HonCode

Go Back   HER2 Support Group Forums > Diet and Nutrition
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Diet and Nutrition By popular demand our nutritional message board. This board will be monitored by a Registered RD who is certified in oncology by the American Dietetic Association

Reply
 
Thread Tools Display Modes
Old 04-08-2010, 02:47 PM   #1
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
Question Vitamin D3 question #1

Rich -
Thanks for posting that there is more than one test available to order to check our vitamin D level.

I am wondering if I did not have 2 different tests for my last checks.

My GP ordered my vitamin D checked when I had my last fasting lipid profile in January. My result was 41 after the 12-hour+ fast. Don't know which test was used.

The very next day I was at my cancer center for regular blood draw which happened to also include my vitamin D level. On my result they say that the 25 Hydroxy test was used. Result was 50.4. I had taken my multivitamin and calcium/D supplement that morning.

Curious what anyone thinks about this discrepancy or if that would be a normal variation in a 24-hour period?
__________________
"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.
StephN is offline   Reply With Quote
Old 06-07-2010, 09:30 AM   #2
Cal-Gal
Senior Member
 
Cal-Gal's Avatar
 
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
Re: Vitamin D3 question #1

I just saw this post--
When I know I am going to have a Vit D blood draw, I lay off the supplements for a few days prior---
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

Cal-Gal is offline   Reply With Quote
Old 06-07-2010, 09:22 PM   #3
vlcarr
Senior Member
 
vlcarr's Avatar
 
Join Date: Jun 2009
Posts: 343
Re: Vitamin D3 question #1

I'm having that done on the 24th of this month. I only take a multivitamin. I'm curious as to what this shows. When I asked the nutritionist I met with about taking a Vit D supplement she said to have my onc check it first.
__________________
Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
vlcarr is offline   Reply With Quote
Old 06-08-2010, 06:12 AM   #4
ElaineM
Senior Member
 
ElaineM's Avatar
 
Join Date: May 2006
Posts: 3,142
Wink Re: Vitamin D3 question #1

I think the difference is because you ate food and took your vitamins just before the second test.
The same thing happens when we take tests which include blood sugar (glucose) and cholesterol. Fasting results are lower than non fasting results.
The vitamin D test I get every 6 months breaks the results down into how much vitamin D is from supplements and how much is naturally circulating in my body. Then the two are added together for a grand total.
__________________
Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
ElaineM is offline   Reply With Quote
Old 06-08-2010, 07:57 AM   #5
Cal-Gal
Senior Member
 
Cal-Gal's Avatar
 
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
Re: Vitamin D3 question #1

Vlcarr--

When I first had my Vit D drawn it was low--I increased my supplements it got better within normal range, just slightly.

Then after 3 months it went down again, since then I have it drawn every 3 months-after the second dip I had to increase my dosage.

The only way they know that you need more is to test--so the test will let them gauge how much you need, right now I take 7,500 IU as recommended by my Onc.

The Onc nurses told me that they have not seen one normal Vit D level amongst those being tested--right here in Southern Cal.

I am a huge believer in the connection between Vit D levels and breast cancer---I plan on making this a life long test and supplementation.

Good Luck!!!
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

Cal-Gal is offline   Reply With Quote
Old 06-08-2010, 11:16 AM   #6
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
Re: Vitamin D3 question #1

The recommended vitamin D level has been 400 IU for years. Now, 1,000 mg supplements are available over the counter. For those who are severely deficient, sometimes a prescription as high as 50,000 IU is given for a short period of time as a boost.

Exposure to sunlight on a single day can apparently result in getting a dose of 20,000 or more IU and it is somewhat transient, so there is a reason to try to use a test that measures what I guess might be thought of as the residual level. This likely would be why Steph had some variation in her test results.

It is still all under study. Given that some of the effect of sunshine also happens by way of the light entering the eyes and passing to the pineal gland, where it stimulates the production of melatonin (and perhaps other hormones), and given that we still really don't know for sure exactly what other beneficial effects are achieved with the absorption through the skin, I am personally hesitant to depend heavily upon supplements as the complete approach. It would be interesting to see a trial comparing those who get no exposure to sunlight but adequate vitamin D supplementation, and those who get some brief but daily sunshine (without sunscreen protection) along with supplementation.

But this is one avenue that in the meantime I continue to seriously pursue.

A.A.
AlaskaAngel is offline   Reply With Quote
Old 06-08-2010, 12:24 PM   #7
Cal-Gal
Senior Member
 
Cal-Gal's Avatar
 
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
Re: Vitamin D3 question #1

Hi A.A.-

There is loads of research out there connecting Vit D deficiency to cancer. Both my Onc and my OBGYN both told me about this last year!!!

I agree that it will be interesting to see more studies and I believe that they will happen.

I live in So Cal and get plenty of sunshine-and one of the Onc nurses told me that everyone that is being tested for Vit D is deficient--and that is here in So Cal---

It has also been written that the recommended daily allowances, need to be reviewed and possibly revised-

It all boils down to each person the individual case, that is why I believe in monitoring and getting Vit D tested as part of a persons blood work up--I have told my non-cancer friends to get tested and several came back deficient!!!

