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03-03-2009, 11:03 AM
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#21
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Senior Member
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
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Referring to earlier post by RB
I have had my vitamin D 25, hydroxy test since I posted earlier, and it came back at 50 (middle of normal range). I found that interesting, because ever since diagnosis in 2002 I have advocated the need for adequate exposure to sun and getting enough vitamin D, to the point that if the sun shines here in winter at all (even at 20 degrees F) I am outside on my porch in my swimsuit. I've also been taking 400 IU consistently. I increased my D3 supplement to 1200-1600 a while back, and even with all of that my test came back still just mid-range of normal. I am going to make sure I take somewhere between 1600 and 2000.
Here is something RB posted a while back about vitamin D. that was pretty interesting, as well as some responses to his post.:
http://her2support.org/vbulletin/sho...t=vitamin+eyes |
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03-03-2009, 12:47 PM
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#22
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Thanks, Alaska - for posting that link to the webcasts R.B. recommended. I had meant to go back and review this thread again.
Especially to try and find what the EFFECTIVE AGAINST TUMOR ACTIVITY vitamin D level is thought to be.
This is the nitty gritty of this discussion to me since I am a stage IV NED and would like to stay that way!
__________________
"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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03-03-2009, 01:48 PM
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#23
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Senior Member
Join Date: Apr 2007
Location: Mississippi
Posts: 600
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My GP told me that the blood test wouldn't tell me anything because it did not reflect tissue levels. I am going to discuss vit. D with my oncologist when I see him. Still, it feels like my doctors are in the dark ages when it comes to nutrition. I would love to have a doctor seriously discuss nutrition and supplements with me, instead of saying that I should just eat healthy and take some calcium and maybe a multi vitamin.
Leslie
__________________
In the world of destiny, there are no statistics.
Jan. 26- mammogram and ultrasound- suspicious lump
Mid-February- lumpectomy, infiltrating ductal carcinoma ~4.5 cm and a 1 cm DCIS, did not get clear margins, did not check lymph nodes
ER+/PR+, her2 +++, nuclear grade 3 of 3
February 20-PET scan showed something on liver. No biopsy.
March- Started carboplatin, herceptin, taxol on a four week cycle
May 3- Pet scan, with intent to do a biopsy, found nothing, liver or breast- no biopsy because there is nothing to biopsy
June 21- new onc, very concerned that there had been no biopsy,
June 18th-CAT scan, bone scan-negative
August 7th - Brain MRI-negative
August 9th- mastectomy, all pathology negative
January 2008 still NED! New oncologist -herceptin for full year after chemo- until July, and tamoxifen---negative scans since May '07
July 2008-Finished Herceptin!
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03-03-2009, 02:21 PM
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#24
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Hey Leslie -
You bring up a good question. I was thinking that the serum vitamin D was what I would be interested in as that is where I would expect the possible circulating tumor cells to be. However, those sneaky little cells could be hiding in tissues, marrow, etc.
Also I do not know how far down the D breaks and if it can easily traverse the capillary network.
Sheesh! Seems we can never get this doped out!
__________________
"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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03-03-2009, 08:57 PM
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#25
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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thanks Alaska Angel
Thanks for posting the infomation on the videos R.B. originally posted - they were really good! And fun to watch. So much information we have to keep track of and so many supplements to take!
Someday someone should compile the posts on supplements and make a list of what to take and what to avoid. Oh, like I need one more project, but this one is truly worth doing!
Have a great day!
Donna
__________________
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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03-11-2009, 11:30 PM
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#26
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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vitamin d levels are in....
and they don't look good based on everything said here. My level is at 26, I am also low in calcium and potassium. I had the report sent to my internest as well as my oncologist (who ordered it) and she started me on potassium supplements the same day she received it. She indicated my oncologist would be the one to deal with the other abnormalities. And I had a bunch - lows and highs - maybe my oncologist can make sense of them - what it looks like to me just looking up the abbreviations is that maybe I am anemic.
More stuff, more supplements to take, add them to the pile!
I'll keep you posted on what I find out from the oncologist - thank you all for your invaluable help on this!
Best to you all! Donna
__________________
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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