How to deal with Osteopenia...

lam

Hi Everyone,

I had my 3 month check up today, blood work all looked good so that is always comforting to hear. I had also recently had a bone scan and my onc. said that I have visible signs of Osteopenia in my hips and spine. I had never heard of this. Know about Osteoporosis but not Osteopenia. Once again I'm back on the treadmill of trying to understand a new health issue and would love to know if any of you have recieved a similar report on a bone scan and what advice you were given re diet, supplements etc. I've taken calcium supplements for years so was pretty stunned to hear this news. Since chemo I've had to be on thyroid meds and my onc. did say that these meds along with chemo itself can cause this condition. Obviously I want to do what I need to to avoid falling into full blown osteoporosis. I am also sitting here this evening having a mixed bag of emotions about this whole BC journey. I just want the bad news stuff to go away. I know that this news is not as serious as some here are dealing with so I don't mean to whine... This journey just keeps taking little twists & turns and I want to get off the ride! Also, while sitting in the waiting room I paged through a cancer magazine and read some comments by BC patients. One paragraph dealt with being cured. The patient was told by her doctor that there is no cure for BC, that it's only when you die from something else do we consider you cured from BC. For some reason this really upset me, I don't know how much truth there is in this statement but I found it to be a cruel reply to the patient. Sorry if I'm rambling but as usual the BC website is the one place I can come to and just lay it all out there...

Hugs,

JCSH10

Hi Les-Ann,
i know how you feel...you get one thing straightened out and then another something appears.
I was dx with Osteopenia in my wrist and spine last year ( I fell and badly sprained my hand while I was going thru expansion last year and was afraid I would PoP the expander and fell on my hand...haha expander didn't pop but what a bad sprain) Anyway, they also found my hip had osteoporosis which they said is a little unusual and put me on Actenol. I've been on that and calcium supplements since last October and won't know if my bone density is getting better until later this year when they repeat the dexascan.
The good news for me came today with a all-clear mammogram on my good left side. Now waiting for the blood work for all my other aches and pains.

It's just good to know others are out there feeling the same way you do and that is why a year and half out I still come here to check in.

Hope tomorrow is a better day for you.

Joyce

sflow

I was diagnosed with osteopenia a month before the bc dx so put that on a back burner. When I was done with surgery and rads, my doctor put me on arimidex. After reading how hard it is on the bones, I started Evista which is supposed to help. I would like to get another DEX scan to see if there is any difference, but I am not sure my insurance would cover yet another test.

JoanofArdmore

Dear Les-Ann,
I'm sorry to hear your newest bone density dx.Isnt it always something?
(And for what you're saying here:"This journey just keeps taking little twists & turns and I want to get off the ride! Also, while sitting in the waiting room I paged through a cancer magazine and read some comments by BC patients. One paragraph dealt with being cured. The patient was told by her doctor that there is no cure for BC, that it's only when you die from something else do we consider you cured from BC. For some reason this really upset me, I don't know how much truth there is in this statement but I found it to be a cruel reply to the patient. Sorry if I'm rambling but as usual the BC website is the one place I can come to and just lay it all out there..."
it's so true.And Marin has just started a great thread about this, called "Afraid to Trust the Good Stuff"Do check it out.I was there ranting plenty, apologized saying just that:"this is the place for this!"

Back to osteopenia, Are you on Arimidex or other AI?Because these cause bone loss.
I'm surprised your doc didnt give you some instructions on how to avoid sliding into osteoporosis.

Calcium isnt good, by itself.It should be good grade calcium,preferable citrate, which is best absorbed.It needs vitamin D with it, to be absorbed.And the D needs to be D3!And they are finding that vitamin D deficiency can cause bone loss as well as fatigue,and joimnt pain.They say taking 1.000 mg of D3 daily is great.More by doc's suggestion after having your blood D value tested.

And magnesium is also great for absorbing calcium.The formula is half as much magnesium as calcium.(Although I take 800 mg magnes to 1200 calcium)Gotta watch the magnesium, it can give you "the runs".Start small!I take one Citracal, and at night, a chewable tablet with 600 citrate, 300 magnesium, and 400 D3.
I also suppliment magnesium and D3.

ALSO, weight-bearing exercize is needed for bone density.Jogging, walking.I'm so large just walking is very weight-bearing for me, but you are slender, so have to be diligent!Pumping iron is very good as weight-bearing too, for the wrists.I cant do this any more--too darn hot&humid.Do it again in fall.

But I did raise my bone density from osteopenia back to normal range, without taking Fosamax, and I'm on Femara.So I know what I'm saying!

Having low BD doesnt make you sick.But no one wants to be laid up w/broken bones.I've a friend who fell, in her 40s.I'd read that a fall from standing that breaks bones shows a need for DEXA scan.She had one, and yes, osteopenia.
So don't fall!And good luck rebuilding bone!Any Qs, feel free to PM me.
Love, j

lam

Hi Joan,

You are one of the rocks on this website. Thanks for your post. My doc is not very forthcoming with info so I knew as I left his office it was this website I would run to for the info I need. I am going to print your post so that I can check it for all the details regarding the supplements you wrote about. Did you do anything specific with your diet? I am very encouraged to hear that you were able to raise your bone density back to the normal range without having to take Fosamax. I'm on Tamoxifen right now, will switch to an AI next summer so hopefully this is not working against me right now. I was checking out some info on osteopenia at the John Hopkins site and was struck by the fact that they said that women with osteopenia get bone fractures just as much as women with full blown osteoporosis!

Will also check out the new thread that you mentioned Marin had written about.

Thanks again Joan,
Love, L-A

lam

Hi Sandif,

Thanks for your input on this issue. I hope that you can get your insurance to cover a new scan as I think that it would be important for you to know how your bones are responding to the Evista.

Hugs,

lam

Hi Joyce,

Thanks for sharing your story on this issue. I hope that your next Dexascan has the same good news as your mammo did today. I'm really happy to hear you got an all clear on your mammo today - that's really the issue that counts for all of us! Hope that your blood work comes back with only positive news too. You and the other gals here have already cheered me up - like you I stay connected to these boards - thanks for the empathy.

Hugs,

LisaAlissa

Hi Les-Ann,

I recall reading a very well-written article in the June 2006 issue of More titled "The Brittle Truth About Your Bones--In the rush to prevent age-related bone loss, are doctors over-testing, over-treating and over-medicating us?" The story discusses (among other things, the term "osteopenia" and notes that it was not meant to be a clinical diagnosis, but rather a definition--and that what women with osteopenia have is a measurement--a number, but not necessarily a disease. It also discusses the risks associated with the treatments produced by the medicalization model.

I found it a very thought provoking article.

HTH,

LisaAlissa

lam

Thanks LisaAlissa, I appreciate the link. I find it much easier to deal with all of these health issues if I can get hold of as much info as possible. Will check this one out. Glad to hear that it is not defined as an actual disease!

Hugs,

Carol_D

I was diagnosed with osteopenia before my BC diagnosis about 3 years ago. My doctor wanted to put me on Actonel but I never actually took it. I think I feel that it's not a "disease" -- just as some others have said -- but rather a forewarning of possible problems in the future. I try to eat well and avoid falls if possible, lol. My doctor did tell me not to jump out of any airplanes. He doesn't have to worry about that.

Toronto

I was dx with osteopenia about 5 years ago. I take calcium, Vit D and magnesium supplements. My bone density improved after a year or so on just the Calcium and Vit D and has been holding steady since. I haven't been taking any medications for this, just the supplements.

I do try to walk a quite a bit, although the neuropathy has made that more difficult and I sometimes use weights if I'm watching a DVD or something.

sflow

Great link, LisaAlissa. I never considered the osteopenia a real serious thing either. I rely heavily on walking and some weight lifting, but sometimes I just think we are a product of our genes.

Jorf

Les-Ann

Assuming a few things from your post -

That this was your first DXA. In which case it just gives you a static number. The important part is if you are LOSING bone - not just where you are now. A low initial BMD may indicate that you just never developed a "normal" peak bone mass by 30.

That you were maybe thrown into menopause by your treatment or just recently did menopause or are still having periods but considered to be close to the end (b/c you're on tamoxifen and will switch leads me to believe that you're newly menopausal). We start losing bone density rapidly with the loss of estrogen. Tamoxifen can actually help in post-menopausal women.

