Posted on: Oct 28, 2011 12:13AM
I'm due to start medication for osteoporosis prevention as diagnosed with increased osteopenia after chemo and radiation and i have to choose between prolia or zometa.
Was going to start Bonive but oncologist recommended better to start zometa or prolia.
I would like to hear your experience around these medications please to help me choose.
I was diagnosed with osteopenia in May 2011 and from then i had dental issues ans was repairing teeth until now so i would be able to start treatment.
I'm afraid for the osteonecrosis of the jaw as i have read the severe consequesnces of these medications and now i'm very confused and afraid.
Anyone with similar experience?Log in to post a reply
Posts 1 - 27 (27 total)
Oct 28, 2011 10:21AM , edited Oct 28, 2011 10:22AM by otter
Here in the U.S., "Prolia" (denosumab) is approved to treat or prevent bone-thinning in post-menopausal women who are at high risk of osteoporosis. It doesn't matter whether they have cancer or not, or whether they're on "hormonal therapy" or not. It was also approved recently (this fall) to treat or prevent bone loss in women who are on aromatase inhibitors, but that wasn't its first approved use.
"denosumab" is also marketed as Xgeva, which is used to treat bone mets in women with Stage IV breast cancer. Again, it doesn't matter whether their tumors were ER+ or not, or whether they're on hormonal therapy or not. It works in either case.
Many of the side effects and risks associated with Prolia are the same ones seen with Zometa. One difference is that Zometa can contribute to kidney damage and renal failure, while Prolia hasn't been linked to that problem. Both Zometa and Prolia have been linked to osteonecrosis of the jaw.
Here's a website that describes the various approved uses of denosumab: http://www.cancer.gov/cancertopics/druginfo/fda-denosumab
Oct 28, 2011 07:30PM cycle-path wrote:
With sources listed at the end, here are some things to understand about osteonecrosis of the jaw (ONJ):
1) ONJ is serious, but so is osteoporosis! A very significant number of people die of hip fractures, though I don't think anyone has ever died of ONJ.
2) ONJ has, for some time, been understood to be a rare complication of cancer treatment (chemo and rads) itself, even without the addition of bisphosphonates.
3) In the vast majority of cases of what's considered to be bisphosphonate-related cases of ONJ, the bisphosphonate being taken was INTRAVENOUS, not oral.
4) Most individuals who developed ONJ after taking bisphosphonates were prescribed HIGH DOSE bisphosphonate as a treatment for bone metasteses, not LOW DOSES for osteoporosis/penia.
5) ONJ is pretty rare, and a minority of ONJ cases have been associated with bisphosphonates -- estimates range from 1 in 100,000 to 1 in 250,000.
6) Most bisphosphonate-related cases of ONJ have occured after a major, invasive dental procedure such as tooth extraction.
Nov 1, 2011 12:11AM nastazia_s wrote:
It seems that Prolia is better than Zometa but maybe in the future with more researches be done the same consequences with Zometa(kidney damage and renal failure) be seen.
You are trying to treat something and at final you cause another problem!
I'm really very confused to choose what to do...!
Nov 1, 2011 05:52PM Micnar25 wrote:
I was originally a stage I breast cancer patient in 1998 (age 30) w/bone mets in 2003 and I was put on Zometa (at age 35). I have to tell you, had I known about ONJ and High Dose Zometa back then, I would have elected to NOT take Zometa (or any bisphosphanate) had I known about ONJ (it was not reported as side effect back then). No one even knew about this side effect until after the fact. I am now surviving stage 4 breast cancer (her2-/Estr+) and a second primary (her2-/estr-) and have had recent progression in bones (15 tumors in spine, hip, shoulder) and now my lungs. Thankfully, as hard as cancer has been, I am doing OK with my cancer and Oxycontin allows me to function daily. HOWEVER, I can honestly say, though I have had major problems with Cancer, I think my ONJ is just as bad, and Bisphosphanates can be horrible if taken in high dose. I realize the side effect is rare, but please read the literature carefully, speak to people with ONJ, and also speak to a Maxio-Facial specialist and your dentist and get dental procedures in order (as it seems you are doing). I think the key here is that I was given Zometa at a HIGH DOSE via INTRAVENOUS for bone mets, you are not, so one would think it should be safe at low dose. In hind sight, I would not have taken in such a high dose, but may have considered low dose oral medication. Obviously my bone mets is VERY different from your osteoperosis. I like the facts that Cycle-Path has given (well thought out); but although not many have died from ONJ, it can be horrific to live with.
