How best to treat osteoporosis?
I had a normal baseline BMD prior to Arimidex. After 3 years of Arimidex, my last BMD showed normal lumbar spine, with osteopenia in one femoral neck and near-osteoporosis in the other femoral neck. Since then, my D3 (supplementation and dietary intake) has been increased (with calcium and magnesium), and I try to walk a mile on the treadmill as often as I can, although this is a struggle due to long-standing chronic daily migraine disease.
Because the progression to osteopenia and near-osteoporosis has been so steady and somewhat rapid on Arimidex these past 3 years, I'm sadly assuming I'll be diagnosed with ostoporosis next month after my next BMD (specifically because one reading was so close to osteoporosis). My MO has stated previously they don't want to treat osteoporosis until I am officially diagnosed with it.
What will be my "best" options for treatment once osteoporosis is diagnosed? Does one class of drugs have more serious side effects ... does one have a higher success rate? I'm aware our reactions to meds are all so different, but I would like to hear *your* experience with drugs (i.e. Boniva, Prolia, etc.) for treatment of osteoporosis, how well those drugs were tolerated, if they helped, and any other info you'd be willing to provide. I'm very concerned with side effects, particularly serious side effects.
Thank you.
Comments
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First, I took tamoxifen instead of an AI to preserve bone. Tamoxifen is a SERM, which is often prescribed for bone health. My MO agreed with me for the first couple of years, at least. The difference between the two treatment paths isn't that large - you may want to do some searching to see posts about the difference.
Second - you may find that your insurance company has a formulary of how they pay for osteoporosis meds. Most start off with Fosamax - oral, can cause acid reflux, keep my bones stable for 2 years. Actonel is often next (both this and Fosamax are generic - insurance costs, eh?). Then I was on tamox for 2.5 years - it kept me stable. Then Boniva - it was a disaster - and insurance didn't want to pay.
So, now I am on Prolia, and have no side effects or anything. Won't know til next summer how things are doing - but my endocrinologist is very high on this treatment - they are having fabulous results in their practiceHope this helps
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I am also taking Tamoxifen because of my bone density. I am hoping it will keep me stable.
Sharon
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Great, very informative replies! Thanks to both of you!
Although I was post total hyst and was able to take an AI, when I had trouble with my first AI (it severely exacerbated my major depression, etc.), I was switched to Arimidex, but also tested to see if my body would metabolize tamoxifen at a helpful rate.
Test results came back that my MO preferred for me to stay on Arimidex. I never asked about the test results because of what they said next. I have a longstanding battle with depression and have taken SSRIs or SSNRIs for years. I was told by my MO and the pharmacist one is not supposed to take tamoxifen and one of those antidepressants, and I was advised not to go off the AD, as I relapse badly when I do. I'm not sure, but tricyclic ADs may not interfere, but I don't tolerate or respond to that older class of ADs.
It was encouraging to hear Fosamax kept things stable for you, and I hope you hsve similar success with Prolia. i'm trying very hard to do all I can naturally (weightbearing exercise, diet, supplements) for my bone health.
Do Prolia or Fosamax have serious side effects? I think my MO favors Prolia, but not sure. Are both available via injection? I'm sure I can find this out online, but prefer when possible to hear replies from people taking the meds. Thanks again !! -
I took Fosamax for almost 3 years (the usual time you should take it, according to my ob/gyn) but began to have difficulty swallowing and was worried about cancer of the esophagus (sp) which can be a result.
I also sustained 3 fractures of my vertebrae, a broken wrist and a broken hip while on the drug. However, none of my docs said the Fosamax made that happen. Since I already had very bad osteoporosis when beginning the drug, they are probably right.
. However, I have read that since Fosamax causes new bone to grow on top of the old (rather than the natural way -which is bones building from the inside) it causes the bones to get brittle and they are therefore in more danger of breaking. There are law suits pending about broken hips from Fosamax. Hard to know who to believe. All you can do is research and then make a decision you feel most comfortable with. Right now I just take calcium w/D.
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Oh no, DogsAndJogs, so sorry to hear all you've endured with osteoporosis and Fosamax. Now that you say that, I do recall seeing commercials regarding lawsuits with the Fosamax class of drugs.
I dread to ask you this, but did you sustain your fractures spontaneously or through an injury or falls? -
The broken hip appeared out of nowhere. I was running in a half marathon and suddenly at mile 4 I could not move my right leg properly so had to stop. I waited 11 days to see a doctor; thinking it was perhaps a groin pull. But no, it was a fracture and I had a hip pinning procedure two days later.
