Bisphosphonates or not?
I'm curious how many Stage lll-ers are on a bisphosphonate. My onc has not even mentioned one to me even though I have been on an AI for over five years. Seems to me, that alone would be a good reason to be getting one. But reading about recent studies that say they help prevent the holes in bones that breast cancer cells like to settle in, I feel even stronger about the need to be getting something.
I know the drawbacks...jawbone necrosis and all that. But wouldn't prevention of metastatic disease outweigh that?
Are there any other contraindications for prescribing one? Maybe my onc is holding back for another reason. I certainly hope it isn't to use it as an adjunct met tx. I'd rather it be used for prevention.
Comments
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NancyD,
I think you're smart to want to get on a Bisphosphonate after five years of AI. First, though, you might ask for a DEXA scan, which will show the amount, if any, of osteoporosis that you have. If you have bone loss, I think your onc would not hesitate to prescribe Fosomax or Boniva.
Yes, mets disease does outweigh that, imo. The studies are a bit contradictory, but seem to be changing in favor of "yes, they help protect against bone mets." My onc wanted me on one back when I was Stage 1 taking Aromasin. I balked because of the side effects. Three years later, I had mets to my bones. Would it had made a difference had I started a bisphosphonate when suggested? Maybe. What I do know is that once I had mets, I started taking Xgeva and it has really helped my bones get stronger. If I could go back in time, I would take a bone drug from the get-go.
The side effects are kind of scary,but most of the problems come from the injected Xgeva, infusions of Zometa, or from people who have been on the drugs more than 5 years.
It seems that asking for a Dexa scan would be a good starting point.
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The studies do not seem clear and the more I read about bisphosphonates, the more it seems to me that they do not offer enough bang for the buck. So far my doc agrees and he is pretty up on the latest research
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I had my first Zometa infusion today. It seemed to me that the most current research demonstrated benefit in recurrence prevention, and my MO gave it the green light.
It was given at the same infusion center, same nurses, same beeping IV pumps, as my chemo in 2012. A bit unnerving to sit in "the chair" again, but thankfully, it didn't take long.
I'll say a quick prayer that it does its job, and get on with life. Between job and bicycle and grandbabies and books and weddings, there's too much to do to let that dark cloud hover long.
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I have been on Zometa for the last 6 years. At that time there was some evidence it might help the er/pr pos ladies and not much evidence for er/pr neg ladies. Never the less as i had very low BMD I was able to convince onc to give it to me.
Still very little evidence to make it standard of care..but now my onc is afraid to stop it as i still have NED at the 10 year mark..I am on it for life he says. It makes me miserable for a few days but it is a small price to pay if has actually prevented mets.
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yep, me too. had to fight abit for it.
but less porous bones = less chance of bone mets.
works for me.
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Had to fight for it also. Started it last spring and it does slow me down for a few days...ugh! They say the gene MAF triggers a set of functions in the cell that allow metastasis to take place in the bone....its my understanding Zometa helps the bone to with stand this process! Hope so!!
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I, too, had some convincing to do with my onc. I'm not sure what turned the tide this last visit, but it was "we don't need a PET scan this year" and "ok to Zometa." What, specifically, makes you miserable as far as side effects? When does it start? How long does it last?
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I get muscle pain..not cramps just diffuse pain, i feel like I am coming down with something fro a few days. pain improves with Ibuprofen usually happens day 2-4 for me.
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I did not have to fight for the Zometa. My onc readily agreed to give me the infusions twice a year as a breast cancer recurrence preventative. I have had two infusions thus far (my final chemo was 7/24/14), with absolutely no problems at all. Not a single side effect. I first had to get an assurance from my dentist that I had no serious dental issues. In response to my question, she said that she would recommend I get these bi-yearly infusions (they only last 30 minutes) for two years. However, when I get the next one in November, based on a posting above, I'm going to ask why not 3-5 years rather than only two? If TN is going to recur, it usually does so within the first 3-5 years.
Paula
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The day after infusion I feel as though I am coming down with the flu in my muscles, I have a low grade fever and a headache! I do hear of some who feel nothing and that is wonderful...was hoping the same for me but, that is not the case. It takes me about a week to get past the ugh feeling and back to myself. I mentioned wrong before...had my first infusion last fall, second this spring and am due again in a month. I don't take lightly that I am doing these as there are side effects, but I am strongly ER+ PR+ with a grade 1 cancer....chemo is not very effective on my cancer so I need to put up as much of a fight with other means as I can!
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Urgh...I get it now. Low fever, muscle pain, headache, backache...all I need is a sore throat and a cough to make it the flu. But I'm hoping it's another layer of protection. Next dose...Easter!
