May 24, 2013 12:55PM - edited May 24, 2013 12:56PM by ByFaith
Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong
Posted on: May 24, 2013 12:52PM
My first baseline DEXA scan was normal for my age. My first DEXA one year after taking Femara, then switching to Arimidex, showed -12% change in bone density in two areas (now osteopenia) and -16% change in one femoral neck (T-score 2.4, just one tenth away from osteporosis). I go to a very prestigious hospital and have a highly experienced oncologist. For my routine followups I see my oncologist's P.A.
I've been told by the P.A. that their opinion is that research does not indicate that taking drugs like Boniva or Prolia help when one has osteopenia. I've been told to wait until my next DEXA scan in 6 months and they will treat when I am officially diagnosed with osteoporosis. (It's agreed I likely will be at that stage due to my 1-year decline and one T-score being 2.4 versus official osteoporosis as 2.5.) In the meantime, they continue to recommend the proper vitamin supplementation, together with exercise and weightbearing.
My physicians know it's extremely difficult for me to exercise due to longstanding chronic and disabling refractory migraines and near-daily migraine-associated pain. I barely exercised my first year and now I have the bad bone density scores. I've been told to start with light exercise and weightbearing due to my previous lack of exercise, so walking, swimming and/or yoga has been recommended. I'll probably force myself to walk on the treadmill even if I'm unwell; there's nothing else I can do but force myself at this point. Swimming is easier and I could use that to help condition myself to walk easier, but overall it's a matter of forcing myself to exercise while in migraine pain, as the migraine abortive medications are not very effective in relieving my migraine symptoms.
I'm concerned that I had such a steep decline on my first DEXA since starting Arimidex and am so near to osteoporosis in one area and no medication is recommended. Again, the oncologist feels the research does not support starting osteopenic patients on medication for osteoporosis. I notice, however, on this thread there are several women on Prolia or biphosphanates with a diagnosis of osteopenia.
Is there anyone like myself who has osteopenia or near osteoporosis who are NOT on a medication to fend off or repair bone density decline? Since I'm blessed to be seen at such a prestigious hospital, but want to be proactive with this. I have two more years on Arimidex. I'd be interested in your opinions. Thank you.
Posts 1 - 30 (88 total)
May 24, 2013 12:55PM - edited May 24, 2013 12:56PM by ByFaith
May 24, 2013 01:06PM sheila888 wrote:
Hi Dawnsm..... I just got my results of my Bone Density test
T Score is -1.4 another one is -1.5
I had Osteopinia for long time even before I was taking Femara
So far I'm not on any medication
I just take Caltrate with Vitamin3 twice a day.....
May 25, 2013 10:48AM - edited May 25, 2013 11:00AM by slousha
I’m on AI’s for 5 years and my BD at beginning with was -2.8 at lumbar spine, -1.2 at hip, after 2 1/2 years without bone medicines (at my risk), only with D3, calcium in food, exercises, walking every day, sunbathes and swimming, at lumbar spine remains the same and the hip was OK.
Have had prescription for Actimel, was afraid of burning sensation in the esophagus and didn’t take it. My Onco wanted to put me on Prolia, after researching a lot, I postponed it excusing of dental issues. For once! I will pass by 3 1/2 years in September. I’ll have new testing and if BD worsened I’ll go on Prolia.
May 28, 2013 09:35PM ByFaith wrote:
Sheila and Usha ... Thanks for your input. I'll do everything I can until my next DEXA scan to ensure I'm protecting my bone health.
Are there dental issues associated with Prolia? Any other serious side effects?
May 29, 2013 02:20PM - edited May 29, 2013 02:22PM by ICanDoThis
I don't know - maybe because I was Grade 1, but my doc didn't fight me when I insisted on going on tamoxifen, which builds your bones.
The difference between generic tamox and an AI plus Prolia was about $5000 every 6 months - for a 1% difference in a chance of recurrence.
