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Old 02-27-2009, 04:58 PM   #1
Donna
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Location: Shingle Springs, CA - near Sacramento
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I knew I'd get quick answers here! Thanks!

I'll keep taking my 1000mg supplement and see where I end up. And I always get a copy of my blood tests, I file them. If I see a high or low marker on it I ask about it. The report is all in code, but there are medical dictionaries online that deciper the code so I know more about what I am looking at.

Donna
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Donna in the Sierra Foothills of California

Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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Old 02-27-2009, 06:29 PM   #2
Mary Jo
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Hello all,

I just had my Vitamin D level and cholesterol levels checked. Both were EXCELLENT. I did not stop my Vit. D before the test and I take 2000 i.u. twice per day - for a total of 4000 i.u. PLUS 400 i.u. in a multi. (I did not take any D the morning of my blood test though) Anyway, my number was either 63 or 68 - I can't remember now....BUT, I was happy with that number. Last years number was 30 something I remember and I wanted it higher so increased my D supplementation.

Good luck to you....

Mary Jo
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Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 02-28-2009, 11:31 AM   #3
StephN
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Wink

Good for you MaryJo - getting your vitamin D level way up like that.

Mine was 30 in December (first time ever checked) and I went on the megadose of 50,000 units once per week for 8 weeks. Had my draw for recheck last week and expect a call this coming week on the results.

If it takes 4,000 iu per day to keep it high, I will follow your example. Seems our diets plus a multi-vitamin are just not enough for some of us.

Hope Donna gets a good number!
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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 02-28-2009, 11:52 AM   #4
Ellie F
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Hi been reading with interest about all your vitamin D levels.My understanding is that tumour cells have increased receptors for vitamin D which is believed to be a substance that can cause their death. Is this correct? Is there any reason why high levels are thought to be especially important for her 2 pos cells? I raised the vit D issue with my onc but he just looked at me like i'd gone mad! Appreciate any info Ellie
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Old 02-28-2009, 01:12 PM   #5
Donna
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this is great - lots of info

I am taking vitamin D because I read that it is a cancer fighter and as I recall it really is good for her2 - I usually save my research information, but can't find it on D. I am surprised at how much everyone is taking to maintain a high level - I thought I was overdoing it at 1000!

This is all great information, thanks so much to all of you!

Donna
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Donna in the Sierra Foothills of California

Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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Old 02-28-2009, 09:22 PM   #6
ElaineM
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Wink blood test for vitamin D question

The blood test I had for vitamin D included how much vitamin D was from supplements and how much vitamin D was there without supplements.
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Old 02-28-2009, 09:28 PM   #7
Debbie L.
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I had been supplementing with 2K IU's for almost six months, plus I'm an outdoor person, and my level in early January was ... 14 (!). Now I'm up to 4K IU's daily but not really wanting to do the blood test again. Maybe I'll try it again in July or August, after lots of outdoor/sun exposure.

So far, most of the evidence on this is not able to differentiate which came first - the chicken (low D levels) or the egg (condition CAUSING low D levels rather than being cause BY low D levels). While it's pretty well-confirmed that low levels are not good - it's much murkier regarding what to do about low levels. While it seems intuitive that supplementing to raise levels must have some benefit, we don't really know that yet. It may (surprise, surprise) be much more complex than that.

Debbie Laxague
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