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Old 11-04-2015, 08:05 AM   #1
SpitFire
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Vitamin D Testing Frequency

I got my Vitamin D level tested last year after taking a lot of the supplement and it was around 80. Is it necessary to test again every year? If so, do I test it out every year for life?
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8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 11-04-2015, 08:57 AM   #2
Becky
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Re: Vitamin D Testing Frequency

I get mine done once a year. Things change. When you take a vitamin d tablet or sit in the sun with no sunscreen your liver converts it to another chemical and then your kidneys take that chemical and converts it to the usable active. As we age, this process becomes less efficient so you might need to take more vitamin d to keep the process going
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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 11-04-2015, 09:00 AM   #3
jaykay
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Re: Vitamin D Testing Frequency

How often do you see your oncologist? Every time I go to get routine bloodwork, I get my Vit D level tested.
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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 11-04-2015, 11:05 AM   #4
SpitFire
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Re: Vitamin D Testing Frequency

Before I started chemo, I asked my oncologist about vitamin D. He turned around and walked away. I told my BS and he said he wouldn't test my vitamin D levels either. I then asked my family physician a year later to test it and he did. I had been supplementing and didn't want to over supplement. I have to fight really hard to get basic care. I don't feel like my doctors care. I am getting blood work tomorrow and I don't think I am getting my Vitamin D levels tested. I didn't know if it was worth asking for. I see an ob/gyn once/year and my family physician once/year. I dropped everybody else.
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 11-04-2015, 12:19 PM   #5
Yorkiegirl
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Re: Vitamin D Testing Frequency

I think I am way over tested on mine. I see my Onc. once a year and it's done then. I see my Primary Care Doctor twice a year and it's done then as well.
So I get tested 3 times a year. LOL
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Texas
Biopsy Dx'd 3-23-05 Age 48
MRM 4-5-05 w/ 2 tumor's 5cm, and 6 cm (right side)
IDC (poorly differentiated infiltrating ductual carcinoma)
5+/16 nodes
Stage III A
Grade 3
ER/PR-, Her2/neu ++
Ki67 78%
Begin Chemo 5-2-05 4XAC Dose Dense , 4X Abraxane Dose Dense (ended August 05)
28 Rad's ended October 13 2005
Started Herceptin Weekly August 2005 for one year
Had a Simple mastectomy left side after Mamo showed incresed micro-calcifications. Jan. 17 2006.
Brain MRI Feb.2006--All Clear
August 28, 2006 Last Weekly Herceptin.
October 2006--Colonoscopy, 6 Polyp's removed--all B9
PET Scan July 2007
Abdominal MRI Oct. 2007---2 Right Kidney Cysts
Core Biopsy-- Lump on Scar Line 1-10-08---B9
Brain MRI 6-2008--All Clear
PET/CT Scan 6-2008
Sept. 8 2008, 4CM area removed from mastectomy scar line. Proved to be B9.
PET/CT Scan-- July 2009 --All clear
August 17,2009 ---Had Port Removed
6 Years NED -- April 5,2011
DX'd with Melanoma left arm 10-10-2011
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Old 11-04-2015, 05:07 PM   #6
Lucy
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Re: Vitamin D Testing Frequency

My endocrinologist has been ordering this every six months for a while now and my hope is that he will continue to do so because my oncologist doesn't and while my PCP is great, getting her to order anything is difficult, at best.
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Old 11-18-2015, 04:53 PM   #7
SpitFire
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Re: Vitamin D Testing Frequency

When I went in to get my blood tests from my family doctor, he didn't order the vitamin d test, but it was no problem and they ordered it for me. They called me today 26.9! I probably was low when I got diagnosed with breast cancer too. I was supplementing with 11,000 in per day for months before I got tested the first time! I am sicked that both my former mo and bs were so opposed and offended to getting me tested. My bs works at a cancer hospital that routinely tests everyone's vitamin d level. I feel forced to look to driving to another city for basic breast cancer treatment. Theses doctors in my city are way to arrogant. I am so glad I got my vitamin d level tested!
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 11-18-2015, 09:41 PM   #8
thinkpositive
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Re: Vitamin D Testing Frequency

Well it is a good thing you did end up getting your vitamin d lelels tested! I had been getting mine tested every three months when I was first diagnosed. Now I get it tested once a year. I take 5000 I.U.'s which keeps me at a count of 95.

