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Old 02-27-2009, 02:32 PM   #1
Donna
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blood test for vitamin D question

Hi amazing group!

I am due for my next check up with my oncologist and I noticed on the blood test she requested a check on my vitamin D levels. I take vitamin D supplements - does anyone know if I should stop taking them before the test in case that would skew the results? I will probably get an answer here quicker than calling her office. :-)

Thanks, Have a GREAT day!

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, 03:31 PM   #2
vickie h
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Hi Donna,
Don't stop taking the vitamin D! Your blood results reflect how much D is in your blood and not taking the D for a few days won't have an effect on that. It takes months, sometimes several, to get your D levels into the 40 to 60 range, which is the normal range. I have been ingesting 10,000 mg a day and my levels went from 45 to 50 after 4 months on that dose. My Onc is watching those levels closely as she wants my levels to increase to atleast 60 (to her, the healthiest levels for me). some of her patients are on 20,000 a day! Good luck and let us know what your results are. Love, Vickie
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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.
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2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
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8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 02-27-2009, 04:04 PM   #3
Donna
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Wow, I had no idea!

Thanks Vickie for posting your response - I had no idea how long or how much it might take to keep vitamin D levels in a healthy range! Wow! I know it's really important for we her-2 people to do this - now I am really interested in what shows up on that blood test!

Thanks so much!

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, 04:22 PM   #4
lizm100
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Hi Donna-

I was instructed not to stop taking my vitamin D for the vitamin D blood test. Although I was taking a vitamins D supplement for many years my doctor still thought my levels were on the low side and increased my dosage by 2,000 iu's to a daily intake of exactly 3,004 iu's.

Hoping all your levels come back perfect,
Liz

Last edited by lizm100; 02-28-2009 at 07:51 AM.. Reason: Corrected daily vitamin D dosage.
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Old 02-27-2009, 04:39 PM   #5
swimangel72
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My oncologist never mentioned testing me for Vitamin D............actually they take blood and never tell me ANYTHING! It's my own fault - I should just ask. Better yet, I should ask for copies of all my blood test reports - I definitely will in April when I get my last Herceptin tx.
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2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
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Old 02-27-2009, 04:58 PM   #6
Donna
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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   #7
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   #8
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!
__________________
"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 02-28-2009, 11:52 AM   #9
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 03-01-2009, 08:33 AM   #10
Midwest Alice
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Haven't been posting lately just reading. Is the Vitamin D you all are talking about Vitamin D3? Wanted to make sure I am taking the right one. D3 Cholecalciferol is what mine is. After reading this, I doubled to 1600 IU. I may add more. I wonder if my onc checks my vitamin D levels when he does my routine blood test?

Thanks my warrior friends, may you be aware of Gods blessings shining on you today!
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04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
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Old 03-01-2009, 11:15 AM   #11
Lida
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blood test for vitamin d question

Hi Vickie and her2 friends,
My vit d. level was at 24, though I was taking over 1000 of d3 supplements per day. My prim. doc recommended taking weekly 50,000 iu d2 for 8 wks and then rechecking. I am on a pretty tough regimen now of Herceptin/Taxatere/Carboplatin and am concerned about additional side effects from the large dose of vitd. An onc I had in the past said this combo (with the vid d) could increase my side effects such as nausea. My nutritional onc. dr. suggested taking 4000 iu per day of d-3 instead. Vickie and any of you on chemo and high dose vit d, do you find increased side effects from the vit d? Any other friends had any side effects from high dose vit d? Thank you so much. Lida
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Old 03-01-2009, 11:28 AM   #12
Shadowpilot
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Hi all,

I take 10,000 mg/day and my levels were at 66 last check. My naturopath thinks that is a low level of normal. Living in the NW, I will continue on this dose until the level gets a little higher and the sun returns for its brief summer. I can't find much on side affects of too much Vit.D. Anyone else?

Sue
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Old 03-01-2009, 03:56 PM   #13
Mary Jo
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Hi Alice,

Yes, I am talking about D3. That is what I take.

Hugs to you,

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

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 03-01-2009, 05:22 PM   #14
Linda
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Vit D

My onc has been testing Vit D levels for some time. She believes that women who've had bc should be on the high end of normal, and most of us are low. I took supplements for a while and ended up having to take 7000 units a day to get my levels where she wanted them (last level was 66.) We continue to test because she believes that too high a level can be damaging. I think the top level would be in the 80's or so (I'm sure someone else will know.)
I'm happy to keep taking the supplements. They're (d3) easy to take, cheap and I have no adverse effects. I actually think I'm not getting colds and flus when everybody around me is sick.
Linda
(dx 05, stage 3a)
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Old 03-02-2009, 03:42 PM   #15
StephN
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Got my result today from last weeks blood test for Vit. D level. This is AFTER the 8 week megadose of 1 50,000iu cap per week.

Number is up to 50 - wow, the BIG 5-0.

Up from 30 pre-megadose.

So now Shadowpilot has me wondering if I need to really do more than the 4,000 iu/day I was planning???
(Since we share the same climate and can't always drop whatever we are doing and run outside when the sun does decide to shine!)

I was figuring on trying to hold around the level of 50.

Will see my med onc in a couple of weeks so will decide with her, since my general doc is only recommending the standard 1,500 iu supplement per day.
__________________
"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 03-02-2009, 04:27 PM   #16
schoolteacher
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Stephanie,

Glad to see that your level has gone up. Hope mine is that high when he checks my levels next week.

Amelia
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Old 03-03-2009, 11:03 AM   #17
AlaskaAngel
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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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Old 03-03-2009, 12:47 PM   #18
StephN
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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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Old 03-03-2009, 01:48 PM   #19
fauxgypsy
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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
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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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Old 03-03-2009, 02:21 PM   #20
StephN
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Question

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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