Hello - I’d love to know your experience with Zometa or Prolia. My recent bone density shows what my oncologist says is “significant” loss of bone density in 2 areas of my hip and spine probably due to Letrozole. So far I have refused Zometa because my sister had developed a hole in her jaw from this treatment (she has since passed away from MBC). Im terrified of this but also don’t want to get osteoporosis obviously. Has Zometa helped your bone density enough to actually make a difference? Is it worth the risk? I appreciate your thoughts and comments.
-Mary
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And, yeah, that jaw...necrosis?...sounds like a nightmare and is something I've worried about from time to time (e.g. when I recently had a wisdom tooth removed). I've been on Zometa for 7 years...
I think there might be more things to consider as you weigh pros/cons?
E.g. I might have read that Xgeva/Denomusab (?) reduces the risk? **Not sure about this**
I think I've also read here that presence of dental implants and similar increases the risk. So
if you have anything like this, maybe it goes into the "cons" column?
Also, if you decide to move ahead with it, obviously get your teeth checked by a dentist and do any recommended/preventative work first?
I really don't know how one makes the decision. I was unaware of the potential issues when I started the Zometa and by the time I learned about them, I was comfortable with the risk?
And I do *enjoy* (I mean this seriously) picturing my bone mets healing/filling in etc. after each infusion.
Wishing you the best with this difficult decision...
Thanks for your response Lynn - yes, my oncologist said they won’t start Zometa until my dentist has verified that my jaw is ‘healthy’ so I guess I will start with that. 7 years on Zometa without any jaw issues is good to hear anyway.
When I started Xgeva I never questioned the decision. I watched a video posted on this site and I thought that it was definitely helping me. I was on it 5 years then had to stop as I was told my uveitis could be caused by Xgeva. After stopping I developed mild osteonecrosis and if you Google the rebound effect you’ll see what I’m talking about. I’ve had a lot of problems with my bones since stoppong. I had a second opinion at Seattle Cancer care and I’m now on Verzenio and Faslodex. The doctor told me she wished I could go on Zometa but the osteonecrosis would prevent that. She did say that Zometa did not have the same effect if you stop as Xgeva did. I’ve since read that if you start with a bisophonate then switch to a denonusab, you can go back to a bisophonate to reduce the effects of stopping Xgeva. Otherwise you’re up s…t creek without a paddle lol. This is my personal experience and from worrying about going blind, I’m now worrying about fractures. I’ll come to terms with it and hopefully will see some improvement. Chris
Sorry about your sister. When I asked my oncologist about the jaw thing, as I have been on zometa for three years, she said they used to give it once a month and now it’s only given once every three months. This eased my mind a bit and I hope it does yours also. —Madlyn
I am so sorry for the loss of your sister 🥺. I get this injection every 3 mths, I have no problems with. I am not sure how you would get a hole in your jaw from it?? But strang things and side effects happen with medications.
hi Deb. for some reason, both Zometa and Xgeva/prolia cause a 'decrease' in the blood flow to the jaw. yet these same meds 'increase' blood flow to the rest of the bones in the body and that is why they are helpful. with the one exception of the jaw....where blood flow is 'decreased'. and decreased blood flow to the jaw bones interferes with healing. so if you have invasive dental work done while on these meds, there is an increased chance of ONJ. hoping that helps explain why you can end up with a 'hole in your jaw'.
I was on zometa for 2 1/2 years and I tolerated it fine. but then my jaws bones started to faintly 'light up' when I had a bone scan and I decided I no longer wanted the risk of ONJ so I stopped the Zometa... with my oncologists recommendation as well. I know of at least 3 women on this board that ended up with ONJ. but many take it with no issues. I don't regret taking it at all. however, I am happy that I stopped it when I did.
Thank you Carol for your explanation!! I am always learning something new with all the meds!!! I have been on zemeta for about a yr, but will jump off if anything weird happens. I have an amazing onocologyst who watches me very closely, I am so grateful for. So far my bones are clear with letrozole/ibrance. However that combo didn't touch my liver, tumor kept growing. I just started a mild chemo pill which from my last CT scan the tumor is finally shrinking. Cancer is Just weird, medication can be just as weird. I would like a cure now.
Hi Mary--Just wanted to mention that Zometa and Prolia are different drugs, in case you weren't aware. Prolia and Xgeva are the same drug--I am not sure how they differ--maybe in concentration. Prolia is advertised for osetoporosis, and Xvega for bone mets. Some MBC ladies say that Xgeva is more tolerable than Zometa. I am not on either--but my onc has suggested it--so I have noted what is posted about them. Best to you! Kay
Thanks for your response Kay - Prolia was the other one that my oncologist had mentioned to use for loss of bone density as an alternative to Zometa. He said it was an injection in the abdomen and osteonecrosis of the jaw was a possible side effect from either drug. I’m just terrified of that ONJ but sounds like most people haven’t had that issue so that’s good
I’m so sorry about your sister. I’ve had monthly infusions of Zometa for 18 months. I find it interesting that your onc no longer gives it every months. I’ll ask my onc about monthly vs every 3 months when I see her in a few weeks. Isn’t a cancer diagnosis enough let alone a recurrence and then dealing with all these side effects. Sometimes I wonder…will I die from cancer or a heart attack or a complication from the meds. I understand now it’s about keeping the cancer stable and QOL. I am happy to be alive. I think I’m just wrapping my head around moving to the 2nd line of meds. I’ll rally!!
Yup, side effects or adverse effects, or the cancer? I think oncologists, naturally, are focused on the cancer. Sometimes we have to push a bit to get them to pay attention to side effects and QoL. I went down from monthly to every three months on Xgeva because I was having bad side effects. Okay, we can do that, oncologist said. Then I pressed to get off it because of jaw problems. "You don't really need it." Too late, ONJ for me. So it helps to keep the effect on you front and center, and to find out when it is really important for survival when you are struggling, vs. just routine.
hi Mary. I too am so sad to hear of your sister's passing. I can't even imagine.😔
I am happy that you found my reply to Debbigbang helpful.
I was very apprehensive to accept going on Zometa when I was first diagnosed with mbc....the thought of ONJ so scary to me. but what finally tipped the scale for me was an article I found that described how Zometa (and Xgeva) changes the 'microenvironment' of the bones and makes the bones unfriendly towards the cancer. so then I was in. I was actually on it 3 1/2 years (I know my reply to Deb said 2 1/2 but it was really 3 /12)before I had the bone scan that showed faint lighting in my jaw area. and then of course I went off of it immediately....didn't want to mess with my luck thus far....as by then I knew of some women who did get ONJ. and you have first hand knowledge.
it is such a hard decision. i think I would still take it again as I did like knowing my bones were being 'helped'. but I guess I don't know for sure after all. I'm sorry that I am not more helpful.
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