Anyone w/ osteopenia NOT taking preventive medication?
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My MO is on leave until April 1st so I won't be talking to her until later this spring. In the meantime I'll discuss the issue with my dentist at my next cleaning appointment.
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Hi ByFaith,
I have osteoporosis, believe me, you don’t want this. Even with the medications it’s very hard to grow bone. I have spinal fractures that causes problems. I haven’t been recommended for the hormone drugs yet however I don’t how I can deal with forcing bone loss.i wouldn’t wait if you’re willing to take osteoporosis meds. It takes years to grow bone. Waiting until April is no big deal though
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I agree with Veeder. I have osteoporosis. Not fun. I take Boniva once a month, calcium tablets and Vitamin D. We are at a much greater risk of bone fractures so we have to take meds to keep that from happening.
Admittedly Idk whether taking the drugs now will help or not ward off osteoporosis but I am also a fu believer in preventive maintenance.
When I was DX with BC my MO prescribed Arimidex. I had osteopenia at the time. Arimidex attacks the bones. Not a smart decision by her so after one year I complained about it and she switched me to Tamoxifen. It could have made the difference. I’ll never know.
Diane
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thanks aterry, im leery too
The drs really dont care about side effects and always down play them
Its damned if you do or dont!
Anyone have positive results after several years ? All i hear is as soon as they stop their bones start breaking
Its very distressing
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MamaOz,
If you mean positive results from bone building medications~years before cancer I was treated with Forteo (daily injections for 2 years) It really worked, grew bone however you can't stay on it after 2 years and my doctor wanted me to switch to infusions of Boniva? I declined but then lost the bone I gained. Tried Prolia and stopped after complications with dental.
I don't know how the Tomixifen and other meds are measured as to whether they are doing any good. Taking harmful medications that might or might not help, that's what bothers me, besides possible severed side effects.
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thanks veeder14
My same thinking! Im so stiff and achy from arimidex and my ribs stillare tender from radiation that i finished on Oct. so im thinking the arimidex is contributing to slower healing too
So to add another med that may only temporarily help my bones. And they still end up brittle ?!? Is cause for concern not to mention the other nasty side effects..
Thanks for respondin
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Okay, I realize nobody has posted on this thread for almost a year, but I just saw it (I haven't been around lately) and I thought I would offer some encouragement.
The original question was, "Anyone w/ osteopenia NOT taking preventive medication?"
The answer is YES.
My bone density was way up in the green zone when I hit menopause in 2003, so I was disappointed to learn 5 years later that I was osteopenic. (They do say most of our menopause-associated bone loss occurs during those first 5 years.) My med onc had ordered a post-chemo, pre-Arimidex (baseline) DEXA scan, and it showed my hip and lumbar spine to be mid-range osteopenic. She wanted me to start on Arimidex/anastrozole, which I did. She did not support using a bisphosphonate in someone who didn't have osteoporosis and wasn't at high risk of fracture. She did refer me to an endocrinologist at my cancer center who specialized in bone issues. That doc calculated my FRAX score (fracture risk) and agreed that a bisphosphonate was not indicated (yet).
Fast-forward 10 years.
My med onc took me off Arimidex/anastrozole last May, after I hit my 10-year mark. I had been taking it non-stop -- no breaks or vacations. I'd been having DEXA scans every 2 years (the most my insurance would allow), and my bone density did slip a bit in my lumbar spine...but it never went below the osteoporosis threshold, so nobody wanted to start me on a bisphosphonate (or Prolia). In conjunction with that 10-year recheck, I had another DEXA scan. My bone density not only held steady, but it even climbed a smidge in my lumbar spine. The tech scanned my wrist/forearm as a double-check (they do that when there's a discrepancy or unusual finding in the spine or hip). All 3 sites were still osteopenic, but no worse than they'd been 2 years, or even 4 years, earlier.
So, yes, it's possible to start an AI when you're already osteopenic, and get through 10 years of AI treatment without developing osteoporosis even though you're not taking a bisphosphonate. The even better news is that bone density can *improve* once you stop taking the AI.
https://academic.oup.com/annonc/article/22/4/857/2...