My Onc is the one that recommended I increase to 7,500 IU after I was taking 4,000 IU and my numbers werent moving.

For me, I am still on 7,500 until I get it where it needs to be for a cancer patient that is the high side of the normal scale.

I rely on organic whole foods for my nutrition versus supplements, but where I am lacking based on my blood work, I will supplement--especially with what is believed to be the link between breast cancer and Vit D deficiency---

I think it all boils down to a persons choice!!!!
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

Cal-Gal is offline   Reply With Quote
Old 06-08-2010, 12:32 PM   #8
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
Re: Vitamin D3 question #1

I just wanted to reference this link, as RB was so good as to provide it a while back:

http://her2support.org/vbulletin/showthread.php?t=43711
AlaskaAngel is offline   Reply With Quote
Old 06-08-2010, 12:49 PM   #9
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
Re: Vitamin D3 question #1

Hi Cal-Gal,

People just don't get outside as much as they had to years ago, especially up here in a climate that is cold so much of the time. Most of the patients here do test low also.

I listened to a program interviewing 3 dermatologists the other night, regarding the issue of skin cancers from sun exposure. Of course derm docs see an abnormally high number of patients with skin problems/skin cancers, so their perspective has that natural tendency of distortion. They advised putting sunscreen on 20 minutes before going out into the sunshine. What was particularly appalling to me was that it wasn't these doctors who took any time to specifically point out the importance of somehow getting adequate vitamin D if one was going to hide from the sun exposure, but the people who phoned in for the Q/A.....

Preventing skin cancers is important, but I hope that someone can demonstrate whether or not total reliance on supplementation out of a bottle actually works or not, given that so many other diseases seem to be related to adequate vitamin D.

A.A.
AlaskaAngel is offline   Reply With Quote
Old 07-24-2010, 06:49 AM   #10
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
Calculate the amount of vit D in the sunshine where you live

Here is one way to calculate it:

http://www.self.com/fooddiet/blogs/n...-you-need.html
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED
AlaskaAngel is offline   Reply With Quote
Old 07-24-2010, 03:37 PM   #11
Rich66
Senior Member
 
Rich66's Avatar
 
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
Re: Vitamin D3 question #1

Steph,
Did your GP use a different test or lab than the cancer center

Cal Gal,
Why do you stop the D before testing? Me thinks stopping might give unrepresentative results.
__________________

Mom's treatment history (link)
Rich66 is offline   Reply With Quote
Old 07-24-2010, 04:29 PM   #12
Cal-Gal
Senior Member
 
Cal-Gal's Avatar
 
Join Date: Jun 2009
Location: Los Angeles, CA
Posts: 309
Re: Vitamin D3 question #1

Hi Rich,

Don't know why I do that? usually I only stop a day or two prior--
Maybe next time, I won't stop!!!

Thanks---
__________________
DX: 11/08 Age: 53
Surgery: 1/09
Bilat Mastectomy, no reconstruction
ILC-4 tumors-1.7 cm,1.5 cm (2).8 cm
DCIS-11 cm
All tumors Grade 3
All tumors ER-0%/PR-0%
All tumors HER2+
IHC-all tumors Overexpression/borderline
FISH 2 tumors Her2-Negative
FISH 2 tumors Her2+ Equivocal
Stage I, 0/1 nodes
LVI-Indeterminate(treated as positive)
SPR Score 8/9
Ki-67 20%
BRCA genetic test 1/2=negative
Chemo: 6 rounds TAC Feb-June 2009 w/Neulasta
Herceptin: 6/12/09-6/4/10 52weeks
HNPCC genetic test: negative
Port Placement-9/23/09 Port Removal 6/25/10
Echo's every 3 months-All normal
2/09 Staging PET/CT showed 0.2 micronodule upper R lobe-lung-Onc does not think this is mets--
6/5/09 AND 10/09 CT scan 0.2 micronodule unchanged
1/10-PET/CT-uptake in nasopharynx-
1/10-MRI All normal
6/10-Bone Scan-clear
12/10-PET/CT-All Clear-NED
12/11-PET-All Clear-NED

12/12-PET-All Clear-NED
12/13-CT w/contrast Head, Torso-All Clear
12/14-CT w/contrast Head-All Clear
2/15-Core needle biopsy-R scar line

Cal-Gal is offline   Reply With Quote
Old 07-24-2010, 06:34 PM   #13
imdavidson
Senior Member
 
imdavidson's Avatar
 
Join Date: Sep 2009
Location: Los Angeles
Posts: 76
Re: Vitamin D3 question #1

I take a lot of vitamin D, 50,000 IU every two weeks. I'm not totally convinced that mega dosing like that is the right way to go versus taking a smaller amount daily, but my blood level is really good, about 55 ng/mL, so I'm happy about that.
__________________
Idelle Davidson
Co-author (with Dr. Dan Silverman at UCLA) of "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus" (Da Capo Lifelong Books, 2009). Amazon. www.YourBrainAfterChemo.com.

ER/PR negative/HER-2 positive
imdavidson is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 12:04 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter