zometa break after 6 years?

[TwithBC]

hello — anyone told its okay to take a break from quarterly zometa infusions (or any biophosphonates) after long time (over 5 years); my oncologist was certain that 5 years was enough — saying I have a lot in me from those years — but I have read from others that they are on it way past that some 8-10 years?? Anyone know stuff about this? (Should I just keep going I wonder since I’m not having any side effect — teeth issues, etc).

[GollyG]

Hi there, I was on zometa, then switched to denosumab as a more convenient self-administered treatment during the pandemic and stayed on it until I floated the suggestion to my oncologist that I have a break from it. I'd read that after a few years, benefits are unclear and risks of side effects increase. She was happy with that, saying my bones are strong despite metastasis. I can go back on if needed later on. Hope this helps,

Gill

[TwithBC in reply to GollyG]

Thanks so much for posting — that does help. And “gettinf back on it” option was also mentioned by my oncologist; it just feels scary rocking the boat of a “good thing” — having been stable for 6 years. Best to you thanks again for responding …

[Hopeful4Cure in reply to GollyG]

Here too. Doc said the same and I need to have a crown post changed to an implaint. Have to be off for at least 6 months for dental. Still taking vd3. Bones are strong too despite mets.

[TwithBC in reply to Hopeful4Cure]

… bones are strong despite Mets…awesome!!! Really encouraging to hear!

[Tolife_18 in reply to Hopeful4Cure]

I needed some dental work as well and end up going to the MSK dental because no regular dentist/surgeon would touch me despite being off Xgeva for 7 months.

MSK dentist explained that despite stopping Xgeva, changes in my bones are already happened and are not reversible. Therefore, only necessary work was done to avoid ONJ 🤞. Wasn’t cleared for an implant.

[TwithBC in reply to Tolife_18]

no regular dentist/surgeon would touch me despite being off Xgeva for 7 months… OH MY WORD—really! That’s crazy.

[Tolife_18 in reply to TwithBC]

Yes, there is a high risk of osteonecrosis of the jar (ONJ). So I understand. Lucky to to have this opportunity to see MSK dentist.

[Hopeful4Cure in reply to Tolife_18]

Hear you. My dentist needed a note from my doc telling her it had been 6 months since my last treatment. I had it every 3 months too/quarterly, more or less. I am actually getting a 2nd opinion with another dentist, because I really do not want an implant.

[Iwasborntodothis in reply to Tolife_18]

yes - I wrote a post on this - no one wanted to deal with me. I had a root canal (some kind of water based thing) and they capped it at the gum line with the remaining root left in place and they would not do a cap..my onc still worries about my mouth and sternly tells me to scrub it at every visit

[Gmaoftriplets]

My oncologist also had me stop my Zometa infusion’s in November, it had been six years for me as well. She said I didn’t need them anymore and she will monitor with bone scans.

[TwithBC in reply to Gmaoftriplets]

So helpful! Thank you for sharing that!

[Blondslovelife]

You should get a bone density test done. I have one every two years & it will show what your bones are like on the inside.

[TwithBC in reply to Blondslovelife]

Does your oncologist schedule that or you GP?

[Blondslovelife]

My oncologist. It's a very easy test. You just lay on table and the scanner goes over the top of you.

[TwithBC in reply to Blondslovelife]

Wow; okay! Thank you so much for sharing that! I’m going to ask.

[Blondslovelife in reply to TwithBC]

You are very welcome!

[Hazelgreen]

Please trust your oncologist!! It seems to be relatively rare for physicians to suggest stopping meds, and zometsa does have serious side effects! Be glad if you have strong bones, instead of worrying needlessly that they are about to collapse...

[TwithBC in reply to Hazelgreen]

What? (Not sure who this is directed to); I am not reading anyone taking advice from physicians to stop oncological medications. Plus no one here seems to be worrying —especially not needlessly!— that their bones are collapsing … I however have had one collapse just for information sake—it’s how I discovered my stage 4 status—strongest bone in my body—cancer ate through my femur, at age 45.

[TammyCross in reply to TwithBC]

It was directed to the original post. The question posed in the post was that her oncologist recommended going off Zometa but she wondered if that was a good idea. She was concerned about stopping because she has done so well on it and had no side effects. So she was questioning the oncologist's recommendation. You must have missed the original post.

[TwithBC in reply to TammyCross]

My bad — I wasn’t clear — the oncologist didn’t suggest my stopping — I proposed it …my oncologists have always allowed me to make requests on various treatment options — as someone noted already, there isn’t a firm study/ confirmation or agreement about timeframe of zometa — I was the one choosing to stop—I wasn’t questioning my oncologist but my own decision…he would allow me to continue my regimen if I wanted to …also the “stop worrying needlessly…” seemed odd as none of this was from worrying needlessly, but sincere questioning other people’s experiences—which vary considerably.

[Hazelgreen]

According to Cancer Research UK, "How long zoledronic acid is given for depends on why you are having the treatment. If you are having zoledronic acid to help prevent the cancer coming back, you will have an infusion once every 6 months for 3 to 5 years."

