Tamoxifen and Osteoporosis

Jo_Ann_K

Greetings!

I am hoping that someone can offer some guidance.  I am 56 years old, have been on Tamoxifen since 1/2009.  I have had multiple side effects, but a new one cropped up a few months ago - spinal osteoporosis (holes in bones) found on a routine dexascan.  I don't fit the normal profile of someone with osteoporosis so the docs think it is probably secondary to the Tamoxifen treatment - the sudden suck of estrogen out of of my body.

So my internal medicine doc and oncologist talked about how to treat, and they both felt it should be treated with one of the meds on the market.  I started Atelvia 2 months ago, and after last week's treatment, I started having chronic nausea and muscle cramps.  The internist told me to get off of the medicine immediately. I am likely unable to take any of the meds aimed at this issue because of the side effects.

So here I am...with a holy spine, and still another nearly 2.5 years on Tamoxifen. If anyone else has or is going through this, any ideas you can offer will be greatly appreciated.

Thanks!

Jo Ann from Maryland

ICanDoThis

I think I don't understand why your docs are telling you this.

If you were post-menopausal at diagnosis (yep, I didn't go through menopause until after 56), Tamoxifen doesn't hurt your bones. In fact, a frequently-prescribed bone density drug - Evista is a SERM like Tamoxifen. When I went on Tamoxifen, my gynecologist and endocrinologist both recommended that I go off Fosimax, as the two meds do the same thing. I experienced a gain in bone density after going on tamoxifen.

Now, the aromatase inhibitors DO suck estrogen out of your body - they are Femara, arimidex, and aromasin - and they do cause bone conditions.

Osteoporosis is not normal in our 50s - well, it's never good, but I know I wasn't a slightly built caucasian woman in my 70s or 80s when I was diagnosed! Something else is going on, and likely has been going on for a while - unless you have earlier dexa scans showing that you were osteopenic - that is, that your bone density was gradually going down?

If I were you, I would find myself a good endocrinologist who specializes in bones and osteoporosis. At menopause,  the normal drop of estrogen in your system can cause a sudden loss of bone density. This is pretty normal and tends to level out over the next few years.

Another cause of osteoporosis is a vitamin D deficiency. Mine was so low that my endocrine system was overproducing parathyroid hormone and pulling calcium out of my bones. I am back to normal D3 levels again (for BC survivors, this should be HIGHER than the 25-30 your internist may recommend) - my endocrinologist is very happy with my 45-50. Another cause can be a benign parathyroid tumor, which throws the same system out of whack.

Hope this helps

Jo_Ann_K

Sue,



Thanks for the great info. I was pre-menopause when I was diagnosed at 53. I will definitely bring that up to the docs. I wish I had a dexascan earlier, but so much was going on. I was taking Vit D and Calcium daily before starting the Atelivista.

ICanDoThis

When I say I take vitamin D3, we jumpstarted me with 50,000 ius weekly for the first month, then biweekly, now monthly, plus 1-2,000 a day. With magnesium, Vitamin K-2, and a good multi-vitamin. And I go out for a 10-15 mins of sun at lunch-time. These conditions correct slowly.

Can I suggest the Bones, bones, bones forum further down the page?

I sometimes think most of us here could probably pass oncology boards; I really never thought that my bones would cause me problems!

Jo_Ann_K

Does the Vit D fill in the holes or just stop it from advancing further?

cycle-path

Vit D will help rebuild bone.

Jo Ann, have you had tests to figure out what's causing the loss of bone? There should be a blood calcium test, a serum Vit D test, and a urine test. It's critical to find out where the bone calcium is going. It's not just being carried away to another dimension -- it's leaving your body via blood or urine. If it's going out in your blood, that means one thing and urine means another.

I believe, though I can't recall, that a thyroid test should also be ordered because certain thyroid problems can cause bone loss. 

ICanDoThis

From Wikipedia:

Bone remodeling (or bone metabolism) is a lifelong process where mature bone tissue is removed from the skeleton (a process called bone resorption) and new bone tissue is formed (a process called ossification or new bone formation). These processes also control the reshaping or replacement of bone following injuries like fractures but also micro-damage, which occurs during normal activity. Remodeling responds also to functional demands of the mechanical loading.

In the first year of life, almost 100% of the skeleton is replaced. In adults, remodeling proceeds at about 10% per year.

An imbalance in the regulation of bone remodeling's two sub-processes, bone resorption and bone formation, results in many metabolic bone diseases, such as osteoporosis.

Me again:

You have to have the proper levels in your blood of the vitamins and minerals that are needed for bone formation - they are, primarily, calcium, magnesium, Vitamin K2, Vitamin D, boron, and a whole bunch of good micronutrients. So I do take a GOOD multi-vitamin. Research Consumer Reports to see the latest quality reports on vitamins - let's just say that advertising is not an indicator of a high-quality product.

Again, this is a slow process, but it is nice to see the next DEXA, with -wow- no areas of osteoporosis in spine - -2.4, but that's osteopenic!  

There is an association - no one has seen cause-and-effect - but correlation - between breast cancer, osteoporosis, and low vitamin D. My theory is that somehow, there is something metabolic underlying all this, and fixing Vitamin levels is a good place to start. And it can't hurt.

I should also add that getting Vitamin D levels up is great for depression. For me, I felt the effect in DAYS.

Hope this helps - again - I would suggest the Forum on Bone Health

Elem

how did that turn out for you ? Did you find a pill or cure for holy spinal isuues? Did you successfully finish tamoxifen?

Thank