queries- vitamin d, calcium, cypd, and more

Afraid

i have a few treatment related queries for you early stagers :

1. Vitamin D 

vitamin d deficiencies can cause breast cancer possibly right? Do you women take a supplement of vitamin d? Do you get injections. i was told both of these are possible. If you take a supplement, Did your doctor say what dosage (1000 or 2000 iu)? Do your doctor recommend a good brand? Which are we meant to take vitamin d2 or d3 or something else? i am very deficient (at 18)

2. Calcium

can a vitamin for calcium be safely taken with tamoxifen? how much dosage? what is good brand? i used to take caltrate but not sure if i should take that still

3. Other Supplements

i was told no other supplements with tamoxifen. is this what you have been told? does your doctor recommend anything else to fight cancer like asprin? does asprin interfere with tamoxifen?

4. CYP2D6 test

my doctor does not give scripts for this test and would not give me one because she does not believe in the efficacy of this test. please i would like to take it and would like to know how i can. can i get it myself or do i need a script? can i just pay to take it? can i get my pcp to order for me? i need peace of mind

5. more drugs like metformin and zometa

my doctor also does not believe in these other drugs and i keep reading about many women on these boards who get these drugs. can you tell me how i can get access to this drug or how i can convince my oncologist. zometa has been shown to be great no? i am apparently not high risk enough according to my doctor. this upsets me because in my opinion im high risk enough and should be able to get something that might cut my recurrence risk, no? how do you women who get these drugs get your doctor to give you infusion. are there centers that give these infusions?

Jomama2

Can't answer most of your questions...really just bumping. But, I don't think the scientific community would say low vitamin D causes cancer, but there seems to be a correlation regarding low levels at time of diagnosis. Just another factor in the mix. You do not want D2 (the kind commonly prescribed), you want D3, which you can get online from a site like Vitacost, or a health food store or pharmacy. My level at time of diagnosis was also 18...over the past year I have finally gotten it up to 60.

I take 2,000 mg of metformin (Glucophage) daily, but I have type II diabetes.  Hope someone else can answer your other questions.

Moderators

Dear afraid, 

While you wait for more members to respond, you may want to check out the main breastcancer.org site on the Importance of Vitamin D. 

We hope this helps!

The Mods

1Athena1

Hello, afraid,

Each of us may have different things that work. here are my answers:

1) Vit D - Make sure it is D3 specifically. Dosage recommendations are generally guesses. There is no established good dose, especially for BC patients. Studies vary somewhat on the optimal levels, but the good news is there is no evidence of a harmful dose. Unfortunately, because Vitamins are not regulated in the way rx drugs are it is hard to know who makes the best brand. Go to the web site of US Pharmacopeial Convention (http://www.usp.org/usp-verification-services/usp-verified-dietary-supplements)- the body that certifies the purity of rx drugs. SOME vitamin makers voluntarily submit their products for certification. Those labels that do may be the ones to watch.

On dosage, I go by blood levels, not dosage. I started at 2000 IU/day, then went up for a long time, then down, as blood tests dictated. Get your onc to test your D3 whenever you have checkups. It is an expensive test, so insist on it. I stay at a level of between 50-100. I find that too much Vit D3 can make me tired - I know of no one else with that problem. Be sure to stay with the same brand if you find a good one so that you can assume your blood levels will remain the same. Levels can take several months to reach optimal concentrations. It took me about 7-8 months. I take Vit. D orally.

2) Calcium: It depends on age. I only recently started taking 500 mg/day. I am pre-menopausal and I don't even know if that dosage is making a difference. Be sure to take both calcium and Vit D3 with a multivitamin.

3) CYP2D6: Despite some initial hoopla about this enzyme's possible ability to determine good Tamoxifen candidates, there is no evidence confirming that so the brouhaha has died down somewhat. I would not worry about it. It tests your ability to metabolize Tamoxifen but that does not mean it says how you will respond therapeutically. Tamoxifen itself isn't what acts on you but its metabolite, hence the interest in this area. I have taken other medications that are metaboilized by this enzyme - or whose metabolites are- with varying herapeutic results so I think in my case, at last, this standard may not apply.

4) Other supplements: For me, always a multivitamin. I sometimes take magnesium and CoQ-10 for general health. I am also taking Tumeric for bones.

Zometa: I was put on it (1 mg every six months) then taken off it after studies found less benefit for pre-menopausal women. I would like to be on it but my onc said no. I did feel stronger. If you are post-menopausal your onc may decide otherwise. For us early stagers it is given in smaller amounts and less frequently than for stage IV patients, so for us it has a fairly benign side effect profile. (Your Body May Vary, of course!)