Ask your provider to do a urine bone turnover marker test. That can let you know how quickly you may be losing bone mass. A DXA prior to 1 (tho the recommendation is actually 2) years won't tell you anything. The bone marker can help. If your provider doesn't know about this then go to someone who knows more about osteoporosis.

the stuff Joan talked about is A#1-right. Also avoid more than 1-2 cups of coffee, a high protein diet, proton-pump inhibitors (actually several medications). Weight bearing as well as strength and flexibility exercise is important. Be sure that your 25(OH) vitamin D gets tested and it's above 32 ng/ml.

Your thyroid medication is only troublesome if you're taking too much and your TSH is suppressed.

Just to add to what someone said above - a fracture due to a fall from a standing height is not only an indication for a DXA - it is diagnostic of osteoporosis - no matter what your bone density says.

The official recommendations (depending on whose recommendations you go by - National Osteoporosis Foundation or American Association of Clinical Endocrinologists - the rheumatologists, i think, have their own guidelines but I don't know them) for treatment are either T-score of -1.5 or below or -2.0 or below with significant fracture risk factors or any -2.0 or -2.5 or below. i think most of the people that are doing this for a living now are doing less rather than more drug treatment. Some of the primary care people still think that anything -1.0 or below need to be treated with drugs "preventatively" b/c the drug companies originally came out with a prevention dose when the drugs first came on the market.

The reason that more people with osteoponia fracture than with osteoporosis is simple - there are more people with osteopenia than with osteoporosis. (There was a big study called the "NORA" that showed this.) There's no magic number on a bone density that separates out fracture from non-fracture likely. There's a lot more involved.

Sorry to go on and on. I'm a little passionate about this subject - love it. One day I'm actually going to write the article that I've been saving up references for in a gigantic pile on my desk about osteoporosis and breast cancer directed at primary care providers. One day....

Jorf.

lam

Jorf

Thank you so much, as with Joan's post I'm going to have to print yours so that I can refer to it in more detail. I really appreciate your response. I'm finding that I really need to be informed on all the issues that come up for me - the doctors I see are all too busy to get into lengthy discussions on any of it. Hope you can put together your article sooner than later! Would love to see it when it is done, good luck.

I am a vegetarian, so hoping that my diet doesn't add too much protein, I do a bit of dairy (cheese,eggs). I was eating some salmon after chemo as my skin was so dry and cracked. Now I'm relying more on the Omega 3 supplements. I do have my coffee am & pm. Trying to replace the pm cup with green tea instead.

Thanks again for sharing so well with me on this topic.

Hugs,

BlindedByScience

Les-Ann, the fats in the salmon are not exactly the same fats as in the omega-3 supplements. Some people can take flaxseed oil and convert the omega-3 to what the body needs; others can't, but they can get the right form from salmon or other cold-water fatty fish (sardines, tuna, mackerel). If your omega-3 supplement is from fish, you don't have to worry about it--but salmon is also a source of Vitamin D. A serving of salmon has about 300-400 iu of D. It may be a very good food to keep in your diet.

If you added salmon to your diet because your skin was dry, were your cuticles also cracked & rough? If so, you really need the omega-3 fatty acids. These fats help out in other ways, too. They can help stabilize some forms of depression and mood swings as well as symptoms of Attention Deficit Disorder. Many who went through chemo are familiar with these symptoms which include the inability to focus.

When Jorf talks about avoiding a high-protein diet, remember that there are people who eat mostly meat, some potatoes, pasta or bread and basically shun vegetables and fruits. As a mostly-vegetarian, you should be getting a lot of fruits and vegetables and your protein would be from combining plant foods rather than the concentrated animal proteins. It's harder to have a high-protein diet without soy & meat.

lam

Hi BBS,

Can't believe how much detail I'm having to take in these days! Thanks for your input as well. My cuticles were very dry & rough. At one point my hands felt like they were full of paper cuts. I started taking biotin as well and not sure if it's coincidental but my skin is feeling better. The Omega-3 that I'm taking is from fish oil. It is described as an essential fatty acid blend. The other listed ingredients are DHA, EPA, GLA & CLA. I do eat soy and drink soy milk - not as much as pre BC dx but it's still a staple in my diet.

Thanks for sharing as well, I get so much from all of you.

Hugs,

lilahope777

Les-Ann - I'm in the same boat as you, just diagnosed with osteopenia and I'm having mixed feelings about taking the prescribed Fosomax.