Nov 2, 2011 07:07PM cycle-path wrote:
nastazia, has your doctor suggested anything else to help your bones? I have known of women who were able to improve their bone density with exercise, diet, and dietary supplements. I think it's a lot of work, and requires some dedication and discipline, but apparently it's possible,
Nov 11, 2011 02:33PM nastazia_s wrote:
Hi Michelle, and i really understand and feel all these concerns.....
How are you doing now?
I just finished all dental issues and thinking to starting zometa twice a year.
I spoke with specailist .....the risk is allways here........but what choice do i have?
I take calcium and vitamind d3 supplements and now im gonna start and magnesium.
Are you having any daily supplements?
What therapy and follow up care do you have?
All best wishes...!!
Nov 11, 2011 02:35PM nastazia_s wrote:
cycle-path hi and thank you for the reply.
My doctor recommended calcium and vitamin d3 which i take daily: 1200 mg calcium and 2000 units vitamin d3 daily. Now i will start and magnesium.......what supplements are you having?
i also exercise and walking as much as i can.......how about you?
Nov 12, 2011 06:34AM sam52 wrote:
Even with osteoporosis (-2.8 at lumbar spine, -1.5 at hip), my endocrinologist advised AGAINST treatment with any bisphosphonates,saying that for my particular situation, the possible serious side effects outweighed the benefits.
She used an online med site which gives graphs to show who would benefit from treatment and who would not. It is called FRAX. You put in factors like age, weight, smoking history,etc etc which all determine your likelihood of fracture.
She also urged caution with calcium supplements, saying that for postmenopausal women, there is a risk of excess calcium being stored in the arteries, leading to atherosclerosis.She said it is preferable to get calcium via the diet.
Nov 12, 2011 06:56AM sam52 wrote:
I have just looked at the FRAX site again just now and note that the treatment/ no treatment graphs appear on the UK version, not on the US one. However, there are recommendations based on the replies you give, which give you an indication of whether you are at greater or lower risk of an osteoporotic fracture within the next 10 years.
I think it is still a very useful tool and one which you might discuss with your endocrinologist.
Nov 12, 2011 07:11AM Marybe wrote:
I was on zometa for years, cannot tell you exactly how many without going back and looking it up, but would guess maybe 9 ?......before that did aredia ( started on that one in 98) which is basically the same thing, but it took a lot longer to get it so when zometa came out my onco switched me to that. Then just this past year I have been getting Xgeva which is really a simple one, an injection in the arm or stomach and I always get it in the stomach. I believe it has less risk of kidney damage of which I have had none on any of the mentioned treatments......also I have never had any problems with osteonecrosis. With each treatment I got it once a month. I never had any problems with any of them. No signs of osteopenia (sp) or osteoporosis when I have bone density tests done.
Nov 13, 2011 11:04AM otter wrote:
Re: FRAX analysis
Both my med onco and the osteoporosis doc (endocrinologist) to whom she referred me use the FRAX calculator to estimate fracture risk. Here's a link to the U.S. version: http://shef.ac.uk/FRAX/tool.jsp?country=9
If you go to the FRAX home page (http://shef.ac.uk/FRAX/index.jsp) and click on "Calculation Tool", you can select options from the drop-down menu that will take you to the tool appropriate for your continent, country (usually), and race. The statistics underlying the risk calculation vary somewhat depending on those things.
My med onco and osteoporosis doc are both cautious about using bisphosphonates where they aren't clearly warranted, because the long-term effects of those drugs are not known. They are also reluctant to use DEXA bone density results by themselves to make decisions about bone-strengthening drugs.
For instance, a baseline DEXA scan showed that I was already osteopenic when I started on Arimidex 3-1/2 years ago; but neither of those docs wanted to put me on a bisphosphonate. That was because my fracture risk according to the FRAX analysis was very low.
One thing that does concern me is that the FRAX formula does not take cancer treatment into account -- there is nothing on the checklist for those of us taking aromatase inhibitors, for instance, even though AI's have been shown in short-term studies to increase fracture risk.
Feb 15, 2012 07:16PM tenaj wrote:
I went to my onc today for a 6 month check up. I had my 1st zometa infusion 10/11, he was unaware of SE I had, figured I'd tell him when I saw him. I tell him & he says that he switched his patients months ago to Prolia because of the SE's. He's putting it through my insurance for authorization. Now I'm left wondering how 4 months ago this we the right plan for me & now he's doing using this. I'm confused. I'd like to hear from some who have been on Prolia or switched, or just some opinions on this. My bone scan was normal 5/11, I have been on lupron & femera since 8/11. Anyone have input re: this?
Feb 18, 2012 05:41PM MondaysChild wrote:
I think the change you heard is because Prolia was only recently approved for the prevention of osteoprosis in addition to the treatment.
