Feb 22, 2013 09:48PM BilateralBeauties wrote:
I'm in same boat, but do not have good guidance either. I hear you.
Talk with others about bone density, osteopenia and osteoporosis, and ways to keep your bones strong
Posted on: Feb 22, 2013 09:31PM
I've been away from these boards for a while and didn't even know there's now a bone loss section. Just in time for me, alas. My last scan showed osteopenia. This is no surprise as I have every risk factor: I've been on Arimidex for three years following five on tamoxifen, I have a family history of broken hips, I am small and very pale. The osteopenia is in my back, not my hips, probably because I'm a serious runner. I do some weight training but I clearly need to do more. Also, I'm 50 years old.
I'm just not sure what to do now. My sense is that they don't prescribe the meds until you reach full blown osteoparosis. I take a multi-vitamin, but maybe I should add calcium? How much?
I'm short, so I really don't want to lose height any time soon. Also, I don't want to develop the kind of orthopedic problems what would prevent me from running. But I also don't want to take on medication side effects before necessary.
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Feb 22, 2013 09:48PM BilateralBeauties wrote:
I'm in same boat, but do not have good guidance either. I hear you.
Feb 22, 2013 10:40PM wenweb wrote:
Member It sounds like you are off hormone therapy now. When I was on Arimidex and had noted bone loss, my onc wanted me to have IV bisphosphonates and insurance would have covered it. You might check because you may automatically qualify due to your history.
Feb 23, 2013 12:13AM SpecialK wrote:
I take 1500mg of raw calcium, 4000iu of Vitamin D, and get a Prolia injection every six months. I was osteopenic prior to chemo and Femara/Arimidex and had demonstrated loss, but remained osteopenic not osteoporotic. Prolia is a monoclonal antibody drug, not a bisphosphanate, and I can't take the drug orally due to a previous GI surgery for reflux. Here is a link to the calcium I take - I take raw calcium as it is thought to be easier on the joint pain.
Feb 23, 2013 01:24AM wenweb wrote:
Then you should automatically qualify.
Feb 23, 2013 01:39AM voraciousreader wrote:
I had 6 IV's of Zometa over the last three years while on Tamoxifen. The first two years I had ovarian suppression, so they were concerned about bone loss and fractures. I have quite an orthopedic history! In fact, I broke my foot last winter! My doctors are CONVINCED my fracture would have been worse had I not had the Zometa and worn my Mephisto sandals. I am NOT convinced. I broke plenty of body parts BEFORE I took Zometa and I am still havings fractures! Yikes!
Feb 23, 2013 05:12AM Soteria205 wrote:
Calcium...1200 mg per day, but taken 600 2X daily, and you need to take vitamin D with it so it can be absorbed properly.
Feb 23, 2013 12:30PM doxie wrote:
Those of us on the aromatase inhibitors like arimidex who are osteopenic are more likely to slip into osteoporosis on these drugs than if we weren't on them. The very low estrogen environment they put our bodies in can cause significant bone loss for some women. The DEXA scans are helpful in teasing out whether you are losing bone or not, and how quickly.
Feb 23, 2013 12:58PM wenweb wrote:
member Sorry I wasn't more clear on what you qualify for. I believe (at least it was true in my case), that your insurance company should cover a bisphosphonate drug (probably in IV form) due to the fact that a medication you are taking is expediting bone loss. It was my onc who wanted me to have the infusions.
Feb 23, 2013 02:55PM Member_of_the_Club wrote:
Oy, I guess I should discuss this with my onc, who had been the one ordering the DEXA scans. I figured he'd be the one to contact me if he wanted any changes. I'm not eager to go on any new meds but I really trust his advice so I'll see what he says.
Feb 23, 2013 06:37PM ginger2345 wrote:
The non-AI woman with osteopenia/fam hx of osteoporosis would be put on Vit D and Calcium. How much would be suggested by your doc. With the addition of the bone thinning AI, the doc might suggest a bisphosphonate. Bisphosphonates come with their own side effects--ya, oh, great!- so I would suggest you make an appt with you onc to thoroughly discuss the right treatment for you.
You'd think if osteopenia is a new dx for you that the onc would call, but don't slip thru the crack, make an appt to discuss.
