| Author |
Topic Search Topic Options
|
sparrow
Groupie
Joined: Feb 09 2008
Location: United States
Status: Offline
Points: 47
|
Post Options
Thanks(0)
Quote Reply
Topic: Vitamin D Status Posted: Jul 17 2008 at 2:44pm |
Since there is so much interest in Vitamin D, not only in relation to breast cancer but other diseases as well, I thought it would be interesting to see if we are getting our blood levels checked and what those numbers are looking like. The test to be asking for is the 25(OH)D3.
When you vote, I would be interested to know if your doctor has advised supplements or what other recommendations are being made to you. Just as it is not good to have a Vitamin D deficiency, it is also dangerous to have elevated levels that could be toxic to your body. It is best to be tested and under medical supervision when adjusting levels.
Please share your thoughts and concerns about this topic.
|
|
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
|
 |
trip2
Senior Member
Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 18 2008 at 6:23am |
|
Sparrow I have gone thru bc twice and I had two different Oncs whom never brought up the subject of Vitamin d testing. Now my Onc may say something since it is is all over the news.
|
|
Stage 2 2003
Stage 1 2007
BRCA 1+
|
 |
sparrow
Groupie
Joined: Feb 09 2008
Location: United States
Status: Offline
Points: 47
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 18 2008 at 2:19pm |
Hey Pam,
I wouldn't want to bet on your oncologist now having more interest in Vitamin D!  On my first visit to the oncologist a few months ago, I asked about Vitamin D testing. Keep in mind this oncologist is in a major university setting and also an assistant professor. I was told that because there is no DIRECT LINK to breast cancer, Vitamin D testing would not be done. Also, that insurance would most likely not pay for the test. At the end of the visit, I firmly stated: "I WANT the Vitamin D test." The test was done. I knew it was necessary for me, for my peace of mind!
When I saw my internist for a yearly physical, he was most eager to do a Vitamin D test. He loves tests!!!  He will check my level at least twice a year. So now I'm happy!
I trust and have great respect for my doctors, but there are two of us in this doctor/patient relationship. We just need to remind them periodically!
|
|
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
|
 |
CarynRose
Senior Member
Joined: Aug 04 2007
Location: Robbinsville, NJ, USA
Status: Offline
Points: 960
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 19 2008 at 2:49am |
|
It was my endocrinologist who gave me the test. And, even though I was within the normal range (36), he felt that with hx of cancer, I should have a higher level. He prescribed a weekly supplement for me and the goal is to get me to at least 50 (my goal is low 70's). The cruise we're taking in August should give me a chance to absorb more of that Vit. D. How 'convenient'. LOL
|
|
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
|
 |
trip2
Senior Member
Joined: Jun 03 2007
Location: Under Palm Tree
Status: Offline
Points: 8549
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 19 2008 at 4:03am |
Oh CarynRose a cruise!
Girl you so deserve something wondeful like that. You should get lots of vitamin D sitting out by the pool. I'm so happy for you,
|
|
Stage 2 2003
Stage 1 2007
BRCA 1+
|
 |
sparrow
Groupie
Joined: Feb 09 2008
Location: United States
Status: Offline
Points: 47
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 19 2008 at 4:20am |
CarynRose,
Hey! I think you've hit on the perfect prescription for low Vitamin D....a cruise!!!  Why didn't I think of that! I hope you have a wonderful time!
I think you'll find this interesting.....My husband is diabetic and recently had a check-up with his encocrinologist. At the end of his appointment, I asked the doc about his views on Vitamin D. He had just attended a conference and said that a great deal of focus was given to Vitamin D. He predicts in the next 10 years, Vitamin D will be like cholesterol has been over these past 10 years. He is now checking levels on all his patients and has found only 1 in 30 of his diabetic patients to be within normal limits! He went on to say that his own level was about 24, and his goal was to raise it to 50.
I was diagnosed early Jan. of this year. About 3 months prior to diagnosis, I had quit taking my Citracal (calcium plus Vitamin D 630mg/400iu, 2 caps three times a day with meals, and a multi vitamin with 800 iu vitamin D.) After diagnosis I got right back on these supplements, and at the end of May, my first Vitamin D test was 33. I have made a point to get some sunshine every day (not hard living in Alabama!) and my Vitamin D level now, done by the internist mid July, is 58! Yeah!
|
|
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
|
 |
CarynRose
Senior Member
Joined: Aug 04 2007
Location: Robbinsville, NJ, USA
Status: Offline
Points: 960
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 21 2008 at 4:13am |
Your husband's endocrinologist and mine must have attended the same conference. I'm glad to see conventional medicine coming forward.