I am 45, primarily vegetarian, small build, thrown into menopause by chemo, and was diagnosed with a T-score of -2.35 for my hip and -0.91 for my L1-L4 spine. I wonder why there's such a huge variance?

I read the side-effects of the Fosomax which scared me, especially the possible jaw necrosis. I'm trying to decide if I should take the Fosomax, go it alone with the Caltrate + D3 + weight-bearing exercise or both! I am torn.

I'll definitely ask for the urine bone turnover marker test. So glad you guys are here with lots of great information!

Janet

SoCalLisa

I had a DEXA scan as a baseline when I started arimidex..it was way above normal.I had one every six months and at the 18 month mark, it showed rapid loss of bone density to osteopenia..I had taken all the calcium, Vit D Mag and all the rest plus exercise to no avail so I did start the fosamax..it was the rate of decline that startled me so I felt it was the best choice for me..
The fosamax held it steady...

gracejon

I have read that the first 3 years of an AI has the greatest bone loss. It mentioned that the statistic correlates with the first 3 years of menopause doing the same thing. Genreally and certainly there are exceptions insurance companies "allow" DEXAs every 2 years with a diagnosis of osteoporosis/osteopenia. I did listen to a osteoporosis video on Medscape and took from that the official stand on using biphosponates are treat with porosis and not penia. With that remark it is clear the doctors practice with their own recommendations and we are getting treated with just the diagnosis of penia. My oncologist put me on Boniva early in treatment and I still lose significant bone density per DEXA but still remain penic. My PCP changed me to Fosamax but I have not started it yet. I do magnesium amd calcium, weight bearing exercise to stop the decrease. My next DEXA can not be done until 2008

SoCalLisa

Just a note jon..I was already past the three years in menopause when my bone density was way above normal..I had the bone loss only after I started the arimidex...

LizM

I had my first bone density test after 10 months on Arimidex. The results put me on the high side of osteopenia. My pcp put me on Fosomax plus D. I decided to take it because I had been walking/jogging for 2 miles a day for the last two years and had been taking 1,000 of D3 and 1500 mg of calcium daily. Not really much I could do in the way of lifestyle changes. I am fairly tall and very thin so I figured fosomax was my best bet right now to keep me from progressing to osteoporosis. I don't know if I had osteopenia before I started the Arimidex but I was premenopausal before diagnosis and just had an oophorectomy and went on Arimidex a year ago.

radiant

Thank-you Joan!

This is SO helpful. I will give it a try. Can you tell me how long this took to bring your levels back to normal - with the calcium, vitamin d3 and the magnesium?

Bless you,
Kim

SoCalLisa

My doctor gave me ergocaliferol (vit D) at
50,000 U once a week for 8 weeks to get my vitamin D up..now I take VitD3 to hopefully keep it up Of course I take all the Calcium , magnesium etc...

sherloc

as someone with full blown bone breaking advanced osteoporosis my advice is if your doc tells you you need fosomax or any of the other biophosphates take them.
And Jorf is an encyclopedia of knowledge.

Jorf

Janet, check your PMs.

But I thought I'd just add this to the group - since we need to advocate for ourselves!

Someone with a T-score in the hip much lower than a T-score in the spine needs a good workup from an osteoporosis specialist. It's either: a red-flag for a possible "secondary cause" of osteoporosis - that is, not menopause/age related. Menopausal/age related changes happen in the spine first (we fall apart from the inside out when it comes to bones). Some of these things are really easy to fix - like low vitamin D or a "renal calcium leak" - people who pee out all of their calcium. Some are more complex, like hyperparathyroidism if it isn't secondary to low vitamin D. I think someone on the list just was dealing with this issue.

It may also indicate that the T-score in the spine is elevated more than it should be - could be due to arthritis, scoliosis, fracture.

Or, it could be (and I hate to tell you how often this happens) that it's a poorly done or poorly read bone density test.

Anyway, if someone has this going on and the provider (primary care? oncologist?) is just Rx-ing treatment without doing a good workup, then a specialist is in order. That's what we do - look for secondary causes, evaluate the bone densities (probably more in depth than the person who signed their name to it most of the time!) and make educated recommendations on treatment.

Hope that helps someone out there!

Jorf

(Thanks Shirley)