Jun 13, 2013 11:22AM Momine wrote:
Nancy, thanks and good to know.
Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong
Posted on: May 24, 2013 02:52PM
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 31 - 60 (88 total)
Jun 13, 2013 11:22AM Momine wrote:
Nancy, thanks and good to know.
Jun 13, 2013 03:26PM MaryLW wrote:
I was diagnosed with bone mets in January. I had taken bisphosphonates off and on for several years due to osteopenia. When I needed to have a tooth extracted about two years ago, I found out about ONJ! I had to stop the bisphosphonates and wait (in pain) for 8 months before I could have the dental work. Now with the bone mets, my MO is really pushing infusions of bisphosphonates or similar drugs which are also associated with ONJ. He is dismissive about the ONJ threat, but then again, it's not his jaw that's in danger of rotting! Anyway, I am not going to take those drugs. After reading your posts, I'm thinking maybe I could take Tamoxifen instead. I took it for about 2 years, from '97 to '99, and then stopped because of the SE's. I would be willing to try again, though. I'm currently taking Faslodex injections, which also block estrogen. Does anybody know if you can take Faslodex and Tamoxifen both? Do you think my MO will refuse to treat me if I won't take the bisphosphonates?
Jun 13, 2013 03:40PM NancyHB wrote:
Mary, I'm so sorry about your recent progression. You ask the same question I fearly ask myself every day - Will my MO refuse to treat me when he finds out I'm not taking Tamoxifen anymore? I believe in my head that our doctors are professionals who guide our treatment but leave the choice up to us; I worry in my heart that that's not true.
If your MO refuses to treat you, I wouldn't hesitate to hustle my butt to another MO. Ultimately, these treatment choices are OUR choice. Our doctors can recommend, encourage, perhaps even cajole us into doing what they believe is best - but they aren't US and are not living with the short- and long-term SEs and outcomes.
From reading other posts I am of the understanding that Tamoxifen is used in treating some types of metastatic disease, so perhaps it would be an option for you? I hope someone with solid knowledge comes along to answer your question.
Good luck with your MO - I hope he supports your decisions and encourages your choices.
Jun 13, 2013 04:25PM MaryLW wrote:
Nancy, thanks for the encouragement. I think what I'm really afraid of is that if my MO won't treat me anymore, maybe nobody else will either. I really think, though, that not all oncologists prescribe bisphosphonates. At least, I hope not! I'll see the MO in about 2 weeks. I'm willing to take almost any other treatment that he recommends, other than the ones associated with ONJ.
Jun 14, 2013 07:27AM Momine wrote:
Mary, I can't help with your dilemma directly.
However, I am seen for follow-up by two docs, and onc and my breast surgeon. The surgeon is the lead, which is a bit unusual, but it works for now. Anyway, point being that I have osteopenia on my spine, and I had it even before starting femara. My onc was all fired up back in January to start me on bisphosphonates or prolia, even though it was nowhere near actual osteoporosis at that point. The other guy was of the opinion that no way should I start the drugs unless I had actual osteoporosis, and even then, it would be something to discuss, not a given. Then I went to see an ortho, because my back really is a total mess, and he also had no intention of putting me on the drugs.
My point here being that it seems to be something that even docs have trouble agreeing on.
Jun 14, 2013 11:53AM MaryLW wrote:
Thanks, Momine. I know there's disagreement about whether bisphosphonates even help. They make the bones more dense, but also more brittle. It seems though that all the women in my situation (bone mets) are taking them.
Jun 14, 2013 12:14PM Momine wrote:
MaryLW, when I brought up the dubious benefits to my doc, he waved me off. He is convinced that they are good drugs. I really dunno, and I plan to consult with an osteoporosis specialist to get complete info.
Jun 14, 2013 12:47PM dogsandjogs wrote:
My internist doesn't believe they cause jaw necrosis or hip fractures. But he also said you probably shouldn't take them more than 3 years because they are not as effective after that time.
He got annoyed when I pointed out the statistics I had seen on the Internet. He said he is going to start telling his patients if they look up medical stuff on the Internet he won't be their doctor anymore. He is beginning to act weird, spouting off all his theories, a lot of which have nothing to do with my situation so I'm looking for another internist.
It is too bad because when I first starting seeing him he was such a good listener, had an open mind, was relaxed and funny. Now he is hyper, doesn't listen to any opinions except his own and says he can't afford to give patients more than a 10 minute visit! So something is going on with him. Burnout I suppose---
Jun 14, 2013 02:17PM MaryLW wrote:
Dogsandjogs, your internist sounds like a real jerk. I'd definitely find someone else. I haven't disagreed with my MO yet, so when I do, I may find out he's a real jerk, too!