Take care,
Brenda
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8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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Old 11-19-2015, 02:55 PM   #9
Juls
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Re: Vitamin D Testing Frequency

Just found out today that Vit D level not tested since being diagnosed in 2013.
A few months ago I had discussion with my Onc re Vit D & said I was going to start taking it. There was no objection. My reason for taking was that I had read numerous reports on it and it was particularly recommended if on Letrozole.
Today during a chat at the hospital I mentioned that I was taking Vit D (1000 IU a day) and wondered if I should take more! I was surprised to be told that my Vit D level has never been checked. So mentioned again to Onc. who didn't remember previous chat but today noted in my file I was taking Vit D. She then offered to check Vit D level in 3 weeks time! Apparently they are now considering whether to check Vit D routinely for all!!
A step forward?!
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Old 12-11-2015, 10:42 AM   #10
Juls
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Re: Vitamin D Testing Frequency

Had blood test done yesterday for Vit D. Now have to wait for up to a couple of weeks for result.
Managed to have sneaky look at blood results only to see that calcium levels just under normal range & never been told. So will be interesting to see what Vit D level is!
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Old 12-11-2015, 12:29 PM   #11
SpitFire
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Re: Vitamin D Testing Frequency

I just saw the responses! My insurance didn't even bill me for the vitamin d test, but that was the only time I got my blood tested in 2015. My family physician told me to take 5,000 iu and test again in 3 months. I had a thought to take 20,000 iu, but will follow my drs orders. He is smart and I trust him.
Jules - I am glad you are getting your blood work. Maybe you ask for a copy of the results?
__________________
8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 12-11-2015, 03:03 PM   #12
Juls
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Re: Vitamin D Testing Frequency

Hi Spitfire
Only consolation here is that we don't pay for tests!
One of the other ladies taking 10,000 IU a day along with other vits & minerals. Says she has never felt better!

I am working on getting copy of results. Although legally I am entitled to them, actually getting them is not always easy. Hence the sneaky peek at my file yesterday! Took photo on cell phone & studied the results when I got home.
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Old 12-11-2015, 05:55 PM   #13
SpitFire
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Smile Re: Vitamin D Testing Frequency

Way to go Juls!
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8/2013 Diagnosed ER/PR Neg, Her2 Pos
FISH 6.86, Grade 2 (3,2,1), 10-15% Proliferation Rate 4.4cm
9/2013 Port Placement, Sentinal Node Biopsy 1/2 Nodes Positive having no extracapsular extension present
Stage IIb
9/2013 TCH
10/2013 TCHP
1/2014 End chemo!
2/2014 Lumpectomy Complete Response
2/2014 - 4/2014 Radiation
9/2014 Last Herceptin
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Old 12-31-2015, 12:31 PM   #14
Juls
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Re: Vitamin D Testing Frequency

Just got Vit D result. Really surprised to find its at 72. Have only been taking 1000 IU capsule on and off for 3-4 months. Nurse treating me had just had her Vit D checked and she was only 17!
Calcium was just in bottom of range though! Not sure if this signifies anything.
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Old 12-31-2015, 08:21 PM   #15
Nurse4u2day
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Re: Vitamin D Testing Frequency

3 months ago my vitamin d test was at 20.... Just got retested today, so let's see what the new year brings
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]11/13 Dx IDC left breast
11/19/2013 Inflammatory Breast Cancer stage 3c grade 2 Er- Pr- her2+++
Node involvement suspected based on CT
12/13 port placed
12/13 neoadjuvant DD AC xs 4 rounds started
02/14 taxol/herceptin started every week xs 12 rounds
Herceptin for 1 year
Ki67=23%
BRCA1&2 negative
5/06/14 last round taxol/herceptin. Chemo done!!!
5/07/14 clear CT scan
6/11/14 Bilateral Mastectomy Done
6/15/14 8mm tumor post chemo. Removed by bmx
6/15/14 lymph nodes 0/9
6/15/14 officially Cancer Free
7/11/14 emergency surgery to left breast . Wound refused to heal and broke open. New TE placed
7/28/14 emergency medical procedure now to right breast( post op 6 weeks mastectomy ) wound opens.
8/25/14 - 10/07/14 Radiation
11/24/14 CT of Brain clear
01/23/15 One year Herceptin Complete
02/04/15 Diep done
5/01/15 1 year Ct scan- mass in thymus
6/23/15 repeat CT mass in thymus still present
6/30/15 biopsy thymus 7/03/15 mass Benign! Diagnoses Thymic hyperplasia rebound ( chemo at fault, no long term health effects)
7/08/15 phase 2 diep
11/23/15 phase 2b ( reconstructive surgery with lipo)
03/05/18 Vinnie Myer 3 D nipple tattoos complete.
11/19/2018 5 years since Dx of IBC stage 3c remain NED.
11/19/21- 8 years today I officially remain NED and in 12 days I will be having a lymphnode transfer to help decrease some mild lymphedema! Still working, living life and soon to see a day I thought never would happen and that’s becoming a grandparent June 22nd.
11/19/2023 - 10 years since diagnosis and I remain NED
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Old 01-01-2016, 03:31 PM   #16
R.B.
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Re: Vitamin D Testing Frequency

