Is zometa given forever?
I worry about ONJ . I have been on Zometa over 3 years which puts my risk at 3%. Of course I do all the things like meticulous oral hygeine etc., but it is still a concern.
Has anyone had the zometa stopped after a number of years
I can't answer your question on the length of time on Zometa, sorry. But I do have a question as I am about to start Zometa, 3 monthly, here in NZ. Just wondering what you do for oral hygiene, I clean twice a day and use salt water mouth wash twice ( cos I'm on Ibrance) and through the night if I get up to go to the loo I rinse with a moisturizing mouth wash cos the Ibrance dries my mouth out something wicked through the night. Is there anything I should add in. Many thanks Susan
I brush and floss well 2 x daily. I go for dental cleanings every 4 months- thats it
As an FYI, I have had zero issues on Zometa with other side effects.
I was not instructed to have a dental clearance first and should have been. I have a wisdom tooth that is ok right now, she filled a small cavity, but dentist would have extracted if I was not on Zometa or if I saw her before starting. So, if you haven't already, see your dentist prior to starting and do any needed extractions
Thank you for replying. I saw my dentist on my oncologists instructions and was cleared to start Zometa, then before I could start a corner of my back tooth fell off. On my first visit she had removed plaque with a metal type drill that I had never had before, made me squirm all over the place. After the corner fell off she replaced it then told me to make the tooth stronger she would like to put on a crown and if that didn't stop the tooth deteriorating she would remove the crown do a root canal and put the crown back on. Two problems for me with that, 1. in NZ its unbelievably expensive to have that sort of work done and 2. along with the cancer treatment I just don't think I can mentally cope with that as well. Talked with my onc and she said if there is no infection there lets just go ahead with the Zometa and I am only having it 3 monthly so I just have to hope my tooth behaves, and continue with my hygiene. Sorry for the long story, sometimes it just helps to talk to someone about these incidental worries, that come along with all the other stuff.
I appreciate the full story - thanks
I have had my teeth cleaned by a dental hygienist 3 times a year for about 20 years. Other dental work as needed.My oncologist started me on monthly Zometa in March 2021. After 16 monthly Zometa treatments for bone Mets, my dentist discovered an exposed jawbone and made a diagnosis of grade1-2 ONJ. My oncologist never warned me of this possibility. Had 2 lower molars removed and then removed dead jawbone material while monitoring. Have read since that a treatment every 3 months is almost as effective as monthly treatments without the same level of risk. Be wary of Zometa if you have bone Mets from PCa.
Mike
Thank you for replying to my question. I do have bone mets in my L1 spine and R) illiac crest. My onc is keen to use Zometa to strengthen my spine. 3 months of Ibrance and Fulvestrant have stopped the growth in there. I am going to have the Zometa 3 monthly so fingers crossed that holds off any ONJ. These treatments for MBC are definitely a double edged sword and increases all the stuff we have to worry about. I do appreciate your information.
Whats PCa?
I had to have a deep root filling a few years after stopping the drug which I'd only taken for 6 to 9 months. My dentist was concerned about doing any work on my teeth because the drug stays in your system years after taking it. That was the first time I'd heard that piece of information.
My advice would be to read up on the benefits then make your decision knowing the risks. As you know, ONJ is not reversible.
All the best xx
HiI think it depends on the individual status. My bone mets are very wide spread so the bone integrity is compromised. I've been on Zometa monthly for the last 2 years since first being diagnosed. I've just had the dosage reduced to every 3mths now.
I think after that it does down to every 6 months...but I'm not sure if I'll ever be taken off it completely.
It is not only recommended as a bone strengthening agent...in the case of having existing bone mets, having Zometa infusions creates a more hostile environment for the mets to develop in and in this way their spread is inhibited.
I’m on Xgeva and have been for over 8 years. I’m nervous about ONJ too but I go to the dentist every six months so he can check and so far I haven’t had any issues although I was worried when I started suffering jaw pain in July. I held off on the injection that was due but it turned out to be an infection so I had a root canal and antibiotics. I only have the needle four times a year now but as I have multiple bone Mets I’d rather be vigilant and stay on the medication for now.
My oncologist only had me on Zometa for 2 years. I have some tooth issues that require dental work but I don't know if that was the reason.
I was diagnosed with ONJ earlier this year. I'd been on Zometa and then Xgeva for the whole 19 years with bone mets. The ONJ was found early and the one spot I've had it (lower jaw, just behind the last tooth on the right side) has cleared up. I will be seeing the oral surgeon about every 3 months, at least for a short while. My regular dentist found it during a twice a year exam. I, too, have always brushed my teeth regularly, flossed or now used a water pik, and had regular dental exams, since as early as I can rremember. I think catching it early helps alot!
Have you stopped the Xgeva now? They don't know how long it takes to clear the system so that the risk of ONJ is gone and one can have dental work. Based on my experience, it seems to be as long as nine months, not the 4-6 months the "experts" estimated.