[Garnet131]

I had quarterly Zometa infusions for 4 years (2017-2021) when my oncologist said I could take a one-year break if I wanted. She knew I was very nervous about ONJ and commented that there wasn't a lot of research on long term effects of Zometa. I still haven't resumed Zometa, though we've been talking about it, mainly because pulmonologist prescribed inhaler with steroids (bad for bones), but it ended up that I only used inhaler for less than 3 weeks, so still haven't restarted Zometa. I'm sure we'll discuss it again this week. She is one of the top oncos in the city and I trust her judgment.

[TwithBC in reply to Garnet131]

really appreciate you sharing your experience (and the perspective of a top one)!

[kokopelli2017]

hi Tracy.

interesting subject. we debated on this topic on this forum a year or two ago and conclusion was no 'set answer'. some oncs are prescribing indefinitely. some are cutting off after 4-6 years. as was already mentioned....this is a new drug from the standpoint that they don't know what the longterm effects will be. while I was very thankful to take zometa (bone mets also), I asked to go off after 4 years. I had a big fear of ONJ and didn't want to push my luck. I figured 4 years was a good chunk of time. my oncologist was fine with that. she also said, right from the get go, that my bones would be forever changed....stronger...like the 'bionic women'....(dating myself...lol).

interestingly, she was right. I am contemplating a big spine surgery and the surgeon ordered a bone density test, assuming that I would show osteoporosis. from outward appearances, I look somewhat frail with my twisted spine and all. but the bone density showed I did NOT have osteoporosis! not even osteopenia (precursor). my bones are STRONG! and I stopped the Zometa 2 years ago.

I personally felt that 4 years was enough. and now, after recently having that bone density test and getting such great results, it reinforces my view. not sure there is a right or wrong answer? but your decision to make, of course.

best wishes to you🤗

carole💜

[TwithBC in reply to kokopelli2017]

Carole! hi -- we chatted before -- so good to hear from you. This is so so helpful to me. So glad you chimed in...I PRAY PRAY that you do surgery and that its beyond successful for you -- I had read your situation/spine deformity etc. OH I am so hoping that surgery is for you and that it gives you relief and more mobility and more than we ask or imagine. hoping this for you like I would be hoping for myself! Thanks for sharing this information. so great to get personal experiences from people on this forum; best to you -- if I recall you have some grand babies to chase around .... is that true?

[kokopelli2017 in reply to TwithBC]

thank you Tracy. wow, your reply really touched my heart...so so sweet of you💛!. and I definitely remember us chatting😊.

miraculously, I 'found' this surgeon at Mass General in Boston after several years of dealing with this progressively worsening spine. Dr. Hershman, recruited aggressively by Mass General, only accepts the most severe cases for his 'complicated spinal correction' surgery. after a review process...he accepted me...mbc and all. yay! (another surgeon I had seen told me that I was NOT a candidate for correction surgery due to the mbc and I thought all surgeons would say the same). however, Dr. Hershman was very upfront that this surgery is a last resort, when "you are miserable". reason being is because the recovery is so brutal (his words)....very painful and very lengthy...8 to 12 months. that's a big time commitment, especially with mbc when we never know how much time we have. but I said sign me up... because I am beyond miserable! the surgery is hope.

but unfortunately, surgery is now on hold...indefinitely. I recently developed a brain disorder called 'cervical dystonia'....painful condition where brain mistakenly sends out signals for your neck muscles to contract....causing severe muscle spasms in your neck, resulting in your head being pulled down toward your shoulder and your chin pointing upwards. yup, very freakish looking. in addition, the pressure builds within your skull and sometimes my neck will 'lock' and I can't move it. this happens all day long....over and over and over. my neck is exhausted. I am exhausted. I am already trying to hold my body up and now I am trying to hold my head up. there is no cure. but there is a botox treatment that works in 70% of patients. you need to see a 'movement disorder neurologist' to treat you. I am waiting (that's what we do, right..lol) to hear back from Mass General neurology. had to see PCP first. slow process. I've been dealing with this for 2 months now...always waiting for the next step in the process. this is slowly driving me crazy. I can't deal with being couch bound already and now with these crazy non-stop neck spasms and my head bouncing all around. sorry...I really had to vent that. obviously, I can't do surgery until this neck thing is under control. I wouldn't be able to withstand the recovery. hoping I will see neurologist soon and hoping I respond to treatment.

on happy note..the grand'cubs' are great. they are so adorable..2 and 4. they are my joy🥰

I know you have two young children. you are the one who is chasing😉. I hope they are doing well.

this is long...probably should have PM'd you. too late now...ha! thanks again Tracy for your reply.

carole❤️

[TwithBC in reply to kokopelli2017]

Carole—I read your response the other day and have been thinking of you since; that neck thing! Just! Wow. Lady—you are in my heart. My prayers. I can only imagine this set back. Thank you for the update. I’m sure others would want to hear (no need to PM this) to keep you on in their prayers as well.

[kokopelli2017 in reply to TwithBC]

❤️

[Hopeful4Cure]

I agree and when we have the need to have dental work done or just taking a break, because we do not know the long term issues it is our decision along with our doctor to make that choice to stop. Being told that our bones are strong from taking vd3 and or zometa is a good thing. I too hope your surgery is a success.