Caryn
PS -- I went to a pool party yesterday and purposely spent time in the pool in the sun with no sunscreen. Not for very long -- I didn't even get color -- but ooooh did it feel good.
|
|
Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+
7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08
Lepto mets 10/08
Rads for 4 brain tumors 4/10.
Leptomets return 6/10
|
 |
sparrow
Groupie
Joined: Feb 09 2008
Location: United States
Status: Offline
Points: 47
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 21 2008 at 2:48pm |
Caryn,
I bet our endocrinologists did go to the same conference! So glad some speaker got them interested in Vit. D. Wish these oncologists would get on the band wagon now. Maybe others on the forum will tell us what their oncologists and other doctors are saying when asked about Vit. D. I don't see how they can keep ignoring the subject when it is all over the news and in the journals.
I sat 15 minutes in the sun today, out in my herb garden. The temp here is 101!  I did have a glass of iced tea to get me through....but a dip in a pool sure would have been nice!
Will be anxious to hear how your next Vit. D test comes out!
|
|
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
|
 |
Nancy
Senior Member
Joined: Jul 23 2007
Location: Altoona, PA
Status: Offline
Points: 3814
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 29 2008 at 6:56am |
hey sparrow,
Ronda had asked me to check in with my D levels once they were back, even though it is Lori who was dx with bc.
I am happy to report that my levels are 57!!!
I could not believe it. My gyn just called a while ago. However my bone density scan while good on the spine, is still weak on the left hip. I am on the generic of Fosamax, and have been for years, and I drink milk and eat cheese daily.
I am going to do as Ronda said she was going to do on the vitamin D...to increase it in the Winter months by 1000 extra per month, every month. I have been sitiing in the sun every day (that we have sun), and taking 1000 iu's per day. Hubby has been taking it also, and his psoriasis is the clearest it has been in 30 years!! All this from D!
Lori was having her levels done, and I am anxious to see what hers are, considering that she is out in the sun every day running, etc., and she has been taking cod liver oil and D3 for quite a while now.
Thanks Ronda!!! Love Ya!!
Hugs,
Nancy
|
 |
sparrow
Groupie
Joined: Feb 09 2008
Location: United States
Status: Offline
Points: 47
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 30 2008 at 2:36pm |
Nancy,
Way to Go, Nancy!  Having a Vit. D level of 57 is great news! I read recently a level of 60 is what most life gaurds would be at the end of summer. (I would imagine that would be without supplements and sun only.) Now if we can just keep these levels up during the winter months!
Has anyone read or been told how often Vit. D levels should be checked? I'm going to try and ask my husband's endocrinologist what he would advise....but won't see him until Nov.
Nancy, do let us know Lori's level. It will most likely be just fine, as much as you say she spends outside with her exercise program.
|
|
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
|
 |
Nancy
Senior Member
Joined: Jul 23 2007
Location: Altoona, PA
Status: Offline
Points: 3814
|
Post Options
Thanks(0)
Quote Reply
Posted: Jul 30 2008 at 3:12pm |
|
|
 |
sparrow
Groupie
Joined: Feb 09 2008
Location: United States
Status: Offline
Points: 47
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 01 2008 at 2:45pm |
Nancy, thanks so much for the link at the bottom of your last post. I printed it off and just finished reading it...lots of good information. We all need to be asking our doctors to check our Vitamin D levels! I hope others will take the time to read the article.
Sooooo Nancy.....You're literally "SEEING RED?" Maybe you're just all stirred up over the Vitamin D issue!!!! hehehe Well, that's my best guess.....sorry, no computer help here.
|
|
60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
|
 |
Nancy
Senior Member
Joined: Jul 23 2007
Location: Altoona, PA
Status: Offline
Points: 3814
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 12 2008 at 1:08pm |
Ladies,
Lori called earlier today. They are in Maui, and she called her med onc for the results of her D levels.
I am happy to report that her levels are 73!!
However, get this....the nurse said that the onc wanted her to STOP taking the D3!!!!!!!!! They said that the normal levels are supposed to be between 23-70. we know that is not the case. Ronda said they are supposed to be between 70-90.
As Lori said, apparently he is not up on the D levels and where they are supposed to be. She was sending him the article from the Vitamin D Council.!!!!!!!!!
