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Old 09-23-2015, 09:22 AM   #1
Donna H
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calcium and Vit D supplements

I recently went to an endocrinologist - recommended by my med oncologist to see if there is a reason I have osteoporosis other than early menopause. I am only 51. Menopause happened in my early 40s. He wants me to take calcium and vitamin D supplements, even though my calcium and Vitamin D levels are normal. When I questioned him about that he just sort of looked at me as if to say "Why are you questioning me?" and never did provide an answer. So I thought I'd ask everyone on this site - does it make sense to take the supplements? This is the same doctor that said I had elevated calcium levels in my blood but then changed his mind after he adjusted the numbers for some half explained reason.
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Old 09-23-2015, 11:03 AM   #2
Lucy
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Re: calcium and Vit D supplements

I've been taking vitamin D supplements for about 5-1/2 years now due to low levels. When I went on anastrozole I added calcium to the mix and as far as I know my levels were normal for calcium. I've stopped taking the anastrozole but I still take both the vitamin D (prescription strength) and calcium (that has added vitamin D included). It probably won't hurt you to take the supplements but it also wouldn't hurt to get a second opinion. Personally I don't like doctors who have issues with me asking questions - I've been known to fire those "professionals".

Actually the more I think about it the more I think taking the supplements would be a good idea because they kind of work together and are more effective if you take both (at least that's my understanding anyway). You have osteoporosis already so I think you need something. I still would probably get a second opinion to get answers since the one doctor wants you follow orders without question.
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Old 09-24-2015, 08:25 AM   #3
Yorkiegirl
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Re: calcium and Vit D supplements

I take the supplements every day. I also have very severe osteoporosis and have to take medication for that and it is required that supplements be taken. I have had osteoporosis since my treatment 10 yrs ago. I was 49 at the time.
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Old 09-24-2015, 10:19 AM   #4
Juls
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Re: calcium and Vit D supplements

I started taking Vit D3 recently after reading an Oxford journal report on AI's. It suggested Vit D supplement worthwhile when on Femara.
Since then I have read various reports that our Vit D & calcium levels in general not high enough. There is also quite a difference between average and optimum range! So probably a good idea for all of us to take extra.
Just recently in Scotland, Health Board recommending extra!!

PS Lucy - your comment re professionals made me laugh - could do with you at some of the clinics here!!
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Old 09-24-2015, 10:53 AM   #5
tricia keegan
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Re: calcium and Vit D supplements

I was also told to take Vit D and calcium as they benefit each other by taking together. I had Osteopenia five years out taking Arimidex but have been getting a yearly iv of Zometa which has resolved it, just stopped Arimidex last summer after eight years.
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
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Old 09-24-2015, 01:57 PM   #6
Donna H
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Re: calcium and Vit D supplements

Hi Tricia-
Did you experience any side effects from the Zometa? This doctor wants me to get the Prolia shots but after the past many months of side effects I am not in a hurry to experience any new side effects or take any extra drugs. All I take now is Femara. I dont even take vitamins, except for biotin for nails and hair (which are still a mess, especially my nails.) I get a lot of calcium in my diet and I exercise very frequently. I hate not taking the advice of doctors but I just can't get on board with this.
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Old 09-24-2015, 02:43 PM   #7
tricia keegan
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Re: calcium and Vit D supplements

Hi Donna,

I tried Fosamax pills at first but hated those, I only had flu like symptoms for a day or two the first time I had Zometa but after that nothing really, I have a long trip there so only felt a little tired from that. I also am very active and have been for years and have a lot of calcium in my diet but I think at my age now (middle fifties) it makes sense to do what I can to help prevent Osteoporosis and hope this reassures you. My friend (stage iv) had a hip fracture and I remember how painful and debilitating it was for her so would prefer a few side effects to going through that.

P.S I just remembered another friend with Osteoporosis mentioned a drug called Optruma yesterday, I haven't had a chance to look it up yet but just thought I'd mention it.
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 09-24-2015, 03:17 PM   #8
Juls
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Re: calcium and Vit D supplements

Donna
Re nails -
I have found condition of nails to be better since taking Vit D3. They seem stronger and don't peel or split as much.
Also if you have (or had) cancer - some nutritionists suggest that Vit D should be in optimum range not just normal. Is this why Endo suggesting this? Think the normal range is about 40 and the optimum is 70-100 ng/ml. Like you I prefer not to take anything but think Vit D might just be worth taking. It's easy to take and no side effects.
One of the Ladies at my clinic refused further zometa but has upped Vit D3 and calcium - says she feels better!
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Old 09-29-2015, 09:37 PM   #9
SoCalGal
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Re: calcium and Vit D supplements

