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Old 02-07-2013, 03:15 PM   #1
europa
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Interesting Presentation on Vitamin D

http://www.grassrootshealth.net/medi...ndon032311.pdf
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DX 10/2011
PET Scan + MRI 10/2011
Lumpectomy 11/11/11
Stage 2B +++ ER+(10%), PR+(5%), HER2+++(1 positive node, 1 micromets to second node)
AC started 12/2011 ended 1/2012
Taxol + Herceptin weekly for 12 weeks ended 4/2012
30 zaps of radiation done 6/2012
Tamoxifen 6/2012
every 3 weeks of Herceptin for another year.
Metformin Trial 8/12
10/12 MRI- CLEAR
01/13 BRAIN MRI- CLEAR!
01/13 Neck MRI- CLEAR!
FINISHED HERCEPTIN 1/9/2013...Woot Woot
Starting Walter Reed Vaccine Trial 2/13
CT Scans + ultrasound of abdomen CLEAR-5/13
02/2015 through 11/2015 emergency D&Cs for Tamoxifen induced uterine polyps which caused uncontrollable hemorrhaging
12/2015 blood clot to left leg caused by Tamoxifen. No longer taking it. On Xarelto, a blood thinner
12/2015 Ablation to prevent hemorrhaging from potential issues with Tamoxifen residue in my system
1/2016 continuing journey without hormonal therapy. Reevaluating the option of a hysterectomy and oopherectomy.
4/1/2018 2mm stroke. Yes, stroke! No cause ever found but they believe it was a migraine that went bonkers and created a tiny clot. No deficits. I was back to normal with 24hrs. Now on baby aspirin for life.
7/27/2018 hysterectomy and oopherectomy
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3/22/2019 Vtach, almost died. Cause unknown.
7/22/2019 New perky boobs put in
7/21/2020 Off of all drugs but a baby aspirin because of the stroke in 2018.


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Old 02-23-2013, 06:10 AM   #2
Ellie F
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Re: Interesting Presentation on Vitamin D

Really interesting, thanks for posting.
Ellie
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Old 02-23-2013, 06:52 AM   #3
jaykay
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Re: Interesting Presentation on Vitamin D

Interesting. I take 2000 vit d a day as well as 1500 calcium. My onc says that sometimes my d is too high and cuts me back to every other day.

Does anyone know what is considered too high and ramifications ?

Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 02-23-2013, 06:59 AM   #4
Becky
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Re: Interesting Presentation on Vitamin D

I do not know the units of measure but the normal range in the blood is 32-100. Do you know if you are above 100? Remember, ranges are also established by testing lots of people. Who knows how the normal range was established.
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Kind regards

Becky

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 02-23-2013, 09:54 AM   #5
jaykay
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Re: Interesting Presentation on Vitamin D

Had to look up my bloodwork! Never above 100, but highest has been 82. That seems to be when she says to cut down a bit. I think she likes it when I'm between 60-70.

I also have osteopenia (thanks to early menopause and femara) and was ready for my DEXA and next shot of Reclast from my endocrinologist when I recurred. The Reclast stabilized me for 2 years. Figured I had bigger fish to fry and would get to that later.

Thanks

Janis
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March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 02-23-2013, 11:28 AM   #6
Becky
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Re: Interesting Presentation on Vitamin D

Everyone is different. I am stressing that because I take 4000 iu per day and only test at 46. I am getting more and more convinced that lack of Vitamin D was part of the equation for me. My mom got BC and tested at 0. My sister got DCIS and tested at 0.

My daughters got tested and my 26 yr old tested at 8. She is taking 4000iu per day now but hasn't retested in 2 yrs because of lack of medical benefits but she is probably running ok. Other 2 daughters test in the high 30s but I now make sure they take 1000iu 3X per week.

My cousin also got BC and tested at 0. I am not saying this caused our BC but it might be a factor for some of us. All of us who got BC had bad bones too but since my supplementation program that started after chemo and rads were over (over 8 years ago), my bone density reversed (while on Arimidex no less) to the normal range so I could (and didn't need) to continue on Zometa.

Peace
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Kind regards

Becky

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 02-23-2013, 11:37 AM   #7
StephN
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Re: Interesting Presentation on Vitamin D

WOW, Becky, I have never heard of anyone testing for vitamin D at 0 - zero. How could that be? Does your body not process it from either the food you ingest or the supplement? That is an odd family finding.

I have cut back from 2000 IU per day now that I am stable between 60 and 70, which my onc says is sufficient. When I originally tested a few years back the level was 31, with a multi-vitamin supplement, but no other D added.

I just had an analysis, and had thought I would be needing to add in the Carlson's D drops that I do in the winter time. But only once a week right now.
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"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.

Last edited by StephN; 02-24-2013 at 11:08 AM..
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Old 02-23-2013, 12:32 PM   #8
jaykay
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Re: Interesting Presentation on Vitamin D

Really interesting how all of us are so different. I don't think I was tested until about 7 years ago and I was pretty low at 20-ish. Both onc and endo were concerned, but like Steph, they like it around 60-70.