Jul 12, 2013 05:50AM Member_of_the_Club wrote:
I went from great bone density to osteopenia after a few years on arimidex. I exercise a lot -- I'm a runner and do weight training -- and there really wasn't anything I could add to my regimen. I also have other risk factors for bone loss -- family history, small stature, pale skin. My onc put me on prolia because he said otherwise I would develop osteoparosis, in my case it seemed pretty inevitable and because I'm so active its something I want to avoid. My onc said prolia has a lower side effect profile than the other biophosphonates. So far no problem.
Jul 13, 2013 11:13AM beachwalker54 wrote:
I am very concerned about my bones too. I had a parathryoid removed 6 years ago which was enlarged and benign and leached lots of calcium from my bones. My gastroenterologist found this, not my internist. (I have chron's disease too, which luckily has not been too bad for the past 35 years or so.) therefore, I already have both osteopenia and osteoporosis in various bones. For 5 years i was on fosomax until I saw an ad on tv saying that after 5 years on that, woman's femurs (leg bone, right?) were breaking more. Great!! So my doc. said to stop taking it. that being said, I am now on aromasin and my MO said my last dexascan showed both osteop. and osteoperosis but that it wasn't too bad. I am also not taking any thing for bone density and am wondering if my bones have to actually break to be in BAD shape? But what's the alternative? I am afraid not to take the AL's so maybe all I need is to not walk anymore??? It is scary, and I will be quite afraid to have next year's dexascan.
I have read about women getting shots of something to help with bone density but don't know anything about it yet.
At 59 years old, I can't imagine what my bones will be like in only a couple of years or more! Sure wish there were better and more alternatives for us out there! let's hope there will be.
thanks everyone for letting me vent!
Jul 13, 2013 01:18PM Momine wrote:
beachwalker, I hear you. Tehre doesn't seem to be any good solution. May I ask how parathyroid is found/DXed?
Jul 13, 2013 02:05PM dogsandjogs wrote:
I had a parathyroidectomy also. Which is probably what caused my osteoporosis as well. I quit Fosamax after 3 years due to the fact that I had had a hip fracture and was beginning to get jaw pain.
I did not want to take Aromasin due to possible further damage, but did give it try for a few months. The osteoporosis got worse. Since I had many other SEz from Aromasin; eg constant diarrrhea, severe bone and muscle pain (some days I literally could not walk) I quit the drug.
The parathyroid was diagnosed thru high calcium level on a blood test, a 24 hour urine test and then a scan of the parathyroid gland. Prior to the diagnosis I had no idea I was losing calcium, but had had some bone ache. Thought it was just old age!
Jul 14, 2013 01:15PM beachwalker54 wrote:
Just like dogandjogs, (sorry to hear that you also had the parathyroid problem), mine was found from high calcium levels on my bloodwork, then nuclear imaging which found the thing to be enlarged, then it was surgically removed. That's where my bone loss began too, I'm sure.
I seem to be super tired,a weird kind of all over body tired including my head from the aromasin and the rads or both. That is my biggest concern right now. I can't get through the day without feeling just beat and by 2:00 I need to sleep or rest. Can't stand it and just hope it's only a SE. (completed rads 4 weeks ago and have been on Al for 9 weeks).
I walked only 1 mile this morning and that was all I could do. Hope to walk more later when it cools down but 3 miles at once was easy until recently. hoping that the walks will help the old bones!
have a sunny day!
Jul 14, 2013 01:32PM dogsandjogs wrote:
Beachwalker: No, I'm not an any hormonals. I saw a site which had studies done on women over 70 which made me feel confident to quit.
Jul 14, 2013 03:17PM Momine wrote:
Dogs and Beach, thanks for your responses. When you say high calcium, any idea how high? Are we talking high normal or out of the ballpark sort of high?
Jul 15, 2013 08:38AM dogsandjogs wrote:
Mine was out of the normal range. Can't remember how far, but enough to concern the doctor.
Jul 15, 2013 08:45AM Momine wrote:
Dogs, thanks for the info, good to know.
Jul 15, 2013 09:11AM dogsandjogs wrote:
I am wondering now how many years was it that I had high calcium levels? I only got bloodwork done infrequently after my first cancer diagnosis and mastectomy so there is no way of knowing. For sure, during the time the parathyroid tumor grew I was leeching calcium (sp?) from the bones and that is what caused the osteoporosis. As the surgeon explained: "The parathyroid gland goes "wacko" and thinks the bones have to get rid of the calcium. Without a tumor the 4 glands do their proper job of regulating calcium.
