bones bones bones: osteoporosis and related concerns

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  • LouLou40
    LouLou40 Member Posts: 180
    edited June 2011

    Largo,

    My ER and PR % were both 20% 

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  • lago
    lago Member Posts: 17,186
    edited June 2011

    LouLou  Thanks. I don't now if my 30% ER-5% PR is in the same "low" category as you but I would think it is. There is something comforting when they say the Herceptin/Chemo are our most important guns. Thing is I didn't do neoadjuvent therapy so I have no idea if it was working. I was highly HER2+.

    At least I know I will have another bone density scan in the fall. I'm so glad I mentioned to my onc about my concerns about my bones and my moms history with osteoporosis. Although my osteopenia is very mild we now have a base reading (before chemo started) and she put me on calcium.

    BTW I don't seem to be having any SE from Anastrozole. My night flashes (that weren't too bad to begin with) are now gone. Funny but my sister has been going through meno-pause for several years (actually done) but still has issues with hot flashes!

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

    JoyLiesWithin, here the the doses the nutritionist recommended:

    Vit K2, also known as menaquione: 45 mg/day (found in meats and cheese)

    Vit K1 aka phytonadione 1 mg/day (food rich in K1 include cabbage, cauliflower, spinach , cereals and soybean)

    More than that can create risks, so she recommended getting Vit K from food.

    I need to find a different computer to post her full msg but FYI. This is a great discussion everyone. 

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited June 2011
    elimar, thanks for all your comments. I think we're of the same mindset. Can't remember if I posted this elsewhere, but I asked for a DEXA scan prior to my lumpectomy. I have an extremely rare bone condition that can result in osteoporosis, so I wanted a measurement of my bone health and whether rads would even be an option. I know what you mean that the measurements are based on a healthy 30 yr old woman. I'm 46 and so even though my numbers fall into the osteopenia range, they said my score was normal for my age. After researching this, in my opinion, my femoral neck mean t-score is at the far bad end of the range.  FWIW, I was also diagnosed with a milk allergy at age 14, so I think I didn't build up the bone mass of most women. My MO is recommending another DEXA scan in 2-3 years (I'll be on tamoxifen) so in her opinion the rate of change is important, too. i.e. the anatomy of my bones may have started out less, but may not be degrading any faster. FWIW,  bisphophonates aren't an option for me. Due to my other issues, I can't afford any risk of jaw necrosis.
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  • sam52
    sam52 Member Posts: 950
    edited June 2011

    jaksnana  - No, I am no longer taking an AI (it was aromasin); I stopped nearly a year ago, after being on it for 5 years.

    The only way I knew I had parathyroid disease was because I had consulted an endocrinologist  for my osteoporosis; she ordered a full blood test, including parathyroid hormone levels.

    I would be interested to know if anyone else has had their bone density assessed for treatment using the FRAX test.I am still quite concerned that my levels (-2.5 in the spine), fall within the 'do not treat' area.

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited June 2011

    "My onc said that tamoxifen is only protective of bones if you are pre-menopausal.   So, while it may not be as bad as an AI, it can still cause problems."

    Tamoxifen is a bone-loss drug in pre-menopausal women.

    And with the new studies on calcium supplementation, I must say, I'm really at a loss for what to do.  Will be interesting to see my bone density test, I will ask for one soon.  I was 39 at diagnosis, very strong family history of osteo.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited June 2011
    LtotheK, I'm not sure that Tamox creates bone loss in all pre-meno women. The studies I saw cited by members on this website pointed to certain specific scenarios (women who had chemo and had a chemo-pause?)  I'm very interested in this topic. If you can point me to a source I'd love to do more research. Thanks.
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  • otter
    otter Member Posts: 6,099
    edited June 2011

    Re:  FRAX analysis to estimate fracture risk

    My docs told me the same thing elimar said.  I was mildly osteopenic when I started Arimidex in June 2008, but my med onco wanted to wait to see whether my bone density got any worse before treating it. Neither she nor my osteo doc think "osteopenia" is a disease that needs treating.  My osteo doc used my medical hx and DEXA results to run a FRAX analysis, and it ended up that my risk of a fracture is not high, even though I'm osteopenic.

    Anybody can use the FRAX calculator.  It's on this website:  http://shef.ac.uk/FRAX/ 

    BTW, I had a follow-up DEXA scan after I'd been on Arimidex for 2 years; and my bone density had not changed a bit.  So, no bisphosphonates for me... at least, not yet.  My next DEXA scan is still another year off.   By then, I'll be finished with 4 of my 5 years of AI.

    otter

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  • sam52
    sam52 Member Posts: 950
    edited June 2011

    LtotheK - I'm sorry, but you have contradicted yourself......Tamoxifen does NOT cause bone loss in pre-menopausal women.

    Tamoxifen is generally thought to be protective of the bones, since it does not deplete estrogen, simply modulates the estrogen receptors selectively.

