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Old 11-06-2007, 07:20 PM   #1
karen raines hunt
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vitamin D deficiency

Hi,

I saw my oncologist today for a check up and she told me about an article that appeared in the New England Journal of Medicine this past summer. The article states that many women on aromatase inhibitors are vitamin D deficient despite taking calcium and vitamin D supplements. My oncologist is testing vitamin D levels in all of her patients on AIs. If the number is below 30, she is prescribing medicinal vitamin D.

Karen
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Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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Old 11-07-2007, 03:38 PM   #2
Hopeful
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Hi Karen,

Is this a blood test? Does insurance usually cover it?

Hopeful
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Old 11-07-2007, 08:57 PM   #3
Chelee
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Karen, I hadn't heard about the article your referring to but feel its a good idea to test vitamin D levels for obvious reasons. I'm not on a AI at present but due to other issues I'm having I was seen my an Endocrinologist & one of the things he tested on me was my vitamin D level. Which he told me I was GREAT & I just got my records & found out techically I'm low. I'm right at 29. You should be 30 or above.

Hopeful, this was a blood test and my insurance company had no problems covering it. I think it would be a good idea to check all women's vitamin D level rather their on an "AI" or not. I'm glad to hear onc's might start checking our *D* levels.

Chelee
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DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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Old 11-07-2007, 08:58 PM   #4
karen raines hunt
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Yes, this is a blood test, but not always checked, has to be specifically ordered. My insurance is covering it, I think, I hope.

Karen
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Karen Raines Hunt
Dx April 2005 at age 46
stage 3A, very large (12cm) tumor
2 positive axillary lymph nodes
ER+/PR+, Her 2 +++
Bilateral mastectomy, radiation, reconstruction, A/C, Taxol, Herceptin, Tamoxifen, Aromasin
5 yrs since diagnosis and NED
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Old 11-08-2007, 08:31 AM   #5
dlaxague
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AI's, Vitamin D, and pain - your experience?

Hi all,

This possible link between AI use and vitamin D deficiency is interesting. I think that the original article/research was about deficiency being associated with more bone loss while on an AI. But I've also heard of women who had significant improvement in their "musculoskeletal" pain, another side effect of AI's, when they took a Vitamin D supplement. On the other hand, I've never heard that the musculoskeletalpain side effect has any connection to the bone loss one. There may be lots of interconnected things going on?

So the question - did anyone begin Vitamin D supplementation and notice an improvement in the AI achiness and stiffness?

And another question - if you've been on an AI long enough to have bone density measured before and after/during - compare your degree of bone loss (if any) to your level of musculoskeletal pain, please.

I'll start: Moderate pain during AI use, no significant bone loss (I'm overweight, physically active, strong family hx for osteoporosis). No experience with Vitamin D supplementation while taking the AI. Celebrex and yoga helped.

Thanks,
Debbie Laxague
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Old 11-08-2007, 08:33 AM   #6
dlaxague
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Vitamin D deficiency - osteoporosis vs. pain

Hi all,

This possible link between AI use and vitamin D deficiency is interesting. I think that the original article/research was about deficiency being associated with more bone loss while on an AI. But I've also heard of women who had significant improvement in their "musculoskeletal" pain, another side effect of AI's, when they took a Vitamin D supplement. On the other hand, I've never heard that the musculoskeletalpain side effect has any connection to the bone loss one. There may be lots of interconnected things going on?

So the question - did anyone begin Vitamin D supplementation and notice an improvement in the AI achiness and stiffness?

And another question - if you've been on an AI long enough to have bone density measured before and after/during - compare your degree of bone loss (if any) to your level of musculoskeletal pain, please.

I'll start: Moderate pain during AI use, no significant bone loss (I'm overweight, physically active, strong family hx for osteoporosis). No experience with Vitamin D supplementation while taking the AI. Celebrex and yoga helped.

Thanks,
Debbie Laxague
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Old 11-08-2007, 08:36 AM   #7
dlaxague
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oops

Sorry - don't know how that double-post thing happened. I think my server is having issues. Usually it's the opposite - the entire post disappears altogether, which I take as a sign that it's time to be quiet (smile).

Debbie
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Old 11-08-2007, 03:36 PM   #8
Linda
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Hi all:
My onc is testing all her bc patients for Vit D levels and is advising supplements if levels are low. She believes that a high Vit D level may be protective against recurrance. I'm hormone neg, so don't take AI's, but am taking 7,000 units of D a day.
Linda
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Old 11-08-2007, 03:42 PM   #9
KellyA
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Hey there,

I don't know if this is a coincidence or not, but I started taking a vitaminD tablet with my calcium about 1 month ago and I have noticed a drastic reduction in my "bone" pain and achiness. It is almost non-existent now. Could be anything, but I sure do find this interesting.

Love, Kelly
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dx'd 05/06, 37 years old
er/pr-, Her2+, grade 3
double mastectomy, immediate reconstruction- implants
Stage 2b, 2 tumors- 2.2 cm and 0.6 cm, 3/5 + nodes
all scans clear
genetic testing- negative
06/06 began dd A/C x 4, 12 weekly Taxols w/ Herceptin
30 rads
Herceptin weekly x 1 year
Herceptin completed 08/07
Port removed 12/26/07 MERRY CHRISTMAS!!!!!!
05/17/08 Two year anniversary NED

"We gain strength, courage, and confidence by each experience in which we really stop to look fear in the face... you must do the thing that you think you cannot do."

-Eleanor Roosevelt

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Old 11-09-2007, 12:25 AM   #10
harrie
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My oncologist has recommended 2,000 IU of Vit D per day.
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 11-09-2007, 09:50 AM   #11
SoCalGal
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Vitamin D very important

I take (5) pills a day - 5000 iu total, taken all at once with largest meal for better absorption. I don't seem to easily absorb D. I was on Femara for a couple of years - maybe that's why.

I've had blood tests for Vitamin D twice and my levels are rising but not high enough to be anti-cancer. He just upped my dose, and he'll check me again in a month. It's part of the routine blood draw to request Vitamin D Hydroxy Levels - or something like that. The oncologist should know what to request from the blood lab.
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 11-10-2007, 10:16 AM   #12
Smiley
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Vitamin D

I've been watching Dr. Oz on the Oprah show and just bought his book. He said on tv that vitamin d significantly lowers risk of colon cancer and may do so in other cancers. He also said anyone with MS (which I have) should be on vitamin d. I haven't starting reading the book yet but it may be something you want to check out. Best of luck.
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Old 11-11-2007, 10:34 PM   #13
TSund
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Does anyone have the stats from this study? Presumably the women on AI's have higher ER%, correct? So does this study compare ER+ on AI's to ER+ not on AI's? Do they compare to women on Tamoxifen?

Has there been study's linking ER+ in particular with vit D deficiency?

Are all forms of BC generally equal in terms of vitamin D deficiency?

Lots of questions....
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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