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I also get zometa every 6 months. I actually tried to put it off but my dexa scans came back with more bone loss each time from aromas in. My first treatment felt like the worse case of the flu ever. That night my fever was 104.2 but the next day I felt better and the day after I was fine. The next two times were not bad at all. When she was starting the infusion, the nurse told me to promise that I would come back and it would be better the next time and she was right. She said a lot of people feel sick the first time but do well after that. My bones have improved significantly. I'm really thankful because I was wanting to continue with aromasin. My onc told me i'll continue with it every 6 months while I am on aromasin.
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A tip, that you may already be aware of. Hydrate really well. Drink water before, during and after. My only side effect was getting up all night to pee:). Sorry some of you ladies had SEs. With TN, I'll take anything I can to possibly prevent recurrence.
Paula
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I'm so glad to see this topic. I just got notified that I have ostepenia. I had a DEXA scan two weeks ago dispite my insurance refusing to pay for it because I had one last year for baseline. Last year it was borderline low. I made an appointment to talk this over with my MO. I'm already doing what I can to reduce bone loss but can't do much exercising until after my second hip replacement next month (arthritis). I'm glad to know about side effects and will take that into account when I schedule the infusion.
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I started Femara in July 2012, and my DEXA scan was completely normal in July 2013. I had a finger scan last week and I scored in the osteopenic range. My onc ordered the Zometa without knowing about this latest scan result--it was strictly for recurrence prevention--but I'm glad to know it will help strengthen the bones that Femara has weakened. I have a large, German frame and exercise a lot, so it has to be the effects of the aromatase inhibitor.
Feeling better this morning--yay! I hope it doesn't start cooking again this afternoon. I will schedule the next dose on a Friday, so I can stay home and whine.
My onc has said I'll be on Femara for at least ten years, probably longer. I'm very happy to be on Zometa now. I don't want to survive breast cancer and die of a broken hip!
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Ladies, are you seeing any impact to your teeth? Has anybody done any implants or other dental work like root canal or crowns since starting bisphosphonates? -
Ladies,
ONJ is a low incident risk of bisphosphonates. It is not common, but very painful when it does occur, which is why all invasive dental procedures need to be done before starting to use them. BTW, spontaneous femur fractures are also a known, but low risk se. There are some mo's who are limiting length of bisphosphonate use because of this. Not trying to scare anyone off but it always pays to know the possibilities. -
yes, i have issues with my teeth. i think it's more to do with the chemo fall out then the BISPHOS. anyway, i get my infusion now yearly and do all my dental work (implants, etc) as far out as possible 10-11 months before my infusion.
i am well hydrated and have no side effects at all.
maybe my body is just getting used to it.
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I haven't seen my onc since I started this thread, but when I see him next month, I plan to ask him about starting Zometa or some other bisphosphonate. The line he's given me up to now has been that my bone density tests have been good (although falling very slightly each time), and he's not recommending it based on that. I guess he doesn't want to try and make a case to my insurance based on still good density. I don't think it's something I want to pay out of pocket. Anyone get denied by their insurer and have to do that?
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nancyD, I have IV Zometa every 6 months and just had it in August. My MO said that if I wanted to, she would prescribe the equivalent dosage in pill form. My insurance has always approved IV Zometa.
I wonder if pill form had the same strength affect as IV and if so, if one would have to pay out of pocket, if pill form would be cheaper?? Just thinking about your question....
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Nancy, My onc wasn't sure if insurance would pay for the 2nd six month infusion (she thought no issue with one per year), but they did covered both. Medicare is my primary.
Paula
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Paula, I won't be on Medicare until 2016 so until then I have inexpensive "bare-bones" coverage through my state exchange—honestly I am thankful for that because without the Affordable Care Act I wouldn't have anything. But it is hard to say what they will approve or not approve since this was instigated long after my BC first was diagnosed. I will probably have another density test this winter, so I might have better "ammunition" if my bone density has fallen even more. I've been on Arimidex since 2008!
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selizabeth, I've never heard of a finger scan. Is that something new that can be readily done in an office?
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NancyD, I haven't either, but I was at a medical conference and one of the vendors was demo'ing one. I have a regular DEXA scan scheduled for Monday so I'll compare the two and see how accurate the finger scan was.
For side effects, this drug apparently gives you malaria. After the Monday afternoon infusion, I was fine until Tuesday afternoon, and felt pretty terrible. Fine Wednesday and Thursday morning, then Thursday afternoon, WHAMO. Fever 101, intense pain in ribs, knees, back, head. Wow. I'm still a little sore and slow. This stuff better work.
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TectonicShift, I'm surprised the benefit is that small. According to the research I've dug into, it seems to be higher than that. How long ago was it that your onc showed you the chart?
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