Feb 25, 2013 12:50AM Member_of_the_Club wrote:
Oddly, I got a reminder about my appointment this week for my zoladex shot (I chose not to have my ovaries removed so I'm in chemical menopause) that included an appointment with my onc that I hadn't previously made. So maybe he decided to see me while I'm there anyway and someone forgot to tell me.
I feel really good right now and am not eager to take on side effects. Like everything else, I suppose its a cost-benefit analysis.
Feb 25, 2013 01:21AM ginger2345 wrote:
There aren't too many down sides to the right amount of calcium and Vit D, but the bisphosphonates are another matter. There, the risk/benefit ratio is more of a big deal. I work for a physician and I see so many women who have a fracture or a compression fracture and that truly can be a life limiting event. I' m on an AI, generic fosamax, calcium and Vit D. (BUt then I've never been a milk drinker.) If you've got a lot of calcium in your diet, you might not be missing calcium, but unless we live a lot closer to the equator, chances are we don't get enough Vit D. Glad you've got that doc appt.
Feb 26, 2013 11:46PM Member_of_the_Club wrote:
So it turns out I don't have an appointment with my onc, its just an appointment for blood work. And he hasn't returned my emails, which is unusual for him. I've only sent him a few over the years, but he was always responsive. So . . . I think I'll him before I head down to the cancer center tomorrow and try to see if I can shake him loose for a few minutes. He's a lovely man and will spend as much time with patients as necessary, which means he's ALWAYS running behind. Its like I have to set aside the whole morning for a short appointment. But I digress . .
Mar 5, 2013 03:30AM Member_of_the_Club wrote:
OK, I finally caught up with a nurse who spoke with the onc and his recommendation is to hold off on meds but retest in a year (as opposed to every 18 months, we've been doing). I can't remember if I mentioned the osteopenia is only in my spine -- my hips are fine. I guess I'm comfortable with this but I have started taking calcium,Vit d -- before I just took a multivitamin.
Mar 6, 2013 04:24AM - edited Mar 6, 2013 04:25AM by AnnieLane
I have osteopenia in my hips and have been taking weekly fosamax orally for about a year. I am 57, peri-menopausal, and about to start chemo. My MO says there's some prelimary evidence that biophosphates may help prevent breast cancer from coming back in the bones later.
Mar 23, 2013 03:13AM - edited Mar 23, 2013 03:14AM by chelseasanfran
I lost 9.2 % bone density in less than a year on Aromasin. My MO rec'd Reclast the 1X q year IV biophosphate, but there is the really bad side effect of jaw necrosis and they don't really know the risk of this for women with cancer taking it to stop/slow bone loss. Supposedly, it's lower with the once a year than monthly, but noone knows.
Because of this serious and unknown risk, Dr. Keith Block, who is my nutritional advisor, recommended that I try the Calcitonin salmon nasal spray first, stating he's seen 4-5% increases in bone density in women taking it. It does have serious side effects, but nothing quite as severe (to me) as the Reclast, so I've started that. I have had what I believe some side effects from it - increased depression/low mood, mild nasal congestion and what seems like some hair loss (a rare side effect). This is after my hair had grown back much healthier and slightly thicker after chemo (3/2/12 last treatment with Cytoxan and Taxotere) than prior to my diagnosis in Sept 2011.
I'll be having a repeat bone density scan in a few months and will let you know the result. I've included a short excerpt from on this issue from the American Dental Association. We should remember though what all the OBGYNS told us about needing to take HRT to prevent osteoporosis, then telling us all to stop b/c it (the Prempro I was on with estrogen and progesterone) when the Women's Health Initiative showed it caused breast cancer!
Statement by the ADA; Oral Surgery Literature Reiterates Prevalence is Low
Recently, the American Dental Association (ADA) updated information for the dental patient relative to bisphosphonate medications and the association with development of osteonecrosis of the jaw (ONJ). This one page informational statement, entitled "For the Dental Patient" - "Osteoporosis medications and oral health" can be accessed at http://jada.ada.org/cgi/content/full/140/6/812. ADA members may download the page and nonmembers may use the "guest" function and download the page for a small fee. According to the ADA, the page may be copied as a handout for patients without first obtaining reprint permission from the ADA Publishing Division.
