vitamin D

ohilly
ohilly Member Posts: 441
edited March 2014 in Breast Cancer #1
I have been hearing more about studies showing that recurrence can be related to low levels of vitamin D in breast cancer patients. I am currently taking 800 IUs of Caltrate/vitamin D, but I am wondering if I should be taking more? I should add that I am in a clinical trial where I am taking Zometa, a drug which is currently used for osteoporosis but believed to prevent recurrence, and am also on Femara. What are other people doing about vitamin D? Have you had your levels checked? How much do you take?

I did ask my oncologist about this already, and he said the evidence about vitamin D is inconclusive and that there wasn't a need to test my levels since I am taking the Caltrate. But I have seen other articles that talk about taking as much as 1,000 IUs per day, so I am beginning to wonder if it can't hurt to take more vitamin D even if the benefits are not yet clear?

Your views would be appreciated,

Ohilly

Comments

  • lynn1950
    lynn1950 Member Posts: 2,570
    #2
    Vitamin D
    My oncologist pooh-poohed the Vitamin info as well. He said if I was taking Caltrate (I do) I am fine. It's hard to know when to push for stuff. How hard can it be to test for Vitamin D deficiency? Lynn
  • Irishwhispers
    Irishwhispers Member Posts: 96
    #3
    Vitamin D & Calcium
    As with everything else there are some Drs that think vitamins / supplements are or arent neccessary ... mine has me on 1000 mgs of Vitamin D along with 600 mgs Calcium...

    I used to take Glucosimine I did notice a difference in joint pain way before being Dxd.

    My next call to the onco will be asking if I should resume taking it. Since I started Arimidex 3 weeks ago, I am noticing that my bones sound like the Creaky Bones Symphany if I sit for too long. So I try to keep moving.

    Im not sure if this helps Ohilly..
    I am just keeping close watch on things...

    Hugs

    Trish
  • Derbygirl
    Derbygirl Member Posts: 198
    #4
    I take Calcium 600mg w/ Vit
    I take Calcium 600mg w/ Vit D (helps with absorption) twice a day and this was recommended many years before b.c. diagnosis. Oncologist agreed with dosing and kept me on this throughout b.c. treatment. I believe the Calcium/Vit D label states that Vit D is 100% of the daily allowance. I've been told that taking too much can cause other problems. I am also on Femara and getting ready to start Glucosamine/Chondroitin as a preventative as ordered by my Oncologist. Hope this helps.
  • creampuff91344
    creampuff91344 Member Posts: 988
    #5
    Derbygirl said:

    I take Calcium 600mg w/ Vit
    I take Calcium 600mg w/ Vit D (helps with absorption) twice a day and this was recommended many years before b.c. diagnosis. Oncologist agreed with dosing and kept me on this throughout b.c. treatment. I believe the Calcium/Vit D label states that Vit D is 100% of the daily allowance. I've been told that taking too much can cause other problems. I am also on Femara and getting ready to start Glucosamine/Chondroitin as a preventative as ordered by my Oncologist. Hope this helps.

    My oncologist is a firm
    My oncologist is a firm believer in Vitamin D, and has switched me from Vitamin D to Vitamin D3. He also increased the dosage to 2000 UIL as my blood testing showed that 1000 UIL wasn't enough to keep my level up. Also taking Calcium + D. Maybe this is an overkill, who knows, but I trust the onc to know what is best. You might ask your doctor to screen for Vitamin D levels the next time you have blood work done.

    Judy
  • mmontero38
    mmontero38 Member Posts: 1,510
    #6
    Ohilly, if your oncologist
    Ohilly, if your oncologist is reluctant to test your Vit D levels then your primary care physician can do that. My endocrinologist tested mine and found it to be extremely low so he put me on 50,000 iu weekly. All my doctors have agreed that Vit D is vital so ask your primary to tests you if your oncologist won't. Hugs, Lili
  • mgm42
    mgm42 Member Posts: 491 Member
    #7
    Vitamin D
    I seem to recall that C.Abbott wrote extensively about Vitamin D. Perhaps you can find the thread on this site and find her response to a posting about it. Or, email her direct and ask her. I don't want to put words her mouth so it's best to go straight to source. I believe she has done quite a bit of research on the topic. Hope this is of some help. Hugs, Marilynn
  • phoenixrising
    phoenixrising Member Posts: 1,508
    #8
    Vitamin D
    I've been taking calcium/mag, multi vitamin with D since the mid 90's and I still got osteo, go figure. So now I take ~1500mg Cal, 500mg Mag and 2000IU Vit D/day. I had my Vit D checked as I was going on an Aromatase Inhibitor and had heard from many women and Cabott did write an extensive, informative post on it that it helped with bone/joint pain. Although I had been taking 2000IU for quite a few months my test results indicated I was on the low side of normal.

