osteopenia

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jinky
jinky Member Posts: 746

I have osteopenia. My doctor told me this 3 yrs ago. I have been on femara almost 4 years. She told me to take extra calcium which I do. I only have 11 and 1/2 mts to go on femara. Should I have another bone density test?  My onco 4 yrs ago just told me to have 1 test and told  me my bones would be okay... I have problems with indigestion so I don't know what I could take? What do you think?  I am 70 yrs old. bc hugs jinky

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  • otter
    otter Member Posts: 6,099
    edited October 2011

    jinky, it seems to me that your doc should have ordered another DEXA bone density scan by now.  My insurance pays for one every 2 years, for menopausal women who are at risk of osteoporosis.  At your age, you are certainly at risk; plus there's the pre-existing osteopenia and the 4 years of Femara.

    It's true that your bones might be okay.  I've read that women who have normal bone density when starting an AI are less likely to lose bone density on the AI than women who start out with thin bones. My med onco ordered a baseline DEXA scan when I started taking Arimidex 3-1/2 years ago, and it showed I had mild osteopenia -- barely below the "normal" line.  Neither my med onco nor the osteoporosis doc she had me consult wanted to put me on a bisphosphonate drug at that point -- they both wanted to wait and see.  They told me to take calcium citrate and Vitamin D3, play outside in the sunshine, and get lots of weight-bearing exercise.  Let's just say I try...

    My follow-up DEXA scan after 2 years on Arimidex showed no change -- I'm still osteopenic, but it hasn't gotten worse.  So, everyone is still taking a wait-and-see approach.  I have another DEXA scan scheduled for Fall 2012, after more than 4 years on Arimidex; and I'm hoping things are still stable.

    You won't know unless they check, though... right?  Hugs...

    otter

  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    jinky --

    Vitamin D is probably even more important to be taking than calcium, though chances are the calcium you take also contains Vitamin D. Make sure you're getting enough D.

    I strongly agree with otter that you should have a DEXA scan. I think it's really negligent of your doctor not to have ordered one!

    I too have digestive trouble and can't take the oral drugs for osteoporosis but there are many injectable drugs. I've been on those for 5 years and my bones have improved quite a bit. 

  • GramE
    GramE Member Posts: 5,056
    edited October 2011

    Not being a medical doctor, I would strongly urge you to get a Vitamin D blood test and a follow up DEXA scan.   Ihad to fight tooth and nails to get Vit D blood test and finally got it from my endocrinologist. Interesting is my Primary had to write a referral for the endo, but would not order the (simple) blood test herself.    

  • jinky
    jinky Member Posts: 746
    edited October 2011

    Thank you all so much. I am on 1000mg vitamin D and calcum citrate 1000mg which I believe works out to 400mg. I use 3 glasses of milk a day and take magnesium to. I will definitely ask for another bone scan. I am in Nova Scotia Canada and it is free here, not really we pay 15% tax on most things. I go back to the doctor the end of November. Thank you so  very much. I will post when I have the scan, probably in a couple months. bc hugs jinky

  • dlb823
    dlb823 Member Posts: 9,430
    edited October 2011

    jinky ~ I recently went to a Naturopathic doctor for a similar concern about osteopenia, after my PCP and own research didn't yield any good, natural help.  And she did a number of things I believe will help. First, she put me on a supplement that's a blend of minerals, including boron, that are needed to properly process the calcium citrate & magnesium supplement I was already taking (along with 2000 IUs of D).  She also checked my thyroid and other hormomes, and I'm now on a natural thyroid stimulating supplement and 2 other hormones that she explained affect metabolism and calcium absorption.  

    I'm now convinced that no amount of calcium/magnesium/D3/weight bearing exercise alone would have impacted my osteopenia, but I'm hoping this more comprehensive, holistic approach will.    Deanna 

  • GryffinSong
    GryffinSong Member Posts: 439
    edited October 2011

    I had severe osteopenia when I finished chemo and rads. I was just a hair's breadth away from osteoporosis. That was two years ago. In the meantime, I was on tamoxifen (instead of an aromatise inhibitor) because it can help build bone. I took Boniva. I took supplements of calcium and vitamin D. I just had my two year bone scan and I'm psyched to report that my leg bones are in the normal range and my spine is just barely below normal. I am delighted, and would definately recommend you get a bone scan every two years so you know what's going on.

    Hugs and good luck!

  • DFC1994
    DFC1994 Member Posts: 163
    edited October 2011

    I have osteopenia also and take calcium with D and also get zometa treatments every 6 months. I just had my Vitamin D level checked in August and it was in the 40's. I don't know what is considered normal. What is normal? Is mine high or low. The Dr didn't say anything about it. I will get another dexiscan Aug.2012.

    Dee

  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    DFC: The Institute of Medicine committee concluded that a serum 25-hydroxyvitamin D level of 20 ng/mL is desirable for bone and overall health. The Dietary Reference Intakes for vitamin D are chosen with a margin of safety and 'overshoot' the targeted serum value to ensure that the specified levels of intake achieve the desired serum 25-hydroxyvitamin D levels in almost all persons. It is assumed there are no contributions to serum 25-hydroxyvitamin D level from sun exposure and the recommendations are fully applicable to people with dark skin or negligible exposure to sunlight.

    The Institute of Medicine found that serum 25-hydroxyvitamin D concentrations above 30 ng/mL are "not consistently associated with increased benefit". Serum 25-hydroxyvitamin D levels above 50 ng/mL may be cause for concern.