I take Vitamin D3 and D & K. Vitamin K2. Plus a long list more. The D's I take along with calcium. I also take a product called CuraPro which is a whammy dose of curcumin. I see an integrative onc at UCLA who prescribes a long list of vitamins and supplements for me. I hate taking them every day, divided doses, blah-blah and they cost a lot but seem to help in keeping me "healthy" (8+years stage4) I would be more specific on my list and dosing but everyone is different and it's better to be guided by a Dr, if possible...
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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 and brain MRI shows improvement, resolved areas and nothing new. switch to single agent ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful. working on QOL and managing nausea.
3/18/20--->Just did cycle #5
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Old 09-30-2015, 12:58 PM   #10
agness
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Re: calcium and Vit D supplements

I recently came across an interesting mention of D3 supplementation in relation to parathyroid dysfunction. The patient, someone who suspected parathyroid illness and after finally having surgery to remove the problematic glands found that her uterine fibroids disappeared.

I've got a bucket of medical article links about the parathyroid, which is a calcium regulating group of glands, in relation to mammary gland development, pregnancy, lactation, oncogenesis and mets.

So, this woman suggested that taking more Vit D when your levels are low might not be best -- that low Vit D might be a protective mechanism to lower bone loss and blood calcium levels.

What is more crazy about the parathyroids and its associated hormones is that too much or too little aren't good, that calcium and Vit D levels up or down might be indicative of disease -- but also that some patients that looked like they had normal levels but mets had remission when their parathyroids were removed. So it seems like there it more here than meets the eye.

PS - low magnesium can affect parathyroid functioning too, and also without enough K2 your body won't even know where the calcium is supposed to go. Magnesium, calcium, phosphorus, K2, Vit D3 (plus other trace nutrients) all work in concert towards bone health.
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  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 09-30-2015, 01:58 PM   #11
KDR
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Re: calcium and Vit D supplements

As I understand it from my integrative doctor, cancer patients are better off with much higher numbers on Vitamin D, and there are many Vitamin Ds to look at. I speak of Vitamin D3.

Karen
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Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
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Old 11-01-2015, 07:55 AM   #12
agness
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Re: calcium and Vit D supplements

Evidently vitamin D absorption issues may persist and appear to be influenced by having gone through chemo. There are pubmed citations linked, I found more BC links at PubMed as well.

http://m.naturalnews.com/news/037663...eficiency.html
__________________
  • Dx 2/14 3b HER2+/HR- left breast, left axilla, internal mammary node (behind breast bone). Neoadjuvant TCHP 3/14-7/2. PCR 8/14 LX and SND. 10/21-12/9 Proton therapy to chest wall.
  • Dx 7/20/15 cerebellar met 3.5x5cm HER2+/HR-/GATA3+ 7/23/15 Craniotomy.
  • 7/29/15 bone scan clear. 8/3/15 PET clean scan. LINAC SRS (5 fractions) Sept 2015. 9/17/15 CSF NED, 9/24/15 CSF NED, 11/2/15 CSF NED.
  • 10/27/15 atypical uptake in right cerebellum - inflammation?
  • 12/1/15 Leptomeningeal dx. Starting IT Herceptin.
  • 1/16 - 16 fractions of tomotherapy to cerebellum, break of IT Herceptin during rads, resume at 100 mg weekly
  • 3/2016 - stable scan
  • 5/2016 stable scan
  • 7/2016 pseudoprogression?
  • 9/2016 more LM, start new chemo protocol and IV therapy treatment with HBOT
  • 11/2016 Cyberknife to temporal lobe, HBOT just prior
  • 12/2016 - lesions starting to show shrinkage
  • 8/2017 - Stable since Dec 2016. Temporal lobe lesion gone.
  • Using TCM, naturopathic oncology, physical therapy, chiro, massage, medical qigong, and energetic healing modalities in tandem. Stops at nothing.
  • Mother of 2 boys - ages 7 and 10 (8/2017) and a lovely partner with lots to live for.
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Old 11-01-2015, 11:40 PM   #13
Pamelamary
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Re: calcium and Vit D supplements

I am happy with Vitamin D, but would prefer to have my calcium naturally, through my diet. Have heard there may be issues with Caltrates, relating to heart function.
Prolia (Denosumab) probably has fewer side effects than Zometa and is easier to administer; with the low dose given as Prolia, you probably don't need to worry too much about the nastier long term problems.
Best wishes.... Pam
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
2/19: Happily still stable on Herceptin, Letrozole and 3 monthly Zometa.
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Old 05-30-2016, 02:35 PM   #14
Jackie07
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Re: calcium and Vit D supplements

There is another very long Vitamin D thread http://her2support.org/vbulletin/sho...vitamin+thread with lots, lots of information. But I saw this one while searching for KDR's old posts.

I was told to take Vitamin D3 and Calcium supplement about a month ago when the test showed a 5% decrease in bone density.
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