I started refusing it, and my oncologist finally came around. It was wonderful on my bone mets and they were all resolved, so she said I didn't actually need it but she kept ordering it. It was too late when she agreed to stop. I had had a tooth pulled with no ill effects, but ONJ went after two implants.
A year later, I got bone mets again, but since I had ONJ, I cannot have Xgeva again. All of this was avoidable. My advice is to stop Xgeva as soon as bone mets are gone, and restart if they reappear.
Oh yeah, stopped Xgeva as soon as I got the ONJ diagnosis. Guess I'll never have it again. These bone met drugs have such l o n g half lives--and who really knows how predictable those are! I've never had "issues" with any of my bone mets, though the mets in my lower back made the neurosurgeon take twice as long with surgery for stenosis in that area. I've not had pain or fractures in any of the metty places.
I am finding these replies very helpful, but your mention of a water pik which I had never heard of before made me go and Google it. I will now ask my dentist if i should get one. Currently using an interdental brush.
I use my waterpik 2 x a day since starting Zometa. I want to do everything I can for oral hygiene. I really love it, I find after brushing and rinsing, the waterpik always manages to get a few small bits of food. Who know if that will make a difference, but it makes me feel better
Your 19 years gives me hope. This damn diagnosis takes me from feeling great some days and then reading stats and getting very scared.
Yes, I read on this forum that 3 years was max for Zometa. Asked my onc and yes, he said thats true and so my last Zometa was last month at three year mark.
Good morning, I took zometa for four years then I got onj and all my teeth just started falling out along with all the lower bone. I had them all removed and cant have dentures because if anything rubs on my gums the bone starts coming out. Zometa stays in your body for years If I were you I would stop it now, good luck hope this has helped. Also I am into this journey for 14 yrs with mets first diagnosed with breast cancer in 2004.
God bless you
Becky
I’ve been on it since 2015 and nobody’s talking about stopping it. 🤷♀️
Oral hygiene has little to do with ONJ. I got it after 6 years of bisphosphonates (Zometa and Xgeva). Mine started with what I thought was an extra tooth growing—felt like teething. My dentist didn’t have a clue what it was. I’m told it’s a rare side effect. I started treatment with a specialist in May ‘22. It may take two years to resolve. Last fall it got infected and i couldn’t open my mouth to eat more than fluids. I wound up in the hospital for 9 days.
Just be watchful!
After my own question I found a relevant article. Oncologists will say it is a "rare" side effect. I hate when they use those generalizations . In the case of MBC it is 3%. Three in 100 is significant as far as I am concerned if you are one of those three. In case anyone is interested here is a link to this study.
Hi all,
Bone density drugs seem to be treated very differently depending on the doctor and where you live.
Before cancer I had developed TMJ - it’s a jaw issue. But after learning I had MBC and that I needed back surgery to replace my T12. I was put on Aredia for 2 years then I was off for 2-3 years. I then started Zometa when I had radiation at my C5 and micro fractures developed.
I was on it for 2 years. Nothing but cleanings during that time, with the exception of 1 very needed filling.
1 year post I have had 2 root canals and crowns without issue. I wear a mouth guard at night for the TMJ and to guard against grinding. I feel very confident in my oncologist’s plan to do intermittent bone density treatment to protect my jaw.
I hope that information is a little helpful in your decision making process.
Hugs
Tammie
I started on Zometa a month after I was diagnosed…I had radiation to my my right iliac but the tumor had left my pelvic bone spongey….it was literally bending as I walked causing a limp. When I started on Zometa the bone grew back in…that’s why Zometa is so important for bone Mets it literally replaces bone that has been destroyed by tumors. Another thing…women on aromatase inhibitors develop osteopenia …so you literally need the Zometa to replenish bone loss.
I know the jaw disorder is terribly concerning…but it usually happens when there is bone /root work done…fillings and cleanings are fine. You have to wait a month after Zometa before that kind of work.
How long on Zometa? I was on it for two years monthly and now one year every three months. If my scans show cancer progression I will be back on the three month schedule of Zometa….it’s a cancer drug for us with cancer. My blood calcium levels are fine so my bones are retaining their calcium. However, Zometa is not forever…it has its limitations.
I have been on the Xgeva for 5.3 years now, and I have it every month, and I’ve been feeling the same about it as you. It’s constant worry. But recently I had the need to have a tooth extraction and of course my fear went through the roof up to 99%. It’s been four months now, since I had the extraction, and although there’s still a little bit of a hole in my jaw, because it took a long time to heal, it never got infected, and I never got jaw necrosis. They took me off it while I was having it done, and for a few months afterwards. But I’m back on it now. I had the dentist and my oncologist, who work as a team looking after me through the hospital. Phew. Thank the goddess that’s over.
Thanks. That really helps.How long was it held for?
Did they do prophylactic antibiotics or mouth rinse?
Zometa side effects
Zometa and toothache 
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Zometa
ONJ, zometa, xgeva