I received mt first Prolia injection on January 23 and have no issues at all.
Feb 23, 2012 06:00PM tenaj wrote:
Are you osteopenic? Or are you getting it for prevention? Like being on AI"s?
Glad to hear your injection went well. Still have not heard about the insurance coverage.
Feb 24, 2012 02:32PM MondaysChild wrote:
tenaj: I do have mild osteopenia, but was put on Prolia for preventative purposes. I am on the aromotase inhibitor Femara. The Prolia is to counter its negative impact on bone density and strength.
Feb 24, 2012 03:20PM tenaj wrote:
Tampa, thanks for getting back to me. I am also on femera . How often will you be getting the injection. If my insurance approves it I will be getting it every 6 months instead of the zometa.
Feb 26, 2012 08:04AM tenaj wrote:Tampa, thanks. Have a great day!
Feb 27, 2012 08:22AM , edited Feb 27, 2012 09:38AM by 11BC
Best wishes to nastazia_s and everyone in this discussion.
I've been getting Zometa IV drips every six months, following ACT chemo and radiation for Stage 3 breast cancer. My first IV drip was in July 2008. I also started taking Tamoxifen at that time. I'm concerned about developing osteoporosis because my Mom has it, as did my paternal grandmother. So far, I have not experienced bone loss. But I plan to continue Zometa given that my oncologist suggests I switch to Arimidex (an AI) after five years of Tamoxifen. AIs contribute to bone loss.
I have not been regularly stretching, weight lifting and doing aerobic exercise for the past 1.5 years, since developing lymphedema. My goal is to increase my physical activity, especially weight bearing exercise because that will help prevent bone loss.
Zometa side effects: I get a headache soon after getting the IV drip. I found I can prevent that by taking two 500 mg Tylenol at the same time as the drip. My oncologist suggested that and prescribes the Tylenol along w/ the IV drip. I feel fluish, achy and tired about three days after getting an IV drip. That passes in about two to three days and I feel well. I found if I do acupuncture a few days before, the day of the IV drip, and a few days after, my bone pain/achy feeling diminishes.
I haven't tried or looked into taking Prolia.
My mom, who is in her 70s and has osteoporosis, reversed her bone loss through working with a naturopathic doctor. She takes calcium, magnesium and Vitamin D3 supplements and regularly (three or more times a week) lifts weights and does aerobic exercise.
Feb 27, 2012 09:46AM 11BC wrote:
nastazia_s: I also was concerned about osteonecrosis of the jaw, a rare, but possible side effect of Zometa (which I started taking in July 2008). I let my dentist know I was getting Zometa IV drips. I had a root canal in late 2009, which healed nicely. The dentist and I continue to monitor my teeth and jaw. Good luck to you.
Feb 27, 2012 10:30AM MostlySew wrote:
Did any/all of you have a calcium blood test before starting the Prolia? I ask because I will start Prolia due to osteoporosis brought on from the AI I'm taking. I'll have the injection every 6 months. I've read that you should have a blood calcium test before starting Prolia but I'm not certain this is necessary.....especially since I haven't had that (at least to my knowledge) and I start the injections tomorrow. Hmmmm...should I send up a red flag to the MO or just go with it? Thanks
Oh, and as a precaution I think I'll take a couple of Tylenol on my way to the injection, good tip.
Feb 27, 2012 12:05PM 11BC wrote:
My oncologist checks my blood calcium levels each time she draws blood (at my regular six month checkups). More importantly, I had a bone density test before starting Zometa -- to set a baseline. I then had another bone density test a year later. Now my insurance covers me having bone density checks every two years. My oncologist orders the tests.
Feb 27, 2012 12:43PM MostlySew wrote:
Thanks, 11BC, I have had the bone density, which is how we knew I went from osteopenia, which I've had for years but was stable, to osteoporosis. I've read that the calcium test is important, but while I love my doctor, dealing with his office is terrible, and I've actually been trying to get an answer to the blood test question for a week. Guess I'll try calling the, again.....
Feb 28, 2012 07:12AM 11BC wrote:
I'm not a medical expert. On questions like yours, I try to consult my doctor/medical professional.
I just found this Web site about understanding the blood calcium test. It describes how it is used and when it is ordered. The Web page also notes -- if you scroll down to the end -- that the calcium blood test does not measure bone density (as you already know).
Do you have your Vitamin D levels checked during blood tests, along with your blood calcium levels? My oncologist monitors my Vitamin D levels and we've found that to be very helpful. During chemo my Vit D levels dropped very low. Vit D helps the body absorb calcium and also boosts the immune system.