Zometa: do I need it?
Hello BC community 
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Im a 30-something w/ stage IIb, had chemo surgery and now rads. My MO is suggesting I start Zometa when I begin taking Verzenio in a month. Im already on Zoladex.
I have a hx of a dental implant as a child and lots of other dental work, though I have great oral hygiene and haven't needed anything in years (just bad dental genes). Im nervous to take Zometa bc of the jaw necrosis (!!!!!) risk and would rather not take another med if im honest.
What are other people doing instead? Is bone loss a huge issue if you eat right and take vitamins and do strength training? I’m young and lift weights regularly, and would stick to a lifestyle change if it meant I could not take another med
Looking for alternatives.
Thanks!
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Hi! Have you had a baseline Dexa scan? I would recommend that first as I am not sure I would take bone loss medicines if I had no demonstrated bone loss - due to the potential side effects. I too have a mouth full of dental work - had crowns in high school - but I had no issues with six years of Prolia. I had twice-a-year cleanings, and even did Invisalign during that time. No problems. The osteonecrosis issues happen more frequently - and still it is not common - with those who use these drugs for bone cancer, or bone metastasis from breast cancer, or other cancers. That dosing is more frequent and higher. If you go on bone meds you should also be advised to supplement with calcium, vitamin D and should also take some vitamin K to help those others work to their fullest. You can try to get enough of those vitamins from diet and help maintain bone density from weight bearing exercise (which includes lifting weights) but for some the anti-hormonal meds prescribed as part of cancer treatment have a deleterious effect on bone that no amount of more natural means can keep up with. You won't know until you start and then monitor for any effect on your bone density. I had a total hyst/ooph many years prior to my diagnosis with breast cancer, and started Dexa scanning at that time. I became osteopenic because of the impact of loss of estrogen, but the osteopenia stayed stable, I couldn't tolerate oral bone strengthening meds, so I did nothing but eat well and stay active. I coincidentally had a Dexa along with the imaging that led to the breast cancer diagnosis so I had a solid idea of my density at that time. By the time I had been on letrozole for a while and it was time again for a routine Dexa the bone loss was measurable. I started Prolia and regained enough density that I was back in the normal range. I have since discontinued it because I am no longer on anti-hormonals after 7.5 years, and on my last Dexa I had lost a tiny bit of density, but it was still better than it had been after the hyst/ooph.
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thanks for your response, SpecialK.
I agree, I want a DEXA before I do anything. I’ve heard of Prolia, guessing it’s the same category as Zometa? I’ll do some research.
Honestly I’m just so over the meds. So many medicines all the time. But I am grateful they exist,and will help keep me cancer free.
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I'm borderline osteopenia/osteoporosis. With bone loss while on AIs over 2 years. . Drs told me not ready for bone meds yet. Also said they start with zometa not prolia because prolia is forever? I also heard some drs use it to prevent bone metastasis. Your story is confusing because why are you on verzenio for stage ii, that is for advanced cancer.There must be a reason your dr is prescribing such aggressive treatments. Maybe your age. Always good to get a second or third opinion.
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As of the end of last year Verzenio is approved for stage 2 with nodal involvement and ki-67 > 20%. I would definitely ask for a DEXA before starting bone meds so there is a baseline to compare with. Specialk's lifestyle tips are good advice, but sometimes they are not enough. I have an extensive family history of severe osteoporosis. I can tolerate the oral meds (alendronate once a week with tons of water and a 3 hour wait for food) and have done better than my siblings who have used Boniva and Prolia. My endocrinologist monitors my bone density and I go on and off the alendronate to avoid the spontaneous fractures which is a side effect of long term use. One advantage of alendronate is that invasive dental work can be done 2 months rather than 6 after stopping it. I have had to do this twice for a tooth extraction and a jawbone infection (with no necrosis on biopsy,) but noninvasive dental work like fillings and crowns is not a problem. I hope that the treatment you decide on works well.
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jrnj - I have never heard from my MO that Prolia is forever, and there are no studies on staying on it beyond 10 years because it is a newer drug. That thinking may be because if you stop any bone building drug you usually seem some level of reversal - not just with Prolia. I had injections for 6 years, and stopped. I was right where you are when I started it, but the two Dexa scans I have had since stopping do not show reversal back to where I was, and this may be in part because I am no longer on letrozole or anastrazole, so the additional bone loss induced from those drugs is not occurring. There is some school of thought that it is wise to have an infusion of Reclast after stopping Prolia to ward off any risk of spontaneous fracture, but that is not universally agreed upon. I did not read about that until after I stopped, so for me it was cold turkey - and I have had no problems at all.
Here is some info about Verzenio for early stage. It is common that drugs used for advanced stage cancer eventually work their way down to early stagers if there is some potential for benefit.
xfitmama - Zometa is a bisphosphanate and Prolia is a monoclonal antibody, they do the same thing for bone with a slightly different mechanism. Here is some info about efficacy for both drugs. There is also thought that bone that is more dense is less hospitable for bone metastasis, so some oncologists like to prescribe these drugs even if you have no marked loss of density - they are trying to prevent that since it can be an issue with anti-hormonals.
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Thanks for the info specialk. My oncologist is horrible. I tried to get in to a popular rheumatologist and couldn’t. I like my endocrinologist and she agreed to monitor bones for me as we monitor thyroid nodules but not her specialty. Froma density standpoint she said I can wait and would start with zometa. From a cancer perspective she said talk to my oncologist. But he’s an idiot and didn’t even realize I had a bad scan til I told him. But I am also very sensitive to all these meds and don’t want to add another I don’t need. Did you have any side effects?
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jrnj - you're welcome! Bummer on the MO - I think a lot of them hand off the bone issues to endocrinologists if they are not conversant with using them for patients with concerns. I initially tried Actonel and Boniva (both oral meds) when I was diagnosed with osteopenia nine years before breast cancer. I had a previous GI surgery to repair the gastro-esophageal junction in 1995 and this left me with a lot of sensitivity to the burning sensation in the esophagus that oral meds can cause. At the time the annual Reclast infusion was not being offered in military hospitals where I received my care, so that was not an option. I was followed closely and when the osteopenia seemed stable I was okayed to just take calcium and Vit D to maintain. My MO likes Prolia (both for the edge over bisphosphanates it has, and for the potential protection it offers against bone mets) so when I had marked bone loss I went on it, and I had absolutely no issues with it at all. I was an exceptional responder - had the most gain of density of any of his patients. I would go back on in a heartbeat if I need to. My BFF (has never had BC, but is osteoporotic) just started it and has had two injections so far - no problems.
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I had to start Zometa. I went on Zoladex and exemestane because of recurrence, and my baseline dexa showed significant osteoporosis (at age 44 after 4 years of tamoxifen). I'm unlikely to tolerate oral osteoporosis medications because of esophageal problems. I already had one infusion and will have my second one in a couple of weeks. I'm aware they're also using it to try to further prevent recurrence. I'm nervous about the potential for dental problems, but with my bones already trashed, 5-10 years of an AI could just make that so much worse.
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Thanks everyone,for the feedback!
I really value everyone’s thoughts. So glad to have this site and all of you.
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