    It works in a completely different way from an AI , which is known to cause bone loss, since it prevents the manufacture of estrogen (via  the enzyme aromatase in the adrenal glands).

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

    I don't know that LtotheK was contradicting herself.  The first statement in her post was referencing an earlier post by another member. 

    Here's something from Drugs.com, in a paragraph commenting on the NSABP P-1 Trial:

    Although there was a non-significant reduction in the number of hip fractures (9 on Tamoxifen, 20 on placebo) in the Tamoxifen group, the number of wrist fractures was similar in the two treatment groups (69 on Tamoxifen, 74 on placebo). A subgroup analysis of the P-1 trial, suggests a difference in effect in bone mineral density (BMD) related to menopausal status in patients receiving Tamoxifen. In postmenopausal women there was no evidence of bone loss of the lumbar spine and hip. Conversely, Tamoxifen was associated with significant bone loss of the lumbar spine and hip in premenopausal women.

    Regarding what peggy_j stated:

    http://jco.ascopubs.org/content/24/4/675.full

    The effects being noted on premenopausal women who had done chemo.

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited June 2011

    Two oncologists at top hospitals have told me that Tamox operates completely differently in pre- and post-menopausal women.  I am going to look for studies, elimar pointed to one I'm going to check out, too.  I would be THRILLED to be wrong on this, given my very serious family history.

    Both oncologists told me that I was going to have to be extremely careful, as Tamox is a bone loss drug in pre-meno women.  I did chemo, perhaps that's also part of the scenario.

    Again, would absolutely love to be wrong.  I find this so very traumatizing, the aftereffects of our treatments.  

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited June 2011

    Elimar, that is a great link.  Basically, if you continue to menstruate after chemo, you will experience bone loss if on Tamox.  Well, there's one possible nice thing about having gone into chemopause (9 months approx and no sign of period...)

    What I really hope is that my oncologist won't switch me to an AI.  I have a strong feeling that the heart and bone issues overshadow the additional benefit of the AIs vs. Tamox in the younger set.

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

    That study says that chemo patients also lose bone density if they are in chemo-pause, BUT that in that group, the women on Tamox. fared better, losing lesss density.

    "In contrast, bone loss was reduced among tamoxifen-treated women as compared with controls in patients who developed chemotherapy-induced early menopause. In amenorrheic patients, the lumbar spine BMD values decreased –6.8% in tamoxifen users and –9.5% in the controls, respectively."

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

    Breaking News:  Study supports Aromasin for Prevention in Postmenopausal Women.

    The only thing I am not sure of is the article stating, "...may also give exemestane the edge over tamoxifen, making the aromatase inhibitor actually the preferred agent for primary prevention."  Maybe they meant to qualify that edge for postmenopausal women.  There will still be a huge number on Tamox., due to premenopausal status.

    Well, it's good news for Aromasin takers out there.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited June 2011
    elimar, thanks for posting. That was the same study I'd seen posted on BC.org before (perhaps by you). FWIW, I didn't have chemo but when I met with my MO last week I brought this up and she said chemo can cause bone loss. We didn't get into the specifics of that study since it didn't apply to me and she said that tamox should prevent bone loss for me. (and she wants to run another DEXA scan in a couple years, so we'll be watching) If anyone has seen studies/evidence to the contrary (bone loss on tamox w/o chemo), please let me know. thanks (isn't this crazy, all these confusion scenarios? arg)
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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2011
    All the studies I have looked in the last week of researching confirm that Tamoxifen thins bone in pre-menopausal women and increases bone strength in menopausal women. But when Tam is stopped after five years the loss of bone is greater than the gain so there is a large net loss in the hip.
     
    In the ATAC study I posted earlier on post menopausal women only,
     
    At the five-year mark, women in the substudy's tamoxifen group had actually gained bone mineral density: 2.77 percent to their lumbar spine and 0.74 percent to their hip. All gains occurred in the first two years and did not increase over the next three.
     
    But then in a different study on the loss of bone on withdrawal of Tamoxifen after 5 years, 
    After 1 year, withdrawal of tamoxifen was associated with a significant 5.2% (0.040 g/cm2) decline in BMD from baseline at the femoral neck 
     
    That's a net loss of 4.46% after one year and the loss continues for a few years before easing.
     
    I feel sickened by this discovery as my onc spent some time convincing me to take Tam on the grounds it would strengthen my bones without mentioning the eventual loss on withdrawal of Tam.
     
    Here are the study links:
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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2011

    I PM'd the moderators and requested they make a separate forum section for "osteopenia, bones and bisphosphonates" and let us know on this thread what their decision is.

    I listed the following subjects that were of concern and deserve to be all together on the same foum section rather than spread around the general forum:

    ----------------

    Bone density scans; how often? How accurate? How to read the results? Cost and insurance? What if my specialist won't recommend one?