Hi

Hopefully you have seen this thread.

http://her2support.org/vbulletin/showthread.php?t=43711

In terms of supplementation lots of info on grass roots health and vitamin D wiki.



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Old 01-01-2016, 05:08 PM   #17
Juls
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Re: Vitamin D Testing Frequency

Thanks R.B,
Re other thread - Working my way through it.
I live in Scotland so post of August 2015 (Scotland recommending Vit D supplementation) was one of the reasons I started to take supplement. So glad I did as I am 72. I wanted to be in 70-80 range. I think Nurses level says it all for Scotland!! 17 far too low.
Thanks
Juls
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Old 01-03-2016, 03:15 PM   #18
R.B.
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Re: Vitamin D Testing Frequency

HI Juls

I am aware low Vit D is a big issue in Scotland as in most of the UK, only worse.

Low iodine is another common issue. 70% or so of 1000 pregnant women were low in iodine (Avon Study Data). The figure for vitamin D insufficiency in pregnancy is likely even higher.

http://her2support.org/vbulletin/showthread.php?t=53928.

We arguably need to move to more of a risk reward model for assessing intake needs of nutrients such as iodine and vitamin D and how we deal with them; complex; although the level of deficiencies would suggest something is not working at an educational and public policy level; a fundamental rethink is probably needed but the fact it took so long for things like the need for vitamin C and hand washing before attending to childbirth accepted, suggests human nature is not best adapted to acceptance of sometimes 'simple' solutions .

Last edited by R.B.; 01-03-2016 at 03:17 PM..
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Old 01-04-2016, 08:07 AM   #19
agness
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Re: Vitamin D Testing Frequency

Some interesting things I have noted in researching about vitamin D.

Our bodies need magnesium in order to activate vitamin D for use in the body. This goes for sunlight or even D2 or D3.

Taking extra vitamin D might not be good if you have other calcium and electrolyte disturbances in your system. Your body may lower your vitsmin D levels to counteract hypercalcaemia in the blood and boosting vit D levels might cause more wasting of bone.

Low magnesium levels affect the parathyroid glands, the main calcium regulation glands in the body. Cancer patients are typically dysregulated in magnesium but even with all the blood tests we get it isn't often tested. An RBC magnesium level is more accurate if stores in the body but like many nutrients in the body, the range is boosted up to help keep the body in homeostasis. A lowered serum level is associated with low stores -- I saw this happen in my own body and this was after monitoring my magnesium throughout treatment by my naturopathic oncologist and researching me this's to improve magnesium absorption in my body for a year. If your serum is low you are low.

Now for my totally crazy finding, resistant starch improves magnesium and affects vitamin D absorption in the gut. Resistant starch means the body doesn't fifest it for use in the body but your gut flora does use it -- it's about feeding good stuff to your microbiota. Resistant starch can be found in potatoes, corn, wheat flour, acorn flour -- but the trick is you have to eat it cold. You can take a spoonful of Bob's Redmill potato starch like I do, it won't throw your blood sugar and it only tastes faintly of potatoes, or if you aren't on a special diet try adding in 1/2 potato worth of potato salad or the equivalent of cold pasta salad or maybe cold polenta (dotorimuk anyone?) into your diet. Read more:

http://www.vegetablepharm.blogspot.c...ge_31.html?m=1
__________________
  • 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 01-04-2016, 09:27 AM   #20
Juls
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Re: Vitamin D Testing Frequency

I expected my Vit D to be very low ( Live in Scotland & Cancer) even though I had been taking a 1000 IU capsule on and off since August. Result of test = 72. . Unfortunately not tested when first diagnosed so can't compare. Magnesium is 77 so ok and Calcium just in at bottom of range (2.19/2.33)]. I am a little concerned about calcium being low but can't find any info on this. Any suggestions?
Will read up on resistant starch.
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