The vertebrae fractures were from lifting a heavy sack of dog food (40 lbs) I think. The pain began a few days afterwards.
The wrist broke when I fell while jogging.
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Well unfortunately I have osteoporsis. My mother told me for years if I didnt start taking calcium it would happen and it did. I had osteopena before I was dx with bc an typically it is the precursor to osteporsis. My ONC had me taking Armidex initially along with calcium, Vitamin D3 and a new drug called Atelvia. Didnt have any SEs from the drugs. However, when I had to pay for the drug(before we were at 100%), I was told it would be 100 a month and we simply cant afford that on top of everything else. My next visit to my ONC resulted in her changing my meds from Arimidex to Tamoxifen. Not crazy about the drug but it does build the bones and Armidex does the opposite. My first bone density test since I have been taking it and increasing my calcium and exercising more showed improvement and the nurse said to keep on doing what I was doing because it was working. Last thing I need or any of us for that matter, is fractures. Good luck...diane
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I am allergic to all the bone builders so itake magnesium, Vit D3, calcium and zinc. So far my bones are osteopenic with one vertibrae being osteoporotic. I do have a crush fracture from a car accident that occurred many years ago and would have expected that area to suffer most bt not so, that is still strong although does show the scaring. My next DEXA is due early next year so we will see if my naturals are doing their job.
Love n hugs. Chrissy -
Thanks to all of you for your replies. I take calcium (Caltrate), separate vitamin D3 and 400 mg of magnesium oxide daily. I took only magnesium prior to my BC dx and figured my love of cheese and healthy diet would cover the calcium (did not). I've been advised, however, to take only one Caltrate a day because when I was taking 2/day, my calcium was just a tiny bit over normal and went back to normal after reducing to one Caltrate/day.
My vitamin D was low at time of BC dx and eventually my GP got it into the high 30s with D3 supplement. When I started taking only one Caltrate a day, I noticed an older friend took a slightly higher D3 dose proactively, so I upped my D3 to 1,000 IU/day (but soft gels). My latest lab D3 reading was down to high 20s, calcium normal. GP advised 5,000 IU D3 day in hard pill form, 20 minutes in the sun daily and followup D3 lab in two months because of high dosage. My MO thinks my D3 went down because I was skipping my Caltrate many days, taking it about once every 2 weeks max (because I was so afraid of it being too high).
I'm exercising on a treadmill 1.5 miles in 30 minutes (fast walk) and that's enough for now for me to break a good sweat. My goal is every day, but at least 3 days a week. I've had chronic migraines for nearly 20 years (treated), but yesterday forced myself on the treadmill. I can't keep waiting for non-migraine days because non-exercise was probably a big contributor to my near osteoporosis in one hip. So far, lumbar spine okay, but other hip osteopenic ... and that was last year. Will hear new BMD results soon (yikes).
Until then, I'm very careful about everything to try to avoid falling! -
I have no problems with Prolia at all - the shot barely hurts, even.
Now, if I had to pay out of pocket -- that would be a different story, as it costs like $1000 per injection, but that's another story. -
Dawnsm if I was in your shoes I would get a 2nd opinion from another oncologist (completely unrelated to your present oncologist - working at a different hospital than your current MO and trained at a different place) about this issue. I stayed on tamoxifen instead of switching to an AI because I was concerned about osteoperosis. My oncotype test came out low and my MO was OK with my choice. I am absolutely not saying that taking tamoxifen is right for you but I think getting the input of a different MO might help you figure things out.
http://www.nccn.com/index.php (you can use this site to look at the NCNN guidelines- see below)
Just sone other info ..... according to the latest NCNN Clinical Practice Guidelines (version 3.2013) for invasive breast cancer, "the panel recommend against CYP2D6 testing for women being considered for tamoxifen therapy" (I would find out if this was was the test your MO did for tamoxifen.)
In addition the guidelines say that "coadministration of strong inhibitors of CYP2D6 should be used with caution" but say that "citalopram and veniafaxine appear to have minimal impact on tamoxifen metabolism"
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I'll check my medical records to see if the CYP2DC6 was used. I believe the only reason they ran the test re: tamoxifen was because of my insistence about a possible switch to tamoxifen.
The main reason my MO continued to recommend AIs for me is because they feel so strongly in its use and specifically explained why to me in detail at an office visit. They took the time to explain this because they knew exactly why I was struggling with my first AI (Femara), and a subsequent switch to Arimidex was their recommendation after discussing risks/benefits. They do recommend tamoxifen pre-menopause followed by AIs, but once post-menopausal usually recommend 5 years of AIs (more years at my option) in BC patients with dx, pathology and profiles similar to mine, although there is certainly no "one answer" for any patient. I remember wondering why I was given the tamoxifen testing at all, but I believe they wanted to look at all options in light of my resistance to Femara.