    From http://en.wikipedia.org/wiki/Vitamin_D#Serum_25-hydroxyvitamin_D 

    Gryffin Song: I don't mean to sound critical, but it's important to distinguish between "bone scan" and "DEXA scan." A bone scan is something done to determine whether you have cancer in your bones. A DEXA scan is done to check your bone density.

    I'm pretty sure what you had was a DEXA scan rather than a bone scan. People who haven't had cancer often use the term "bone scan" when they mean DEXA, but here in the BCO boards you can freak people out if you say you've had a bone scan!

  • GryffinSong
    GryffinSong Member Posts: 439
    edited October 2011

    Sorry, yes I had a DEXA scan. I've had stage two breast cancer, but there is so far no fear of mets, so had not yet gone down the road of understanding that kind of terminology. Quite frankly, I freak out if I read too much until/unless I have to know. Thanks for clarifying.

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited October 2011

    hi all:

    This is a little bit off topic (well, not really) but I am having some digestive issues with all the calcium!

    I had horrible heartburn with any pills I took but was able to use those calcium chews.  I take those, with the 500 mg. each of calcium and D3, supplemental D3(400mg), a multi vitamin and magnesium (400 mg) to absorb the calcium.  I also take salmon oil caps.

    Let's just say I am the queen of " toot toot".  Also hm, uh, "backed up" big time.  Dr. said it's calcium.

    What does everyone else take here?  My calcium is about 1500-2,000 and onc says just right; GP says far too much, as I have digestive stuff going on.

    I have mild osteopenia also, and don't want to take biophosphates.

    Anyone?

  • elimar86861
    elimar86861 Member Posts: 7,416
    edited October 2011

    anniealso,  Aim for 1000-1200 mg. or calcium daily, taken separately in two doses of no more than 500-600 mg. at a time.  At each dose, take your magnesium with it (a 250 mg. tab each time should be fine.)

    If you are still "backed up" taking that amount, perhaps make some dietary changes, like more fruit, veggies, fiber, water, etc.

    Otter,  I was told I was "osteopenic" when I got my baseline screening.  Reading my report, I noticed it was "just barely" like .5 of a percentage point.  I take the above doses of calc. & mag. and won't know until early next year how I've done in the past two years.  I am not that concerned at this point.

    Osteopenia ia a vague type of label, especially on the first (baseline) scan you get..   It is based on the values of a mythical average woman.  We might not all fit the mold perfectly.  Some of us may naturally have slightly less dense bones and do just fine never progressing to osteoporosis.  Good to ask if your levels are just slightly lower than the "norm."   I think what is important is to have a baseline DEXA scan done, and then monitor it to see if you do have a trend toward bone loss.   In the case of women just slightly "osteopenic," that will be more revealing than  just the initial value alone.

  • Heidihill
    Heidihill Member Posts: 5,476
    edited October 2011

    My stomach also can't deal with the calcium tablets that well so I take dairy products, soy and veggies. My onc tells me it's better anyway. My dexa scans are above average but that could be from taking zometa (for bone mets) until a year and a half ago.

  • stage1
    stage1 Member Posts: 475
    edited October 2011
    I heard that magnesium is good for digestion of calcium. FYI< I am off soy because I am thinking that it is just a natural form of estrogen, something we ER+ BC do not need.
  • cycle-path
    cycle-path Member Posts: 1,502
    edited October 2011

    anniealso: I can't take the calcium either but I take Vitamin D. The docs seem satisfied with that.

  • peggy_j
    peggy_j Member Posts: 1,700
    edited October 2011

    anniealso, I heard that we should have ~1200 mg of calcium daily including our food. (I get 700-800 mg/day from my diet and don't even drink milk!) Calcium is highly insoluble and taking too much can lead to kidney stones and other probs. Our body can only absorb 500-600 mg at a time. The nutritionists I spoke to said it's much better to get it from food.

    Osteopenia is based on the mythical 30 yr old woman. The Z-score (age-rated score) is the one that's more important but as others have said, it's an average so being a little below is no biggie.

  • lbrewer
    lbrewer Member Posts: 766
    edited October 2011

    calcium tablets upset my stomach too.  TUMS don't,  maybe cause they are already chewed?  But each TUM has 400 mg of elemental calcium. I take 2 a day which is 800 out of the 1200 reccommended.

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited October 2011

    thanks all, for the good advice.  I quit the chewables two days ago and have already seen my stomach calm down.  I wasn't really counting the food!

    I'm going to stay away from supplemental for a week or so, count it in my foods, and see where we go.  When I reintroduce it, I'll know.

    As per the osteopenia: my GP is against biophosphates, and if one must, only for 5 years.  After 5 years on them, they have a worseing effect on the fractures one might (might) get.

    The average 16 year old girl is mildly osteopenic, she told me!  And it may just mean you are small boned.

    thanks,all

  • Annabella58
    Annabella58 Member Posts: 2,466
    edited October 2011

    p.s. I am ER+ and was told absolutely NEVER to soy.  Soy sauce, is fine, or mild forms, but no food souces of it, such as edame, tofu, etc.

  • nastazia_s
    nastazia_s Member Posts: 57
    edited November 2011

    DFCE1994: Did you see any improvement for your osteopenia with Zometa?

    I will start soon Zometa and im searching for more info...

    Did you had any side effects? How many times fid you had?

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