May 29, 2013 09:33PM 1openheart wrote:
I just had my yearly bone density scan yesterday. I have a hx. of osteopenia due to prednisone use for the treatment of my asthma, but have had normal densities for several years. In fact, I had much improvement in my bone density while I was on my bioidentical hormone pellets for two years prior to my bc diagnosis. I did not have good news yesterday. My hip density was down by over 9%, after going down 2.5 % last year. I am now within the osteopenic range in my hip again. My spine is still in the normal range, but went down almost 5% this year. I currently take 2 Citracal a day, plus some additional calcium from a multi vitamen. I also take 3000 IU of D3. My doc said that I was not a candidate for bone medication at this time. It is not low enough. She wants me to take an additional CitraCal (for a total of 3 a day), increase my dietary calcium intake and really increase the weight bearing exercise. I am on Tamoxifen, which is suppose to help with the bone density.
I'm bummed, but I guess this is a big wake up call to get serious with the exercise. She said that my yoga was not enough.
May 30, 2013 01:33PM Member_of_the_Club wrote:
I'm not the person you want to hear from because I am on prolia, but my onc's opinion was that he wanted to prevent me from developing osteoparosis. I do exercise quite a bit but I have all sorts of other risk factors -- big family history of bone loss, small size, pale skin -- so bone loss is essentially inevitable for me.
I would question a recommendation from a PA and speak to the oncologist himself. I have found that PAs can be very attentive and caring but when it comes to a decision like this, which can be nuanced (such as your difficulty exercising and the rapidity of your bone loss) its best to talk to the actual doctor.
Jun 5, 2013 07:01AM - edited Jun 6, 2013 05:36AM by Golden01
I have osteopenia and the MO's plan is for me to be on Tamoxifen for 2 1/2 years and then switch to an AI. My Internist indicates we'll take a look at me going on a bone building medication about six months before I start the AI, depending on what my next bone denisty test shows (will start sooner if I'm not holding my own with good dairy intake, vitamin D, and exercise). Interestingly, my Vitamin D levels fell in spite of taking 2,000 IU a day. I've upped it to 4,000 IU daily and am working at getting out in the bright sun for at least a little bit most days of the week.
Jun 7, 2013 08:50AM NatsFan wrote:
Went from plus T values before b/c to osteopenia after 2 years of Femara. My onc got me on Caltrate and Vit D, plus lots and lots of exercise, including weight bearing. When I had my next DEXA two years later, the values had stabilized. Finishing my 5 years of Femara this month, so I'm hoping that at worst my density will remain stable, and at best I can actually re-gain some density.
Jun 7, 2013 09:11AM SpecialK wrote:
dawnsm - I know you asked for resposes from those who are not on a bonebuilding drug, but then you had a question regarding Prolia. I was osteopenic, but stable, long before I was diagnosed with BC. I was unable to take bisphosphanates (Actonel and Boniva) orally due to a previous surgery for reflux in '95 - I did get the esophageal burning from those drugs. My health care comes through the military and they do not administer Reclast, the once a year bisphosphanate by IV. I did have a BD scan the same day as my suspicious imaging so I did have a good pre-treatment baseline for osteopenia. Afetr chemo and 6 months of Femara I had demonstrated loss but still remained in the osteopenic range. My MO believes in the preventive and protective qualities of Prolia, although it can take a couple of years to reverse any damage. I have had 3 injections spaced 6 months apart. Prolia is a monoclonal antibody so it is different from the bisphosphanates but it does have the same warning for osteonecrosis of the jaw. This is a rare side effect and usually occurs in someone who has pre-existing issues with dental work like implants or jaw issues, or need very invasive dental work done. I was advised to have any dental work done at the half-way point between injections. I have had no other side effects at all from this injection, absolutely none. I have not had a bone density since just prior to starting so I don't know yet if it is helping. I also take raw calcium and vitamin D daily, and I do exercise. Wishing you the best!
