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Old 03-23-2018, 10:45 PM   #1
VDC
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vit-D puzzle?

What are the current thoughts on Vit-D? I just requested a plethera of labs and some have already been processed (just had blood drawn today) What surprises me is my vit-D is low again at 19.3 ng/mL AND I have been taking 5000 IU's of vit-D every day for almost two years! last year my vit-D on this same supplementation was 67 ng/mL and now with no changes in consumption, it has dropped to 19.3 I am very very puzzled. Does anyone have any idea what could cause such a dramatic drop in vit D even while on significant supplementation? Are there any things that I might be doing that can cause vit-D to be reduced? Very very puzzled......
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Old 03-24-2018, 09:16 AM   #2
donocco
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Re: vit-D puzzle?

That is a real puzzle. Maybe there a problem with absorption has occurred. No idea why. Ill research this and see what I find. Perhaps your doctor can prescribe the 50,000 unit Vitamin D gelcap once or twice a week. This might increase the levels significantly. Get the test rechecked. Lab errors do occur. Once, taking a physical for a pharmacist agency I was working for I was diagnosed as Hepatitis B positive. The test was done again and this proved to be untrue.

Paul
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Old 03-24-2018, 09:41 AM   #3
donocco
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Re: vit-D puzzle?

I found something intersting. Low calcium intake is one cause of low levels. If the calcium levels fall the body secretes parathyroid hormone and this hormone changes 25-Hydroxy Vitamin D (what is measured) to the more active Vitamin D form calcitriol. The body makes calcitriol from the 25 hydroxy form so the measured Vitamin D levels drop. Maybe you can increase your calcium intake. Also take the Vitamin D with some fatty food ie in the evening before dinner. Too high a blood calcium also drops the 25 Hydroxy Vitamin D levels due to the thyroid release of a hormone called Calcitonin, so it works both ways.
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Old 03-24-2018, 11:36 AM   #4
VDC
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Re: vit-D puzzle?

Great idea! ...but my calcium has stayed steady at about 9.5 or so. No changes there! I'm wondering if the brand of vit d I am taking isn't well absorbed. I did change brands about 6-9 months ago. But if it isn't that, then I am completely stumped!
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Old 03-24-2018, 03:31 PM   #5
SoCalGal
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Re: vit-D puzzle?

As I understand it, VIT D is a fat absorbed vitamin, important to take with largest meal. I use Douglas laboratories brand, LIQUID D and K, LIQUID Vitamin D-3 along with Vitamin K2. Right now, I'm not taking any vitamins or supplements but I've taken them pretty regularly over the past decade.
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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 03-24-2018, 08:29 PM   #6
Becky
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Re: vit-D puzzle?

Did you change brands? Just wondering as my daughter was taking a multi and got blood work that said her potassium was off the charts. They reran and still off the charts. So they said to stop the multi for a week and re did. All was normal. So a brand change could be the culprit. We trust our supplements and vitamins bit who knows.
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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
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4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
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