    My docs didn't seem to have an opinion one way or another but will humour me if I ask for tests that aren't totally unreasonable or expensive.

    I'm not sure where you live but I'm sure you know an excellent source is sunlight.
    If you live below a certain latitude you might be fine, but I'm at 54 degrees latitude and although it's pretty dark throughout the winter we only have a few hours of dark in the summer. I'm sure 1000IU is safe for you as one onc suggested 2000IU for me without even testing to see if my levels were normal. As a matter of fact I've seen 800IU-1000IU recommended many times and there have been complaints that the RDI isn't high enough.
    Good luck to you Ohilly
    jan
  • ohilly
    ohilly Member Posts: 441
    #9
    phoenixrising said:

    Vitamin D
    I've been taking calcium/mag, multi vitamin with D since the mid 90's and I still got osteo, go figure. So now I take ~1500mg Cal, 500mg Mag and 2000IU Vit D/day. I had my Vit D checked as I was going on an Aromatase Inhibitor and had heard from many women and Cabott did write an extensive, informative post on it that it helped with bone/joint pain. Although I had been taking 2000IU for quite a few months my test results indicated I was on the low side of normal.

    My docs didn't seem to have an opinion one way or another but will humour me if I ask for tests that aren't totally unreasonable or expensive.

    I'm not sure where you live but I'm sure you know an excellent source is sunlight.
    If you live below a certain latitude you might be fine, but I'm at 54 degrees latitude and although it's pretty dark throughout the winter we only have a few hours of dark in the summer. I'm sure 1000IU is safe for you as one onc suggested 2000IU for me without even testing to see if my levels were normal. As a matter of fact I've seen 800IU-1000IU recommended many times and there have been complaints that the RDI isn't high enough.
    Good luck to you Ohilly
    jan

    vitamin D levels
    Thanks to all of you for responding to my question about vitamin D levels. My oncologist agreed to test the levels at my next appointment, which is not until April. However, I realized I am actually already taking 1200 IUs per day between taking prenatal vitamins for my hair to grow back and Caltrate. So hopefully I'm okay, but I'm glad I convinced my doctor to do this.

    Another question: my doctor is one of the top oncologists in the city of Chicago at the University of Chicago Medical Center. Why do I get the feeling (and this is about any doctor, not just him) that WE are the ones who have to be on top of our medical care. Not only is it me pushing to get my vitamin D levels checked (why didn't he suggest this himself) but I found MYSELF a clinical trial about Zometa which I am now enrolled in. When I suggested the clinical trial to my doctor, he was all for it, but again I'm wondering why he didn't come up with this himself. What are others' experiences about doctors and having to take charge yourself?

    Thanks, Ohilly
  • Marcia527
    Marcia527 Member Posts: 2,729
    #10
    ohilly said:

    vitamin D levels
    Thanks to all of you for responding to my question about vitamin D levels. My oncologist agreed to test the levels at my next appointment, which is not until April. However, I realized I am actually already taking 1200 IUs per day between taking prenatal vitamins for my hair to grow back and Caltrate. So hopefully I'm okay, but I'm glad I convinced my doctor to do this.

    Another question: my doctor is one of the top oncologists in the city of Chicago at the University of Chicago Medical Center. Why do I get the feeling (and this is about any doctor, not just him) that WE are the ones who have to be on top of our medical care. Not only is it me pushing to get my vitamin D levels checked (why didn't he suggest this himself) but I found MYSELF a clinical trial about Zometa which I am now enrolled in. When I suggested the clinical trial to my doctor, he was all for it, but again I'm wondering why he didn't come up with this himself. What are others' experiences about doctors and having to take charge yourself?

    Thanks, Ohilly

    same
    I've had the same experience. I had to ask the same question to my surgeon and oncologist to figure out what was going on. I do believe they were good, just their way, I guess. The surgeon didn't like to be questioned. I'd ask about treatment others had received and finally he told me, "I'm trying to save your life! You are different." I decided to just trust him because I felt he knew what he was doing. Sometimes you just have to give up control. Other times you have to take control.

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