Jun 9, 2013 03:40AM Momine wrote:
Yep, I have problems on my spine and so far I have not taken meds. This week's dexa has my spine at -2.3.
However, I have managed to add bone to my hip with exercise, so I think it is well worth it to try some sort of exercise.
To strengthen the spine, I am now trying to learn these yoga poses:
Jun 9, 2013 07:24AM Golden01 wrote:
Thanks for the yoga poses! Here's a link to a nice chart that is helping me move it up a notch. Broke a bone in foot last fall and got off track with my physical activity but I'm back to walking and ready to more on to hiking and more again. http://cals.arizona.edu/maricopa/fcs/bb/bbchart.htm
Jun 9, 2013 08:15AM dogsandjogs wrote:
I actually have pretty severe osteoporosis, not osteopenia, but I quit Fosamax after 3 years due to difficulty with swallowing and then jaw pain. I have not tried anything else, but do take calcium with D and do a lot of walking and jogging. My internist doesn't seem that concerned so I really don't want to try another drug. I also have afibs, which got worse during the taking of Fosamax.
Jun 9, 2013 08:37AM Momine wrote:
Dogs, thanks for posting that. I am very ambivalent about the drugs. As far as I can understand, people still have spontaneous fractures and stuff, even ON the drugs, and it is thought that the drugs may make the bones brittle. Since my femur/hip is fine (100% for my age), I am really not interested in potentially messing up healthy bones. But I can't get a straight answer out of the docs about this. Probably because they don't really know.
Jun 9, 2013 08:42AM dogsandjogs wrote:
Yes, I did break my hip in 2009, while on Fosamax. So who knows if the Fosamax contributed? Since that time I have also fractured 3 vertebrae and an arm ---could be from the osteoporosis, but taking the Fosamax probably had an impact (pun intended!)
Jun 9, 2013 09:00AM Momine wrote:
Dogs, that sounds really bad. I am so sorry.
Jun 9, 2013 10:01AM peggy_j wrote:
I have a rare bone condition so I'm at high risk for osteoporosis and I cannot take any of those bone building meds. Have you considered switching to tamox? If you are post-meno, it should build your bones. I had a consultation with the head of an osteoporosis clinic; I think food and exercise can help but may not be enough to counter the impact of bone depleting drugs.
Jun 9, 2013 01:16PM dogsandjogs wrote:
It's ok; Luckily I heal pretty well---
Jun 10, 2013 12:43AM Momine wrote:
Dogs, sounds like you heal amazingly well, which is great.
Jun 11, 2013 09:14AM Momine wrote:
Icando/Sue, I just found an old post of yours about DEXA scans being inaccurate if you have scoliosis. I am having an issue with bad DEXA of my spine, which has severe scoliosis and modic changes, and I would be curious if you have any more info on this.
Jun 11, 2013 10:02AM dogsandjogs wrote:
I haven't heard this. Would be interested as I also have scoliosis. Last test showed my bones were 15 years older than my age. Since I'm 77 that is mind-boggling.
Jun 11, 2013 10:05AM dogsandjogs wrote:
I think I need to see an ortho back specialist. Maybe could give me some exercises to do. I also have curvature of the spine and a "dowager's" hump. This means I can't lie down on anything order than a mastress without discomfort (or a pillow) my internist says I don't need surgery (it is probably too late, but he doesn't know everything, right?
Jun 11, 2013 11:11PM dlb823 wrote:
In 2009, my first DexaScan revealed osteopenia (-2.2). A followup DexaScan two years later in 2011 after a nasty fall where I broke my jaw in 2 places, showed that I had dropped to -2.4. I absolutely did not want to take a biophosphate, and went to a naturopathic doctor for the problem, along with a concern about general bc recurrence prevention. She told me she felt certain that if I would give her 18 mos, she could reverse my osteopenia. A couple of weeks ago I had another DexaScan and am now at -1.1, an astounding improvement.