As I have told you before, she is taking cod liver oil and D3, which together is about 4500-5000 iu's per day. She said there was no way she was going to stop taking it, after all the articles she has read lately. !! Guess she will educate him!!!
Maybe we should send him all the postings from here on this site also? 
Hugs,
Nancy
Edited by Nancy - Aug 12 2008 at 1:09pm
|
 |
BrendaF
Senior Member
Joined: Dec 07 2007
Location: United States
Status: Offline
Points: 401
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 12 2008 at 4:43pm |
|
My onc never brought up testing for vit d, but I asked that it be added when I had bloodwork a couple of weeks ago. It was low at 23. Then, when she prescribed the supplement, I was specific to ask for d3, from what I've read. She said she didn't think it mattered, but I understand that d3 is best. I'm on 50000 units per week for 8 weeks.
|
|
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
|
 |
Nancy
Senior Member
Joined: Jul 23 2007
Location: Altoona, PA
Status: Offline
Points: 3814
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 12 2008 at 5:40pm |
Brenda,
From what Ronda has said and from what the Vitamin Council on D has reported, the D3 is the one to take. It is the cholecalciferol.
The one that you are on from your doctor is not as good. If you look at the article in the post I made, at the top of the page....in red., it has the information. Can you imagine Lori's onc telling her to stop taking it? I don't think so  23 is low, very low.
D3 aids the immune system and promotes strong bones. I was very glad to see that Lori's levels are good. Once you are off of this prescribed dosage, after 8 weeks, do they plan on doing your levels again? If I were you I would ask for it. Then see if that 50,000 has brought it up any. If Not then perhaps you can convince your doc to read the new info on D. As Ronda has said, most docs are not up-to-date on this. D3 is the one. I bought mine at Walmart, and it is a twin pack of 100 tablets each bottle, 1000 iu's per tablet. They are $6.48. Spring Valley is the name on the bottle.
Good luck with presenting your doctor with an up-to-date on D. 
Hugs,
Nancy
|
 |
BrendaF
Senior Member
Joined: Dec 07 2007
Location: United States
Status: Offline
Points: 401
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 13 2008 at 10:29am |
|
I did get the script for D3. I take one pill 50,000 IU's once a week for eight weeks, then I will take a lower dose daily. I might go ahead and also take 1000 units a day in the meantime. Yes, 23 is very low, especially for late July!!!!! Can't imagine what it might have been back in january!
|
|
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
|
 |
BrendaF
Senior Member
Joined: Dec 07 2007
Location: United States
Status: Offline
Points: 401
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 13 2008 at 10:35am |
|
Ah - I had skimmed over the article earlier, but I see where it says that D3 is not available by prescription. Wrong, or outdated! I definitely have D3, and it is by prescription.
|
|
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
|
 |
Nancy
Senior Member
Joined: Jul 23 2007
Location: Altoona, PA
Status: Offline
Points: 3814
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 13 2008 at 12:05pm |
Brenda,
Read page 6 of that article. Lori had researched this and also, this article is very recent. It says...
"However, ergocalciferol is not human vitamin D, it may be a weaker agonist, it is not normally present in humans and its consumption results in metabolic by-products not normally found in humans. It is also two-to-four times less effective than colecalceferol in raising 25(OH)D levels."
Just repeating what Ronda had said many weeks ago. Does your script say colecalceferol? Also, may I ask what the cost for this is?
I posted some more links on another topic started by Skippy123.
I just think it is so interesting that when I was a kid, we never heard of Autism, and it seems as though we were so much healthier. No sunscreen, and we took cod liver oil alot. My Mom was a RN, and she was always telling us that we had to get sun. Guess they knew better then than they do now.
Hugs,
Nancy
|
 |
BrendaF
Senior Member
Joined: Dec 07 2007
Location: United States
Status: Offline
Points: 401
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 13 2008 at 1:55pm |
Yes, colecalceferol. Insurance would only give a month's worth, so I got four pills, and my copay was ten dollars.
I had just bought a bottle of 1000 IU caps, and I think I will take one a day as well.
Reading more in the article, I saw that theophylline can lower D3. I have been taking that for my lung / diaphragm issues since june, so maybe that could be part of why I'm so low.
|
|
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
|
 |
krisa
Senior Member
Joined: May 21 2008
Location: Portland, OR
Status: Offline
Points: 1090
|
Post Options
Thanks(0)
Quote Reply
Posted: Aug 13 2008 at 1:59pm |
.
Edited by krisa - Oct 09 2008 at 7:42am
|
 |