that we should have to artificially add something to our body in such a large quantity. Our bodies are finely tuned machines (ideally). When we muck about with the tuning by adding large quantities of anything - that can have farther reaching effects than we may initially understand.

I never used to be such a skeptic. But still, I have now increased my daily D from 2000 IUs to 4000 IUs. I don't really want to get it retested though.

Debbie Laxague, going to look for those links:
Quest labs: http://www.nytimes.com/2009/01/08/bu...08labtest.html

or tinyurl: http://tinyurl.com/76o23u

Marshall's discussion of possible harms of supplementation (I do not know the reliability of this person - does anyone else? It's posted on a website called "Science Daily"):
http://www.sciencedaily.com/releases...0125223302.htm

or tinyurl: http://tinyurl.com/3935y6
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Old 01-12-2009, 10:51 PM   #8
vickie h
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Good discussion on Vitamin D3. I take 5,000 to 10,000 a day on the request from one of my Oncs. I was tested at 40 and she is doing her own research and wants my levels to be 50 to 60 ideally. Thanks for postging this and getting such wonderful feedback. Love, Vickie
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Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 01-13-2009, 06:03 AM   #9
R.B.
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There are two good D3 lectures on this post by experts representing the position we need more D3

The first take a while to download but will if you leave it to run and do something else at the same time (-:.


http://her2support.org/vbulletin/showthread.php?t=37448
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Old 01-13-2009, 07:54 AM   #10
RobinP
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http://74.125.45.132/search?q=cache:...lnk&cd=4&gl=us

Above is Dr. Norton's lecture link, where he spoke of vitamin D during the second half of his talk, recommending a dose of 2000 IU daily.

Yes, vitamin D is becoming the new wonder vitamin, as it aids in cancer prevention, decreases aches in bones and joints, helps increase bone density with calcium and magnesium, etc.

KEYNOTE TO DR. NORTON'S LECTURE:
New watch for Rank Ligland antibody drugs in the next few years,which will eventually compete with or replace the biphosphonates for building bone and preventing bone mets.
http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0
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Last edited by RobinP; 01-13-2009 at 08:09 AM..
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Old 01-13-2009, 01:39 PM   #11
StephN
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Hi Everyone -

Vickie H - was wondering what the follow up is with your high dose vitamin D. How long are you supposed to take the 5 - 10,000iu daily? Will you have new bloodwork to test the level?

As for the level that seems to be theraputic, my med onc recommends in the same neighborhood as Vickie's. It is felt I should be at 50 to 55. I was given the impression that this is what is coming out of the cancer meetings.

I have always been a breakfast eater - need that boost in the morning. So no problem with my getting enough fat somehow for absorbtion of the vitamins I take. Always taken supplements with enough food except something like COX2 inhibitor which says to take between meals.

Don't know HOW many friends I have had to instruct that taking the vitamins with just a cup of coffee or orange juice in the morning is a waste of their money. So many seemingly intelligent people do not know that they need some fat to break down the vitamins. Wonder why the companies don't put such instruction on the labels or the stores don't print little handouts??
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 01-16-2009, 12:40 PM   #12
RobinP
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more on lack of vitamin D increases breast cancer risk and relapse...

http://www.enews20.com/news_A_Low_Vi...isk_07950.html
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2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 01-20-2009, 12:05 PM   #13
RobinP
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Just read an interesting article that calcium supplementation not only helps bones, but help prevent bone mets. The article was in MAMMO magazine.
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2002- dx her2 positive DCIS/bc TX Mast, herceptin chemo
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Old 01-20-2009, 12:19 PM   #14
vickie h
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Steph, I am being tested monthly. The first test was last month, since then I have increased my dosage from 1,000 to 10,000 a day. I am due for a test next week and will let you know if the numbers are increasing. It may take months to see a rise. Sorry I'm replying so late to your post...for some reason I don't get notification of new postings any more. So if I don't go looking, I miss a lot of posts. Love, Vickie
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Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 01-26-2009, 08:56 PM   #15
Vic
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Just bought more Vit. D-3

I've been taking Solaray Vitamin D-3 2,000 IU for some time now and my onc. recently tested my Vit. D levels and I was right in the middle. I may bump up my 2K to 4K as these little lemon flavored lozenges are really easy to take and tasty, too.

Vic
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Diagnosed 12/03 at age 53
1.5cm tumor, ER-PR-, Her2 3+(rt side)
Stage 1B, Three negative nodes from Sentinel Node Biopsy
Paget's of the nipple, Infiltrating Ductal Carcinoma and DCIS of the rt breast
Bloom-Richardson score 8/9, P53+ 60-70%, Ki-67+ 30-40%
Skin-sparing mastectomy with immediate lat-flap reconstruction and saline implants, 1/04
Chemo: FAC, five sessions every three weeks Feb.-May 04, then switched to HTC weekly for 12 weeks, June-Aug 04
Zometa every 6 months for osteopenia, started April 09
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