Nobody knows whether that will translate to a decrease in fracture risk, but it's going in the right direction.
otter
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Otter, congratulations on your ten years! Thank you for sharing your experience and knowledge. I am osteogenic and my MO does not want to give me any bisphosphonate. I am concerned about my bone density while on letrozole. Your post has given me some reassurance.
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otter thank you for posting that. I just read something similar here, it may have been by you in the hormone therapy section. Very encouraging.
I had my 1st DEXA scan the same day I had the dreaded mammo. I failed both. My femoral neck is right below the osteoporosis score and the other 2 areas are osteopenia. I'm still delaying the start of Prolia that has been recommended for me. I was going to have my 1st shot last month but the MO asked that I see a dentist 1st as a precaution to not cause a problem. Haven't been to dentist yet (it's this week though) I am wondering if it's an insurance requirement now?
Now I'm not worrying so much if I don't start Prolia for a few more months. I doubt the MO will let me wait until Dec when my 2 yr DEXA will be due again?? I may ask for that consideration but I feel they will want me to take the shot. If I do then I'm coming off the AI in 5 yrs!! Which is the plan now anyway. So much information and benefit vs. risk. I really don't like this disease.
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I have osteoporosis and my internist recommended the Prolia shot.Not doing it. Too many possible side effects. I have dental issues already so can’t take the chance. I take Boniva once a month along with calcium and Vitamin D3.
Diane
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Good news / bad news. Failed my dentist appt. yesterday. I have gum disease and could possibly lose a few teeth. Yikes. So, I wrote to my MO and said obviously I want nothing to do with Prolia right now. Cancelled that appt. Asked if we can we revisit this whole deal in December AFTER I have another DEXA scan. Doc agreed. I was glad for that. No more worrying about this drug for 10 months! Hopefully having my Vit D level back in check for almost a year now and exercise will keep me from further bone loss. With any luck!
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Ugh sorry about your dental issues. That was my fear taking the shot. Also my MO prescribed Fosamex(sp) and it can cause jaw/dental problems. Didn’t do it either.
Diane
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I did the baseline DEXA when I finished tx. Osteopenia. Started Aramidex. 2 years later, another DEXA. OSTEOPOROSIS. Everyone piled on about fosomax, or Prolia. I had open TMJ surgery years ago, it wasn’t fun, but did the trick. I don’t want my jaws messed with again. Asked my dentist about ONJ, she said she’d never seen it. My PCP said it was “nasty”. So I refused the meds. Most recent DEXA last month showed my spine a little worse, hip a little better. All I take is 5000 D3 daily.
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I also had my first Dexa scan the same day I had the mammogram that started it all, at age 68. I have osteoporosis, ick. My MO explained it all pretty well, and how I'd need to go on Prolia with an AI. Since I had to have another major surgery first, and then radiation, it bought me some time. When we discussed it again, she said I'd have to be cleared by a dentist first. Well, I know I need a couple of implants, but due to some past issues, I need to find out if I'm allergic to any metals. I brought it up with my PCP, and she basically told me to forget it. (I'm shopping for a new doctor). Anyway, I told my MO that between all the surgeries and tests and radiation, my brain was too scrambled to cope with it. Right away, she said she'd put me on Tamoxifen instead and we could talk about it somewhere down the road. When I had my 6-month checkup with the BS, she mentioned that Tamoxifen helps strengthen bones. So I'm hoping my bones can hold steady, and possibly improve, without adding another drug.