When I was DX'd with BC I did get other oncology opinions, which led me to me ultimately receiving my oncology care at a well-known and very respected medical center with a dedicated cancer center. Fortunately, my insurance allows me to receive my oncology as well as all other medical care there. -
Dawn, have you seen an endocrinologist? Mine told me that diet and exercise won't do enough if there is an underlying cause (in this case, meds that cause bone loss). Due to bone issues, I cannot take an AI so even-post meno I'll be taking tamox. sorry to hear about the other drugs being in conflict. FWIW in the last few years, the CYP test has fallen out of favor as a means of determining whether a patient metabolizes tamox. Dr. Susan Love has a good article on her website--just google. Good luck with this!
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I was osteopenic prior to BC dx, most likely due to being caucasian and of slight frame - normal risk factors, and the total hyst/ooph done when I was 45 - 9 years prior to BC. I had remained stable for many years and had a bone density done on the same day as my mammo/US, so I had a good pre-treatment baseline. After chemo and 6 months of AI (Femara) I had demonstrated loss at every point of measurement, but had not progressed into osteoporosis. My MO feels that Prolia was warranted because of its treating, repairing and preventative properties. I had tried Actonel and Boniva long ago but could not tolerate the SEs because I had reflux surgery in '95. I have received 3 Prolia injections (6 months apart) and am due for my 4th next week. I have had zero side effects from Prolia. I have been advised to have any dental work done only at the half-way point between injections, but I do regular cleanings and have not required any invasive dental work (implants or jaw surgery) since starting Prolia. I will be having a bone density done fairly soon since it has been two years since my last one. My undertanding is that it does take about that long for Prolia to potentially begin to reverse any existing damage. Prolia does carry the rare ONJ SE but in trials only at very high doses given for bone cancer, and it works differently from the bisphosphanates as it is a monoclonal antibody with a targeted mechanism. Bisphosphanates (Actonel, Boniva, Fosamax, Reclast) work by binding to the bone, this can cause the brittleness that does not allow enough elasticity in the bones and cause fractures. Post-menopausal women sometimes have an aging bone cell removal process that is too rapid and Prolia slows this down.
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Hi SpecialK -- We share some things in common, as I'm of slight frame and had a total hyst/ooph about 8 years before my BC dx, same age, similar pre-Arimidex bone health. I forgot how the hyst might have affected my bones (and my vitamin D was deficient at time of BC dx). Only exception is that I didn't have chemo.
I re-checked my BMD report and I was mistaken. My baseline BMD showed mild osteopenia and last year the osteopenia had really jumped and one hip is nearly osteoporotic. I blame myself, as I didn't take bone health as seriously as I should have in the beginning and started to catch up with regular treadmill exercise after my last poor reading, despite a chronic illness making exercise a challenge. I hope the exercise and supplements/diet have helped slow things down.
I'm extremely excited to hear about your experience with Prolia injections and found your Prolia info was quite helpful. I'll have to read up more on the Prolia dental/jaw issues to see why it causes some of those problems. I had crowns put on most of my upper teeth for dental health and cosmetic reasons -- it was quite costly but looks great. Would the Prolia destroy my upper crowns?
Thanks for the kind reply. -
Hello ladies, I am very interested in this discussion.
I'm also of slight build, caucasian, Stage 1 (2001, lumpectomy, radiation, 5 years tamoxifen) and another cancer that they felt was a tiny piece that was missed, held in check by the Tamoxifen, that grew once I got off of it. So, again, stage 1, no nodes, but t his time a mastectomy and reconstruct. I'm almost done with arimidex. Not at all a happy camper nowadays; had an ooph/hyst and issues with dryness and intimacy big time. Onc. doesn't reccomend estrogen replacement cream except for the tiniest amount. I was highly ER+. Suppose I' m certainly not now!
Haven't had a bone density since whenever, since I was opposed to bone drugs. Didn't see the point. however, I will be getting one soon! And I am also wondering what drugs if any are the best. How long has Prolia been around? I am concerned over the drugs that they tout as "miracles" only to find out SEs 5 years out are very serious. (Like the fossie jaw they speak of).
Was osteopenic at last scan, was explained to me that this is NOT osteoporosis and they do not treat it and that it is not a slam dunk to osteoporosis. It can be a pre cursor but not at all a definite. I take calcium (1200), D3 (2000), magnesium 300-400 and I exercise about 3x weekly or more for 1/2 hour on an airstepper.