Metformin is a diabetis drug and might only make sense experimentally for you if you were stage IV.

For more information on supplements, visit the NIH's National Center for Complementary and Alternative Medicine (http://nccam.nih.gov/), which has a glossary of supplements and information on what the science says (not much, in many cases).

The Susan G. Komen web site has a good primer on the evidence base for some supplements (http://ww5.komen.org/BreastCancer/ComplementaryTherapies.html).

Finally, the Vitamin D3 council is an excellent resource on Vitamin D3. (http://www.vitamindcouncil.org/) Doctors, in my experience, know little about supplements.

For complementary medicine in general I also like Ralph Moss's web site. He is a scientific researcher who believes in evidence-based medicine but has strongly question conventional cancer treatments. The value of his blogs for me is that I learn interesting things about supplements. He is neither a quack nor a soothsayer - he is one of those rare people who stand in between both (and some may strongly disagree with me on this). I would not buy the many written products he sells, but I used to enjoy his newsletter, which is now a blog. http://cancerdecisions.com/ It is another point of view in a medical specialty IMO lacking in ideological diversity.

Hope this helps, and good luck!

BilateralBeauties

My Onc wants me on VitD and Calcium. I take 6,000 ius VitD3 and up to 1,800mg calcium daily. I do have some bone lose at 45. If no known bone loss, 600 or 1200mg calcium would be a better start. My VitD was nine and I now maintain approximately 40. I actually am doing better on over the counter at 6,000ius than I was on prescription of 50,000ius weekly.

My onc is also opposed to Zometa for all of it's other bad side effects (jaw bone death being one). It's very difficult to have dental work done after Zometa, so they are cautious about not causing us more problems when benefit is really in the gray area. I tried to get on the Metformin trial, this is still in trial, but they didn't have a bilateral category and my cancer was also not considered agressive enough. My recommendation is to focus on daily food consumption, normal glucose levels and take your hormonals like Tamoxifen when you get that far. Good Luck

SelenaWolf

Vitamin D-Various studies have indicated a correlation between low Vitamin D levels at the time of breast cancer diagnosis.  There is no conclusive scientific evidence that increasing your Vitamin D intake will lower your risk of recurrence.  Most oncologists will advise you to only take the recommended daily dosage for your age, unless you are severely Vitamin D deficient, which causes its own set of problems.  Too high a dose of Vitamin D - when you don't need it - can result in other health problems such as kidney/kidney stone issues.

Calcium-Will not interfere with tamoxifen.  I have been taking 1,000mg daily for about 8 years now - on the advice of my PCP - because of a slightly lower bone density reading.  My oncologist knows about this supplementation and did not indicate that it was problematic with tamoxifen.

Other Supplements-I've been taking a women's formula multivitamin for years, in addition to the extra calcium.  Again, my oncologist had no objection to continuing this.

Low Dose Aspirin-There is no clinical evidence that low dose aspirin has any effect on reducing breast cancer risk.  It's, basically, just theoretical: if breast cancer has an inflammatory aspect and low-dose aspirin is an anti-inflammatory, then it's possible it may have an effect.  So far, studies into this issue with regards to breast cancer are inconclusive.  Moreover, low dose aspirin can cause severe gastrointestinal issues, some of them deadly.

Tamoxifen-Certain antihistamines and various SERMS will interfere with the efficacy of tamoxifen.  Your oncologist and your pharmacist will be able to guide you in this respect.

CYP2D6-Your oncologist and 1Athena1 are right; this test is unreliable in determining how well you may be metabolizing tamoxifen.

Metformin-Metformin is a diabetes drug.  Over the years, it has been observed that it may improve survival outcomes for metastatic breast cancer patients, but this has been observational only and no conclusive clinical evidence is available, as yet. 

The Metformin Clinical Trial is, currently, being conducted in several countries to determine  if this drug can reduce recurrence risk in early-stage disease.  So, unless you can get yourself enrolled in the trial (and you will be randomized to either receive Metformin or to receive the placebo; you will not know which tablet you'll be getting), it may not be advisable to take the Metformin, especially if you have kidney issues.  Right now, no one knows if Metformin will help reduce risk, have no effect on risk or - conversely - increase risk and, until these issues are addressed, your oncologist may not be willing to expose you to the drug.

Zometa-While this, may, be a good option for advanced/metastatic disease, this drug has some severe- and irreversible side effects.  In my opinion, if your oncologist doesn't think that the benefits will outweigh the risks in your situation, he- or she may have very good reasons.

edwards750

Afraid I take Tamoxifen and 1200 mg of calcium and Vit D3 as well because I have osteoporsis so its okay to take those. Dont know about the others. I would double check with my ONC. diane