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mainsailset View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2011 at 11:04am
Bunk! Sorry. But the Vit D does store and so does have residual levels. And it would not go say from my level of 66 down to 19 which was my level at dx. It can only be increased through sunshine and supplements with small amounts added in through things like milk. Meanwhile, while he's having her go off the D her system is having to do without all the good things that D encourages for the down time as well as the time it takes to bring levels back up.
Obviously, I'd steer you over to the Vit D council and tell you to write them an email with the question because talking to me you'll just get highly professional responses like "BUNK!" (I'm kidding Tasoulla).
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Barbi Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2011 at 3:46pm
I just read an article this morning about testing Vit D levels and apparently there are different ways to do so.  The best way looked at something which remained at a stable level over a longer period of time (it seems like it was about 21 days) but there are some tests that look at something in our blood that changes daily based on our intake.  The article mentioned that there are new standards in place so that all labs will do the test the same (the 1st example), but perhaps that is not mandated yet or perhaps some doctors aren't aware of that change.  I also wonder if they have to order the correct test.  I'm sorry I didn't pay more attention to the names of the tests, I was just browsing.  I might have read this on the Vit d council website.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2011 at 7:34pm
I guess my train of logic goes along the way of; my levels are what they are, whether I'm supplementing or not on any given day; they need to be in the mid 60's so somebody is going to have to do some fast talking to get me to drop taking them for 7 days, especially since we TN'ers notoriously have low levels.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2011 at 8:58pm
When Susan was diagnosed and we began learning about the various risk factors for TN, this vitamin D thing jumped off the page at me. Susan really had no other risk factors - she had eaten an extremely low fat/low sugar mediterranean diet her entire life, she had no weight issues, she exercised regularly, BRCA negative, non-smoker, etc. The one thing that never did (perhaps due to her culture) was spend any time at all in the sun. Coincidence??? Anyway, we began taking D3 supplements after her diagnosis and she's worked her way up to around 5,000IU/day. She intends to try spending more time outdoors now that it's getting warmer and plans to have her blood tested soon. For me it's a more difficult decision (about going outside) since I had melanoma in 1996. 
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote zoomommy2 Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2011 at 9:24pm
Martin,
Lots of sunblock when you accompany your lovely wife to the outdoors!
Lee in Denver
dx6/09,stageII,gr3,(L)mastectomy 7/09,ACx4,Taxolx7,Avastin study,gall bladder surgery 1/10,4/11 Stage 4, mets to lung, 4/11 Started Taxotere and Xeloda, 5/11 Taxotere stopped, off Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2011 at 10:25pm
I hope I've mentioned this before but it bears repeating, when I got my levels up in the D I found that I no longer sunburned and I used to be an easy target for the sunburning. Be very careful of the sunblocks that you use, there is a difference and some cause a certain amount (barely noticeable) of inflammation. Interestingly, it's been noted that the D levels worldwide went down almost simultaneously with the advent of sunblockers...
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 03 2011 at 10:59pm
Martin,

Has Susan's Vit D level been tested?  Most of us at dx are extremely low.  It's good to know your starting point, then I'd recommend testing every 4 to 6 months to see if the levels are increasing.  It takes time to build the Vit D levels back up.  It's good you've been proactive with Vitamin D supplementation.  Until I joined this forum, I knew nothing about Vitamin D levels or even asking for a test.  Nancy, Connie and Mainy helped educate me.

Donna


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2011 at 8:56am
We had it tested early on, when I first learned that it could be a problem. They told us it was "normal," whatever that means. We are going back to see Susan's oncologist tomorrow and will ask to have it tested again. What numbers should we look for?
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2011 at 9:34am
Martin,

This info is from the Edges-CAM:

HD-D3

  • Optimal Formulation: Vitamin D3 (which is the cholecalciferol form), not Vitamin D2 (which is the ergocalciferol form). No standardization issues.
  • Optimal Dosing:  The best way to determine the optimal level for antitumor benefit is through a simple 25(OH)D (Vitamin D3) assay or laboratory test, also known as a cholecalciferol assay / test (or the "25-Hydroxy Vitamin D" test). Aim for a target level for 25(OH)D of at least 66 ng/ml which typically will require at least 3000 - 4000 IU of Vitamin D/daily, remembering that each 1000 IUs of Vitamin D elevates serum 25(OH)D levels approximately 10 ng/ml above base.
  • Benefits of High-Optimal 25(OH)D Levels
    It is known that 52 ng/ml levels are associated with a 50% reduction in risk of breast cancer, compared to 13 ng/ml (per Cedric Garlands's 2006 APHA review). And there is now compelling human clinical data in a case study presented by John Sievenpiper and Simon Pearce with the Royal Victoria Infirmary of high-dose Vitamin D3 (HD-D3) averaging at 10,000 IU/daily that has induced complete remission of distant metastasis (bone), with implications beyond bone metastases.
  • Therefore, for (1) patients with active malignancies, and/or (2) those at elevated risk of malignancy, recurrence or metastasis, a target level of at least 66 ng/ml would be of greater potential benefit.
  • The Special Needs of African-American Women:
    In addition, adequate testing and supplementation are even more imperative for postmenopausal African-American women who, as the NHANES III study has demonstrated, have lower serum 25(OH)D concentrations at all ages than do whites, and the research of John Aloia at Winthrop University Hospital has established that this population is relatively resistant to low-dose supplementation, finding that supplementation with 800 - 1000 IU vitamin D per day for 3 years effected absolutely no raising of 25(OH)D or PTH concentrations , in contrast to other racial/ethnic populations.
  • But note that there is considerable interpersonal variation, so retesting is prudent: three consecutive monthly readings are  advised to assure optimal 25(OH)D levels (amounts of 10,000 IUs/daily and even above have been found unproblematic).
  • VHD-D3 for AI-Induced Disability
    It's been recently  established that Vitamin D deficiency and insufficiency may be a, if not the, major contributor to musculoskeletal symptoms and bone loss observed in women taking aromatase inhibitors (AIs): Carol Fabian at the University of Kansas, along with Qamar Khan and their colleagues, showed that supplementation with
    VHD-D3 (very high dose Vitamin D3) in the form of injectable 50,000 IU weekly can reduce musculoskeletal symptoms and fatigue in women with suboptimal vitamin D levels.  At baseline, 63% of women exhibited vitamin D deficiency (<20 ng/ml) or insufficiency (20–31 ng/ml).  25(OH)D levels >40 ng/ml were achieved in all women put on 12 weeks of 50,000 IU D3 supplementation with no adverse effects, and after 16 weeks of AI therapy (letrozole (Femara)), more women with median 25(OH)D levels >66 ng/ml reported no disability from joint pain than did women with any levels  below, by an order of 52% versus 19%, respectively.  Thus, very high levels of 25(OH)D, >= 66 ng/ml, are needed to significantly reduce disability and fatigue from AI-induced arthralgias/myalgias and associated fatigue. 

  • Clinical Lessons re High Dose Vitamin D3:

 

Benefit Objective

Target 25OHD (aka, 25(OH)D Vitamin D3 Level

 

 

Optimal  Bone Health

> 42 ng/ml

Anticancer Activity

> 52 ng/ml

AI-Disability Relief

> 66 ng/ml

 

Please check out the website and link for additional information:

http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TNinTN Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2011 at 9:54am
Thanks Donna!
Wife age 53@dx TN IDC Stage IIA 7/10; BRCA1&2 Neg; BROCA Neg; LN Neg; taxol+cisplatin+/-RAD001x12(clinical trial); lumpectomy 12/10;ACx4; 33 Rads complete 4/11; NED 5/5/11
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: May 04 2011 at 10:45am
Martin, when I first had mine tested in the wayback part of this journey, they told me mine was in the normal range too...at 19. "Normal" is a word I now question whenever it crops up in my discussions with medical folk.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2011 at 6:26pm
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 18 2011 at 6:14pm
Check out the Vitamin D Council's redesigned website.  It's much more user friendly.

http://www.vitamindcouncil.org
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2011 at 1:02am
bump

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 08 2011 at 6:21pm

New Guidelines Suggest Higher Doses of Vitamin D

Endocrine Society Says Vitamin D Deficiency May Be Common in U.S.

June 6, 2011 -- Noting that vitamin D deficiency is "very common in all age groups," new treatment guidelines call for many Americans to take more vitamin D than is currently recommended.

The guidelines, from the Endocrine Society, offer some contradictory advice. They say that virtually everyone in the U.S. should be taking vitamin D supplements, but that only those at risk for vitamin D deficiency should have their vitamin D blood levels checked.

Only those whose serum 25(OH)D blood levels are above 30 ng/mL are getting enough vitamin D. Lower levels are "insufficient," and those with levels below 20 ng/mL are frankly deficient.