Anyone that can illuminate me on Prolia, vs. Zometa (which they wanted to give me when I got off arimidex as they thought it protected against recurrence). Now they know that it does not, I'd be interested to learn if any long term SEs from Prolia and what they are are common?
*** gosh, just read up on Prolia....no way am I taking that stuff! Horrifying!
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I tend to listen to how well people on these boards do on drugs. I am greatly encouraged by Prolia. Many folks here are having no problems. On paper, the stuff looks scary as heck.
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dawnsm - I also have a number of crowns - some dating back to high school, and I am 56. The ONJ issues for both bisphosphanates and Prolia tend to take place in people who have chronic jaw issues already, have dental surgery or implants, or who are on very high doses of the drugs for bone cancer. I have had no issues with my crowns since starting Prolia - I have them on both sides of my mouth and on both upper and lower jaws.
anniealso - your ER percentage is a measurement of the number of receptors on 100 cells viewed, not a measurement of your level of circulating estrogen. I was 96% ER+ and post-menopausal.
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I saw my DDS last week. She said the concern with the bisphosphanates is that they slightly alter the way bone is rebuilt (a continuing process) and there are fewer blood vessels in the bone.if you don't have problems or need an extraction or a new implant, then it should be fine. But if something does happen, the reduced blood flow can complicate issues. I.e. If a patient gets an infection, it becomes harder to treat. Everyone needs to decide what makes sense for them. I have a rare bone condition so I can't ever take those drugs. But most people are fine. You may want to consult with your own DDS. If you still have impacted wisdom teeth, for example, you can reduce the risk of complications by having them extracted before starting those drugs.
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Just got the results from my bone density scan - I have rebuilt over the 18 months of having Prolia injections to the point that I am no longer classified as osteopenic at any measurement point. I was osteopenic prior to BC diagnosis and had demonstrated loss at every measurement after chemo and six months of Femara. All of my measurements now fall into the normal category. For those who are unfamiliar with Prolia - it works differently from bisphosphanates in that it is a monoclonal antibody drug. Bisphosphanates coat the bones and make them less elastic, some people suffer fractures because their bones do not bend enough and when stressed they fracture. Aging can cause osteopenia and osteoporosis because the mechanism that removes older bone accelerates and makes them less dense. Prolia slows this process down and helps strengthen the bones. I have had no side effects (that I am currently aware of) and am very happy with these latest test results. I am 96% ER+ and need to take an AI, so I am quite willing to continue with Prolia for now.
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Congrats on normal, SpecialK!
Regarding ONJ, it's possible to have a test done before an invasive procedure to see what your risk might be. I had this test done (CTX) and it showed no abnormal bone resorption activity. I had a crown replaced and a cavity filled before the summer and everything healed smoothly. It had been a year since my last Zometa infusion.
I'm just reading a book by David Agus, "End of Illness" and in one part it talks about how bisphosphonates might prevent recurrence. One of the theories is that the reduction in blood vessels may help starve cancer cells and another is that stopping bone loss may stop the release of carcinogens like cadmium from the bone where it's been accumulating for ages.
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heidihill - I also just recently had dental work done in the halfway point between Prolia injections and had no issues. Hope that remains the case, and glad you had no issues either. I had read a bit about the bisphosphanates - is this recurrence in general, or recurrence in the form of bone mets? I just looked at a couple of articles, linked below. The one concerning Prolia is an insurance company memo but had some good info about Prolia and bone health/mets, specifically regarding aromatase inhibitors and breast cancer:
http://www.ncbi.nlm.nih.gov/pubmed/22307370
http://www.aetna.com/cpb/medical/data/800_899/0804.html
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Hey SpecialK, Oh that's good, no, that is GREAT news, you made my day! Congratulations!
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Agus cited Gnant (author of your first link above) and Gnant talks about "bone and beyond." So I think that means recurrence in general.
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My oncologist is pushing for me to take Prolia injections. I have read and studied the side effects, and read many patients testimonials. Scary, to say the least. I am thinking I won't do them, but I need to do something. I need some input? Just don't know which way to go, he says my bones are starting to show signs of osteo.
Help?
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horsegal13,
Are you taking an AI for DCIS? Have you had your Vit D level checked and is it up in at least the 60s? Do you have a family history of osteoporosis? Do you do any pounding exercise like lots of walking, jogging, rebounder, stair climbing? Any weight lifting? If your bone density is going down despite doing everything you can, then your MO may be suggesting the only other thing he knows to do.
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