Bone density increased on arimidex? Go figure.
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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Old 02-23-2013, 05:42 PM   #9
Becky
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Re: Interesting Presentation on Vitamin D

I have no idea of my starting number either. For my mom, sister and cousin - all got Vitamin d IV drip and then had to take the mega 50,000iu per week (one weekly pill) for 6 weeks. My sister is diligent she does listen to me about D and figures that maybe she dodged a bullet by only having DCIS. My mom, not so good. I don't keep up with my cousin much. She only called me when she was diagnosed and going thru treatment. She is almost 5 years out now. I do not think we process it well and need alot. Like I said, my 4000iu per day only gets me to 46 but I can live with that. I did think I might do 5000iu but I'm not too sure.
__________________
Kind regards

Becky

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 02-23-2013, 10:54 PM   #10
JennyB
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Re: Interesting Presentation on Vitamin D

I was tested by my onc and my level was 125 I was supplementing with 1000iu drops so he asked me to back it off I will be tested again in March so will be interesting to see how much it has dropped by.

I live in North West Australia, where it is stinking hot for about 9 months a year - so maybe that will keep the level up too?

Jen
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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Old 02-24-2013, 05:38 AM   #11
Becky
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Re: Interesting Presentation on Vitamin D

It could be you are getting lots from the sun. Exposed skin without sunscreen produces vitamin d. All you need to do to make 20,000iu is 15-20 minutes with arms, legs, face exposed (with no sunscreen).

I will say as you get more and more tan, you do not make as much vitamin d which is why those with dark skin such as African Americans or some Hispanic populations can be low in D. Skin color protects against burning but also assists in the prevention of D.

So Jenny, if you are outside alot, you can see that you can be making alot. This is why I question if there should be an upper limit to D because too much may not hurt you. (But I would listen to any doctor about supplementation - like the cutting back idea).
__________________
Kind regards

Becky

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 02-24-2013, 08:39 PM   #12
rhondalea
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Re: Interesting Presentation on Vitamin D

Vitamin D is genetically mediated. This is why some people can get by on 1000-2000 IU/day and others (like me, because I have several mutant snps in VDR) need at least 6000 IU/day (which gets me to 63; 10000 IU gets me to the mid-80s).

http://www.snpedia.com/index.php/VDR

Okay, that's not really the right link. It's this one:

http://www.snpedia.com/index.php/Vit..._Insufficiency

Links to news about recent studies:

http://www.medicalnewstoday.com/releases/255472.php
http://www.medicalnewstoday.com/releases/253322.php
http://www.eurekalert.org/pub_releas...-nde112212.php

There are quite a few others, but I picked the most recent three.
__________________

2/6/09 Core needle biopsy: negative; Mammos through 2010: no change
3/30/11 Pea-sized lump in left breast at site of prior biopsy; mammo negative, sonogram not so much
4/14/11 Core needle biopsy: negative for cancer
5/18/11 Excisional biopsy 1.2 cm tumor, LVI, positive margin; ER+60%,PR+20%,HER2/CEP17 5
6/15/11 BMX: Left DCIS & LH; Right ADH; SNB: 2/3 nodes: 1.4 cm and 1 mm; ALND L1&2: 0/10; Stage IIa, Grade 3
7/14/11 CT/Bone scans NED; MUGA 66%
7/19/11 Biweekly dd AC w/Neulasta; done 8/30/11
9/13/11 Transfusion (Hemoglobin 8.6); MUGA 64%
9/20/11 Start Taxol + Herceptin; Taxol done 12/6/2011; continue Herceptin until 9/4/2012
12/27/11 Radiation - 6 weeks; 2/27/2012 - DONE! Yayyyy!
2/29/12 Start Tamoxifen 20 mg/day; continue until 2/28/17
5/16/12 Start five-years Metformin trial
6/19/12 MUGA 61%
8/21/12 Brain MRI NED (head still hurts, brain still fogged)
9/4/12 Herceptin done!
9/6/12 Port out!
7/11/13 Aricept 5mg for cognitive impairment; increased to 10mg as of 8/23/13; back to 5mg 12/2013
5/2014 Add Namenda 7mg
9/2014 Stop Aricept and Namenda; Neuropsychological evaluation
10/24/14 Start cognitive rehabilitation therapy

Last edited by rhondalea; 02-24-2013 at 08:43 PM.. Reason: wrong link
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Old 03-13-2013, 07:14 AM   #13
JennyB
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Re: Interesting Presentation on Vitamin D

Just thought I would update you with my new blood test levels - 140! Onc has asked me to stop all supplementation but to fair I have been pretty lax with the VitD drops and probably only take once a week at the moment anyway!
Must be the aussie sun - it is over 35'C ( 96'F) most days at the moment! Can't wait to go the cold of the UK in a couple of weeks!
Jenny
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy

Praying the Herceptin is as good as its hype!!
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