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At my last 6 month check up in September 2018, oncologist brought up Zometa (infusion every 6 months for 2 years) to help with osteoporosis and decrease chance of mets - I was on AIs for 3 1/2 years and took Actonel while on AIs. When I stopped AIs stopped Actonel. My pcp at the time preferred me to hold off on bisphosphonates due to risk of spontaneous fractures. My pcp retired last year and my new pcp is young - she thinks if my onc recommended the Zometa it is worth a try. I need some dental work done so can't consider the Zometa till its done. I see my onc the middle of March - I'm sure he will bring up the Zometa again - not sure what I want to do - My next DEXA scan is in the fall, so might wait till then so see the results. Don't really want to be in the infusion room - too many memories of chemo - but don't want to make a decision based on not wanting to be in the infusion room!!! I walk daily which is good for the bones
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I have osteoporosis, and after one dose of Reclast which made me super ill, I don't take any bone building drugs. I also am sickened by Tamoxifen. The plan is currently to get me off an AI at the five year point and hope the bones hold up. I am heavily training, both lifting significant weight and high impact aerobic activities. The studies have shown relatively so-so results for less vigorous activity, and prior to diagnosis my least active time in my life I was still walking several miles a day, which appears to have done nothing to maintain my bone strength. I'm small and fair so I'm pretty much pre-programmed for bone loss. I did come hard off my bike last fall with no ill effects. Hopefully having good muscle mass will continue to keep me protected and all the training will slow or halt bone loss.
If you're concerned about the drugs and physically still relatively robust, vigorous training might be something to consider. The literature I found was somewhat mixed, but consensus seemed to be go big or go home. And it can be fun to be in the gray haired set and casually knock off a few push-ups or add wight to the already 45lb barbell. I'm still working on those dang pull-ups, but getting closer, still can't quite do it from a dead hang.
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it seems to be easier for some to decide whether or not to use any drugs for our bones. It was hard for me as well. I tend to get icky side effects.
Hysterectomy at 27 yr old set me up for bone loss early. 52 at dx letrezole and fosamax which gave me terrific jaw pain. 9 yrs later dx stage 4 and osteopenia. What convinced me to take Xgeva was that studies show it actually prevents cancer getting in the bones, not just prevent. (Or postpone) breaks. Now I'm curious how many got more bone mets anyways? Or did it hit the lungs liver or someplace else instead? Much later?
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In the mail yesterday, my insurance compnay shot down coverage for Prolia anyway. They think I'll be fine without it too!! LOL
Nice to know there are others out there not doing this treatment since we really don't know if it will do us any good, or just cause more problems!
Alice : you've been thru a lot more than I, but I'm right there with you trying to wrap our heads around all this stuff! I call it appointment fatigue.
gailmary: Sorry to hear. My sister (MBC) has been stable with the AI and Xgeva since 2015. I thought I was told that a reoccurrence usually happens in the 1st 5 yrs, true for some I guess. But, seems there are as many further out (9, 10, 15 yrs) as well. Very curious about that.
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Tamoxifen was better for me than Arimidex because Arimidex attacks the bones but I still got osteoporosis anyway. I was borderline for years. I can’t even consider a drug that might cause dental issues. I have enough of those.
Diane
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ctmbsikia, when my MO was telling me about the benefits and downsides of AIs vs. Tamoxifen, she mentioned that if Prolia is prescribed as part of the cancer treatment with an AI, the insurance covers it. She said if it's prescribed by the PCP, they won't cover it.
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The delineation between osteoporosis and osteopenia was an arbitrary decision (read the NPR transcript that is floating around here).
Osteoporosis is a real condition but at what level it becomes dangerous is not very well known (from what I am reading).
I have osteopenia and I am not taking anything. I refuse to take bone from my jaw to put back in my spine. Drugs have real side effects (how well we know!).
I've started to eat prunes; they build bones. I can't eat the quantity they recommend to build bone but anything I can eat, I try to --even if it simply holds me at the level I am at currently.
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I'm a Dental Hygienist and I can confirm that jaw necrosis does, in fact, occur with people on bisphosphonates. Fosamax was the first and most worrisome. That being said, I can also say that I never saw a patient that had that problem and I saw many patients taking bisphosphonates. My knowledge of the jaw necrosis is from hearing stories from an oral surgeon we worked with closely. What we ended up telling our patients and what is supported by the current stats on those drugs is, if you have osteoporosis and you are taking bisphosphonates, do not take more than 3 years. And I too, have heard what was stated by someone else on this thread that their effectiveness goes down after 3 years and the problems at that point, like bone fractures and necrosis, goes up at the 3 year point.