In addition to some basic, weight bearing gym work, I've done the following: Switched to a calcium citrite supplement with a 1:1 magnesium ratio. Added a product called Osteo Mins A.M. that facilitates calcium absorption. Added 5,000 IUs of D3 (even though my D tested very high prior to any supplementation, probably b'cuz I live in sunny CA). I take other hormones based on some indepth testing and believe the better balance probably figures into the equation. I've also given up wheat after learning I'm highly sensitive to it. I don't know how much the two last changes have affected the osteopenia, but they've certainly improved my overall health, and I suspect they've played a role in the osteopenia improvement as well. Deanna
Jun 12, 2013 12:54AM Momine wrote:
Deanna, thanks so much for that post. I am increasingly leaning towards trying non-bisphosphonate methods. Apart from the SEs of those drugs, I am just not convinced that they do much good in the long term.
But you say you take hormones? That I can't do with my situation. What kind of hormones do you take?
Jun 12, 2013 07:05AM dlb823 wrote:
Momine, I'm on NaturThroid (a natural thyroid supplement), DHEA, and just a tiny bit of testosterone -- all RX'd after extensive blood and urine testing. My ND feels I would also benefit from a bit of estrogen (she's a naturopathic oncologist and understands hormones better than my onc), but so far I can't bring myself to do that, even though I've seen the charts that show it would improve my overall hormone balance. Deanna
Jun 12, 2013 07:46AM Momine wrote:
Deanna, thanks for the info. That is interesting.
I am very grateful for all the info shared here, since I have to see the docs this week and I know that at least one of them will be pushing the bisphosphonates. From all I have read, I am really not convinced that those drugs are even all that helpful. For now, I am not interested in going that route.
Jun 12, 2013 02:16PM - edited Jun 12, 2013 02:17PM by Heidihill
One of the questions I had prior to receiving Zometa for bone mets was how it would affect my scoliosis. I was told it would help. I think Zometa combined with weight-bearing and resistance exercise, vitamin d, calcium, magnesium and vitamin k reversed the bone degradation. I was osteopenic after a baseline DEXA at 40. At 50 I was diagnosed with bone mets. So it's safe to say, and I certainly did feel, that my bones were pretty weak then (lacking a DEXA scan pre-treatment). Two years ago my DEXA showed above average results despite being on Femara. Now I'm on Tamoxifen so I can relax a bit.
I think it is possible to go the all-natural route - hard but possible - and I should have done it at 40 rather than after a mets diagnosis. Live and learn.
Jun 12, 2013 03:49PM - edited Jun 12, 2013 03:58PM by NancyHB
I had a bone scan before starting chemo and all looked really good. Six months later I had osteopenia in my neck and upper spine. I started Tamoxifen after chemo ended, in part because of the bone-building SEs, but quit because of the "other" debilitating SEs. Tried Aromasin for two months...then Tami for another three months...now, nothing. Done with 'em all. My MO strongly discourages biophosphonates due to the incidence of jaw necrosis. I run and try to work out at least 3 times a week, plus 2,000 units of Vit D daily (my D was really low for a while). So no, I'm not taking anything for it. Seeing my MO in 10 days for my 3-mo visit - wondering if he'll order any kind of scans to see where things are at.
(just as a funny aside...every time I type the word "osteopenia" it comes out "osteopenis." My chemo-brain wanders around when left unattended for short periods of time...)
Jun 13, 2013 12:34AM Momine wrote:
Nancy, if your MO doesn't like bisphosphonates, what does he suggest?
Jun 13, 2013 02:56AM NancyHB wrote:
Momine, he suggests biophosphonates only in "serious" situations - osteoporosis as it gets worse. Instead, he'd rather I exercise and (of course) take Tamoxifen. He doesn't yet know that I've stopped Tami for good now, but he'll know in a couple of weeks when I visit him again.