Jul 15, 2013 09:43AM edwards750 wrote:
I do have osteoporsis and I started out on Arimidex which you all know robs your bones of calcium. I was taking Atelvia and calcium with D3 until the new year kicked in and no more 100% insurance coverage. It was then I found out how expensive Atelvia was...like $120 a month. NO way. My ONC probably got tired of me complaining how expensive the drugs were - she sure can afford them -and switched me to Tamoxifen. I had zero issues with Arimidex. Tamoxifen is another story at least with hot flashes and weight gain - not a lot but still. Anyway I am sticking with it until the 5 year mark which is a few years away and then will see. My Ob-Gyn said I need to watch the bones issues because if I suffered a fracture I wouldnt come back from it so I stepped up the calcium with foods with calcium and exercise a lot more. I still take the drugs as well. Anyway I had a bone density test a few weeks ago and my levels are up so the nurse said keep doing what I was doing because it was working. My mother in law has the hump as does my neighbor's husband...we dont want that to be sure. Diane
Jul 15, 2013 10:46AM dogsandjogs wrote:
Yep, I have the dowager's hump. Not pretty and it also causes my inability to stand straight so the stomach sags. I have been doing some weight training which won't cure anything, but will make the surrounding muscles stronger so at least I won't look so slumped over.
Jul 15, 2013 02:10PM luvmygoats wrote:
This discussion just prompted me to check my pharmacy benefits. My MO has mentioned both Fosamax and Prolia. Due to have repeat bone density in January. Have been osteopenic for a while but density when I started Femara was unchanged from the year b4 and not much change in 2 years. My gyne had me on Evista prior to BC for which I am ever so thankful. I also have my gyne monitor density and get more info from him than MO about it. Prolia for me is major preapproval, Tier 3, failure of lower tier drugs, not happening.
Edwards, I had not heard of Atelvia. Any particular reason for it rather than alendronate (Fosamax) or ibandronate (Boniva)? It along with Actonel (I think same drug) are both for me Tier 2, "formulary brand name".
I'm just getting ducks in a row for January. I have started a gentle home TV exercise with light weights. I am active as I have a goat herd and do get weight lifting with hay and water buckets. I feel I'm getting a little dowager's hump but my posture is not the greatest. Too much time sitting on 'puter. Also taking my Ca/Vit D and added extra Vit D3 2x/week. I live too far out to make use of gym and know myself would not go so what I can do at home will have to do. IF (and yes a big if) I would get hiney out of house my church does have indoor gym for walking every day but makeup - still a girl, get dressed, get out. Too many excuses.
Jul 15, 2013 02:41PM dogsandjogs wrote:
Nobody dresses up to go to the gym; or wear make-up either. Go as you are-----
Jul 15, 2013 02:42PM dogsandjogs wrote:
I would love to have a place so I could have farm animals.
Jul 16, 2013 05:39PM Member_of_the_Club wrote:
The best exercise in the world is walking. You can do it anytime (its light out), it has a low injury profile, its got all sorts of health benefits and I think its pretty enjoyable. I'm a runner, so Walking is not my primary form of exercise, but I think anyone who is reluctant to exercise should consider it.
Jul 24, 2013 10:39AM cp418 wrote:
Hi - I'm adding this link here if anyone is interested as it pertains to a drug for Osteoporosis available in Europe. The frustrating thing is it is available from Pfizer a USA based Pharma company but it is not registered in the USA for patients. I hope you find the recent research and news helpful and read the posts from Dr Wardells who is one of the primary researchers for BZA.
I plan to get a petition started to address Pfizer to make this medication available for patients in North America.
Mar 7, 2018 08:35PM MamaOz wrote:
momine, we have chatted on recent other threads I see these are from 2013 sonim wondering did you ever take a bisphosfimate or anything? And if not how are you now? If i recall you take or took arimidex as well
Mar 10, 2018 03:48PM aterry wrote:
MamaOz, thanks for bumping this thread. The PA in my oncology practice suggested that I start prolia for osteopenia in hip and osteoporosis in the spine. I haven't checked with my dentist, yet, but I'm hesitant. It seems I'm being asked to choose between my spine and my jaw. My mother-in-law had necrosis of the jaw following use of Fosamax and that lead to bone cancer, so I'm leery of these drugs.
Mar 11, 2018 01:36AM - edited Mar 11, 2018 01:37AM by Pessa
More importantly, what does your physician, who is better educate and trained,recommend,