I hope this helps.
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Hi Wallycat
I have the same issue as you I have also been told I have osteopenia.
On Anastrozole for 3 months no problems Wonder what the future will hold.
But I have done a lot of reading on various sites on net and really have come to the conclusion that I don’t want to take either Prolia or Zomate for my bones.
I have asked Pharmacist , Dentist and they to skirt around the issues. Have yet to talk to Medical Oncology due to Covid-19 and them doing phone appointments . I just wish there was more support to say No to these drugs. Glad to be able to read this community site. I am going on the vitamin, diet (prunes etc) exercise route as well.
Be good to hear how everyone not doing these drugs are getting on.
My dear husband says I should stop read Dr Google but I guess they just don’t understand
All the best
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I was DX with osteoporosis after I was DX with breast cancer. My MO prescribed Arimidex Because I was post-menopausal but it is a drug that attacks the bones. She changed me to Tamoxifen after one year but the damage was already done.
Fast forward to now I have the stats for osteopenia so the meds I take are working. I take Boniva once a month, Vit D1 and 2 different calcium tablets every day.
Osteoporosis was brutal. While I still have some pain it is nothing compared to the pain with osteoporosis. It was excruciating esp at night.
I wouldn't take either of those drugs. My internist suggested Prolia but I've read too many negative things about it.
Diane
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Hi Marymc86,
I have never had a dexa scan so not sure where I stand. I will be getting my 2nd Zometa infusion next week. I had the first one six months ago. Is there a test to measure jaw bone density at the dentist or oral surgeon? I am worried about jaw necrosis
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I have osteopenia but have managed to keep it stable for years without medication by doing lots of weight bearing exercise, calcium (plus vitamin D), magnesium, and several servings of dairy a day. While I was on Arimidex (for 5 years) I also ate a serving of dried plums (prunes) every day as they actually build bones.
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Hey Diane- Are you saying that
things improved after your switch to
tamoxifin?
I have osteopaenia as well and am post
menopausal- i am one year out from
tamoxifin use and am always interested
in reading posts on women who are post
menopausal and on tamoxifin-
I still wonder why women like us are slways
offered aromatase inhibitors versus tamoxifen-
there are equally brutal side effects
that can happen with either-
like a game of “ would you rather “
Would yoy rather have debilitating bone
loss or a uterine bleeding omg- neither-I wish -
I am glad you have improved and would like
to know how you feel about being on tamoxifin
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I've had osteoporosis for 12 years, with Dexa scans as low as 3.9. I have never been on any meds ( I react to all of them). I just finished 5 years of Femara. My observation is that when you first go on an AI, bone density dips and then stabilizes. Same as at menopause, where there is a dip and then a more stable rate. No fractures, and I am careful. I do calcium, D and k, and tai chi.
I did fracture my spine a few years before I had osteoporosis (and no osteopoenia at that time either). I cannot lift much weight. I often wonder if that has protected me even though it causes some pain.
I really cannot believe doctors are still advocating for meds for osteopoenia.
Pick up a copy of Keith McCormick's book on natural treatments for bone loss, and for prevention. He has high credibility because he had a very low bone density himself, and did do some meds, then maintained naturally afterwards.
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Thank you everyone for your info. I am 7 years post surgery and 4 years post anastrozole. I am skeduled to see an endocrinologist for my diagnosed osteopenia on Jan. 19, 2024. I would love to see more recommendations on helpful books. I will look for McCormick's as previously posted.
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I had osteopenia for over ten years and just started Arimidex. My oncologist said to keep taking calcium and vitamin D and if it turns into osteoporosis, she'll put me on bone, what ever it is, medication. I told her no, I don't want another medication for a side effect from the first medication. So I am taking Arimidex (name brand) every other day for that reason and other potential side effects. My next bone density test is two years away. I started lifting hand weights, the elliptical, squats, and searching for a treadmill to keep walking in the winter months. I read somewhere that if medically required, the oncologist can order a bone density sooner.
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