    Osteopenia; What does it mean? When do I need to use heavy duty drugs?

    AI's and bone density. Are they all the same for our bones? How long to take them? What if I don't want to take bisphosphonates?

    Chemotherapy and bone density; Is it only linked to chemo pause? Which chemo's are problematic?

    Tamoxifen reduces bone density in premenopausal women; Should I have a bone density scan first?

    Tamoxifen increases bone density in post menopausal women; Same as above.

    Withdrawal of tamoxifen reduces bone density leaving a net loss; Will I be worse off than before starting Tam? What can I do now I've started Tam to avoid the withdrawal? What if I don't want to use bisphosphonates?

    Phytoestrogens; Should I avoid them? Will they help my bones?

    Bio-Identical Estrogens and progesterones; What are they? Are they safe? Will they help my bones and is there a withdrawal effect if I stop them?

    Calcium; how much to take and does it cause heart problems or hypercalcemia?

    Vitamin D; How much to take, what blood levels are acceptable, how much sun?

    Vitamin K; what type to take, what about blood thinners? Will it cause blood clots? What are the signs of a K deficiency?

    Strontium; should I supplement? What type? Food source? Side effects?

    Bisphosphonates; oral or IV? Side effects of infusions? How long to take it? Osteonecrosis of the Jaw? Atypical fractures of the femur? Gastric problems? What to use if I'm not prepared to take the risk or I've already had severe SE's? Will my chance of recurrence be lowered?

    Exercise; Which ones? How often? Lymphedema? Painful joints restrict exercise due to AI's or other reasons? Vibration platforms? Rebounders? Weighted jackets? Body weight? Which diet is safe for bone density?

    Fractures; are they linked to bone density in BC women? Do they heal normally in osteoporotic bones?

    Metastasis; Are they more or less likely with any of the above drugs? Stage IV ladies would have plenty of questions.

    Osteoblasts and osteoclasts; How can I build more osteoblasts? Is osteoclast suppression the cause of ONJ and atypical fractures? What role do osteoclasts have in bone metastasis?

    Other nutrients; Does folic acid, B12 and B6 help? Silicon? Boron? Green tea? Omega 3 fatty acids? Will magnesium supps reduce calcium levels? Manganese? Zinc? Why are prunes risky?

    Other conditions; Hyperparathyroidism, Thyroid disorders etc. Endocrinologists role?

    New studies are constantly being published and bring up questions that deserve discussion, eg:

    http://www.medicalnewstoday.com/articles/226176.php

    Risk Of Fractures In Later Life Not Reduced By High Daily Calcium Intake

    Article Date: 25 May 2011

    -Sheila- 

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  • LtotheK
    LtotheK Member Posts: 2,095
    edited June 2011

    Sheila, that is fantastic!  Let's hope the moderators give us the space for that.

    Melissa

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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2011

    I had an initial reply and they're going to discuss it.  So, fingers crossed.

    -Sheila- 

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

    Thanks for setting a new forum in motion. There definitely is a need for it.

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

    Thanks for doing that, Sheila.  I really think it would be useful.

    otter

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  • jacksnana
    jacksnana Member Posts: 168
    edited June 2011

    Thanks Sheila.  You are spot on with the topics.  This affects so many of us.  Keeping this topic going here helps until they get the new forum going (I'm thinking positive!).  I've learned a lot!

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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2011

    I woke to a lovely surprise,   We have a section for our weary bones so we can find relevant information easier in the future.  Many thanks to the moderators.

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  • wenweb
    wenweb Member Posts: 1,107
    edited June 2011
    Joy I just discovered this thread.  Thanks for your inquiry to the moderators!!  
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  • peggy_j
    peggy_j Member Posts: 1,700
    edited June 2011

    Wow, I just discovered this new forum. Thanks Joy, the moderators and whoever else helped make this happen. Good to see everyone over here. ;)

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  • runningran
    runningran Member Posts: 4
    edited June 2011

    What is a Dexa Scan?

    I have bone mets 4yrs now

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  • TinaT
    TinaT Member Posts: 2,300
    edited June 2011
    runningran:  A DEXA scan is another term for a bone density test. 
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  • luv_gardening
    luv_gardening Member Posts: 1,393
    edited June 2011

    Runningran, I see this is your first post.  Welcome to BCO. (Breast Cancer . Org) 

    You'll find yourself right at home in the Stage IV section if you can find it. The women are very friendly and supportive there and have been on the same journey.  I can never get forum links to work or I'd give you the link.   .

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  • KathleenLa
    KathleenLa Member Posts: 17
    edited June 2011

    Hi:

    Check out information on Goat's Colostrum.  Wonderful supplement.

     Kathleen 

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

    Yes, goat kids love it. 

    OTOH, I've seen fresh colostrum right out of the cow (or goat).  Bloody, chunky, snotty mess.  Full of good things for the calf (or kid), though.

    otter

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