The informational statement stresses the importance of the bisphosphonate drugs in the treatment of osteoporosis. According to the statement, these drugs help reduce the chance of bone fracture by decreasing bone loss and increasing bone density. It reminds the patient that the drugs have been associated with osteonecrosis of the jaw, a rare but serious condition. This syndrome is diagnosed in a patient who has an area of exposed jaw bone that persists for more than 8 weeks, has no history of receiving radiation therapy to the head and neck, and is taking, or has taken, a bisphosphonate. The statement notes that of the people diagnosed with bisphosphonate-associated osteonecrosis of the jaw bone, 94% are cancer patients receiving repeated high doses of intravenous bisphosphonates; the other 6% have received oral bisphosphonates.
The ADA encourages the patient to alert their dentist if they are taking a bisphosphonate medication and notes that medical and dental practitioners and researchers continue to research how to prevent and how to treat bisphosphonate-associated osteonecrosis of the jaw bone. The informational statement stresses that the benefits of bisphosphonates, in decreasing the risk of bone loss and bone fractures, outweigh the low risk of developing osteonecrosis of the jaw. It adds that, at this time, there is no known prevention for osteonecrosis of the jaw in bisphosphonates users and that regular dental visits and the practice of good oral hygiene may be the best ways of reducing the risk.
Mar 23, 2013 07:18AM - edited Mar 23, 2013 07:23AM by Kathy044
Oh I hear you, here's two more titbits of information in the news this month, a FDA panel warning about salmon calcitonin and cancer and part one of a systemic review on the efficacy of bisphosphonates for the prevention of fractures - they don't even work.
Kathy (just started Prolio, another nasty, but have to take something to be allowed to take AI)
Mar 23, 2013 10:20AM Moderators wrote:
Just jumping in to add a link to the article Bisphosphonates for Osteoporosis and Bone Protection, from the main Breastcancer.org site.
You're all obviously knowledgeable about osteopenia and osteoporosis, but for anyone new to the subject who looks in, there's more in this article on Measuring Bone Health.
• The Mods
Mar 23, 2013 12:02PM ginger2345 wrote:
I just read this month that a panel of advisers to the FDA recommended 20-1 not supporting advertising calcitonion salmon for the treatment of osteoporosis in post menopausal women because the risk out weighed the benefit. The risk was cancer but didn't say what kind. The panel was unsure that its use lowered the risk of fractures as well. The calcitonion salmon's continued use was approved for Paget's disease.
It's the old double whammy-first you get breast cancer-- then you do what you have to to put yourself in a situation not to get it back-- by taking drugs that create a risk for other serious health problems--so more drugs. Maybe that's more than a double-whammy. I sit around taking a series of drugs now where before almost none. I'm taking a fair amount of calcium and Vit D in addition to alendronate on top of the AI. No wonder some of us battle depression.
Mar 25, 2013 04:14PM fgm wrote:
Ginger-Are you having any side effects with the Fosamax? I started Arimidex in February and I'm having some stomach issues. I had a bone scan and found out I have osteoporosis in my right hip. My PCP wants me to start on Fosamax but told me to wait a couple of weeks so my stomach will settle down. I agree so much with your 2nd paragraph. As my brother told me, "stop having so much fun!"
Mar 25, 2013 05:23PM ginger2345 wrote:
I started on generic Arimidex and a month later on alendronate to separate out any side effects. After about 2 weeks on the Arimidex I started in with joint pain in several joints but the most significant was the knees. (And to complicate matters, I had knee trouble before the drug but it had improved so much.)Then started the alendronate and the knees have gotten worse. So maybe the joint pain is the AI or the alendronate or both--or just my knees as before, but before it was only one knee and now 2. Another double whammy perhaps.
I'll need to check with the MO at 3 months if not before, because I love climbing mountains in the summer and this just isn't going to work.
I had a little tingling also with the AI but that's settled down and I'm hoping the joint pain will too. That' s the thing, you read on the board some people have less joint pain as time goes on--in which case staying on the AI seems reasonable, but other people dont'. Figuring out what will work is trial and error, I think.
When your stomach settles down, I hope you're one who won't have side effects of either drug. You've been thru a lot already, I hope you can stop having this kind of "fun" soon!
Mar 26, 2013 06:53PM fgm wrote:
Thanks for your response, Ginger. Hope you feel better soon and you can climb any mountain.
May 23, 2013 03:27AM Member_of_the_Club wrote:
I started this thread a few months ago. Today I saw my onc who recommended I start Prolia, and I had my first injection today. My bone loss is in a downward trajectory and he wants to head it off before I hit osteoparosis, especially becasue I have so many risk factors.
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