But much higher levels are better, says guideline committee chairman Michael F. Holick, MD, PhD, director of the vitamin D skin and bone research lab at Boston University.

"The committee decided that 30 ng/mL is the minimum level, and recommended 40 to 60 ng/mL for both children and adults," Holick said at an online news conference.

To read the entire article:
http://www.webmd.com/diet/news/20110606/new-guidelines-suggest-higher-doses-of-vitamin-d


DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jun 08 2011 at 9:37pm
Be sure to go to the thread on the relationship between biophosphates (Zometa) and a higher Vit D level ... it's a good thing!
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 08 2011 at 9:39pm
I saw that.  At least when I was on Clodronate I had my D3 levels up.  Good news of some benefit there!
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 18 2011 at 1:21pm
Mainy posted this in another thread about how Magnesium is important to Vitamin D absorption.

http://www.vitamindcouncil.org/
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 28 2011 at 7:56pm
The Vitamin D Council is set to file a complaint against the FDA.

http://www.vitamindcouncil.org/press-release-vitamin-d-council-set-to-file-complaint-against-fda/
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 30 2011 at 7:19pm
Vitamin D Council
Press Release
June 30, 2011
Diabetes

We are all waiting for the 900 or so randomized controlled trials that scientists are conducting using vitamin D.  This morning, researchers working at Tufts Medical Center in Boston, under the direction of Professor Anastassios Pittas, published just such a randomized controlled trial in the American Journal of Clinical Nutrition.

Their research group reported that 2,000 IU/day of vitamin D, given for 12 weeks, significantly improved pancreatic function in mildly overweight adults with pre-diabetes. Unfortunately, the lead author, Dr. Joanna Mitri, did not comment on the low dose of vitamin D they used, 2,000 IU/day, which only increased vitamin D levels from 24 to 30 ng/ml. Nor, in spite of it being a randomized controlled trial, did the authors make any new clinical recommendations for the people who paid for their study, the citizens of the United States.

In spite of the low dose and short length of their study, they found their principal outcome, a measurement of pancreatic function, increased by 300 in the vitamin D group but fell by 126 in the placebo group. I cannot link the study to PubMed as it is not yet listed there; it will be in a few days.

Joanna Mitri, Bess Dawson-Hughes, Frank B Hu, and Anastassios G Pittas.  Effects of vitamin D and calcium supplementation on pancreatic b cell function, insulin sensitivity, and glycemia in adults at high risk of diabetes: the Calcium and Vitamin D for Diabetes Mellitus (CaDDM) randomized controlled trial. AJCN. First published ahead of print June 29, 2011 as doi: 10.3945/ajcn.111.011684.

In the end, they studied 22 volunteers in the vitamin D group and 22 in the placebo group. However, to give you an idea of what a feat this study was, how difficult it was to get enough subjects, they started with 911 subjects yet ended up randomizing only 44 into the vitamin D study. They did a parallel calcium study with 45 subjects, which found calcium had no benefit on pancreatic function.

The same senior author, Professor Anastassios Pittas, recently announced the results of a much larger epidemiological study that showed for every 5 ng/mL increase in vitamin D levels, the risk of developing diabetes dropped by 8%.  However, he was quick to warn that such epidemiological studies should not change clinical recommendations, only randomized controlled trials can do that. Then, when he oversees just such a randomized trial, not a word of clinical advice, only the ever-present request for more research money from the citizens of this country.

http://diabetes.webmd.com/news/20110628/study-vitamin-d-may-cut-risk-of-diabetes

Of course the Food and Nutrition Board will say they never said levels greater than 20 ng/ml had no added benefits, only that no good evidence existed for such a benefit at the time they issued their report. Actually, if you exclude the science of epidemiology, that is still a false statement. The point is that history will record that someone was wrong.  Maybe it will be me and the Vitamin D Council’s recommendation, going into its fifth year, that adults should take at least 5,000 IU per day.  Or maybe it will be Professor A. Catharine Ross, of Penn­sylvania State University, the chairwoman of the recent FNB that concluded 600 IU/day is the Recommended Daily Allowance, all adults need.  Looking at the study published today, it is clear that 600 IU/day would not have resulted in a significant improvement in pancreatic function.

I predict that after most of the randomized controlled trials are out – in another ten years – the FNB will meet again and say “whoops,” it should have been 5,000 IU/day all along. However, by then the premature death count will be in the millions.

John Cannell, MD
Vitamin D Council
1241 Johnson Road, #134


Edited by 123Donna - Jul 01 2011 at 8:12am
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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