Zometa.... How often???

I am calling all of you wonderful Women who are on Zometa to discuss your treatment plan on Zometa.

I have been on it now for a year of monthly infusions and now my new Oncologist wants to start weaning me off of it. He stated that "they do not know the effects of it long term other than a potential risk of Osteonecrotic Jaw. It is a very potent medicine and when used for osteoporosis, it is usually given just once or twice.

My schedule is to receive now every 2 months for 6 months and than every 3 months for a year and then re-evaluate.

I am just curious to know what others are doing and what their Docs have said about this drug.

It is so difficult at times like this when there are no straight forward answers and like many on this road, a lot is very unclear.

I appreciate your feedback,

Peace,

Diane

Report post

18 replies. Join the discussion

I have had 6 rounds of zometa (monthly) so far. I have not discussed with my Onc yet but I keep wondering the same things about this drug. I was told to skip my last dental cleaning. I think it is time to ask about how long I should be on zometa. I will let you know what my Onc has to say. I also worry about this drug.
mlm

Report post

I am on monthly infusions, but I have only had one, and that was after getting dx with bone mets. Dr. said I'll be monthly "for a while" but I don't know how long that means. I guess it will be determined by how long I keep on kicking!

Report post

I have been on Zometa for 8 years now. The drug had a different name back when I started, but I was getting once a month for years, then switched to once every six weeks and now I am on it once every 3 months. I have not had any jaw problems, but I too wonder how long??

They just do not know, since we are outliving their expectations, and we will keep on keeping on!

Report post

I have been on Zometa for 3 years. I started out once a month, then every two months and then every 3 months. At my last appointment with my onc I told him I needed root canal and so he canceled my treatment and told me he thinks every six months is enough. I had the root canal yesterday and my jaw is still intact. I still need to have the cap done but since that is not invasive I'm not so worried (paying for it of course is another thing).

I will be seeing my onc in two months. I do not believe every six months is enough (or maybe going from every 3 to 6 is too much of a jump for me). I will definitely talk to him about this.

So far I have not had any side effects and want to keep it that way. I don't think the doctors themselves know what is the right dosage.

Report post

I have been on Zometa since April 2007, and I am still getting it every month.

Report post

Hi Dianne,

I started Zometa in Feb of 2007 and was on it monthly until Feb of 2009. I was at my onc in the states and he said I should go to every 3 months. I am now back in Germany and my onc here agreed when I first got back, but I spoke with her last week and I think we are going back to every month. I have extensive bone mets and I have to say after skipping a month I have had a lot more bone pain and I just don't feel as well. Of course I also started Faslodex around the same time and for me it has flu like side affects, but I don't think the bone pain is from that.

It is so hard to know what to do when you have all this different advice. All I know is when having monthly Zometa my bones felt a lot better.

Hugs,
Cindy

Report post

I started Zometa with my first chemo in Feb 09, when the spinal mets was diagnosed and recieve it monthly. The first one really beat up on me but I've not noticed any problems since then. Thanks to the lovely people on this site, I learned about the ONJ and had my teth checked because of a fall I took. Everything seems alright.

I had not questioned the long term effects of Zometa, probably because I just started. I'll be following this discussion with rapt attention. The comments from all of you are very helpful. Thank you.

Report post

I have been on Zometa for 7 months. My first question was, how long do I have to be on this? Nobody wanted to give me a specific amount of time. After pushing the issue, it was explained to me that it is a lifetime procedure, so I am assuming that it means forever. I also questioned the effectivness of this treatment, and questioned how they were going to moniter the success. The answer was a diseased bone and a healing bone look the same. I am once again assuming that there is no test to determine if this treatment is working, which makes me very uncomfortable. The side effects that I have experienced with Zometa, were swelling of the ankles, shortness of breath, and a general feeling of muscles and bone aches. I refused my April treatment due to a major snafu of being scheduled with another Doctor, without my knowledge, and don't feel any different, for not taking the Zometa. This is the one area where I feel like I have the "gold card" BC/BS, and they are just padding the bill with these treatments. How can you inject this into my veins andf not know if it's working?

Report post

Diane,
When i was on zometa it was an every month infusion. After a little over a year i noticed some rough spots in the inside of my bottom jaw, yes it was necrosis. My dr. took me off of it and said i cannot have it again. The necrosis is MISERABLE. Ive had one tooth removed b/c of it as well as a portion of the bone. They really dont know if it will stabilize or just keep deteriorating, so we wait it out. Keep your teeth immaculate. Go get all of your dental work done before you start on it if you can and then keep up with the good hygiene. They dont really "do" anything for the necrosis unless its a last resort like mine was. I have an oral surgeon b/c the regular dentist, although awesome, just doesnt know what to do with it and even the oral surgeon just watches it and only does what is absolutely necessary and then he worries about it. Try to find someone in your area that has any knowledge about it. Most dont, the problem is just too new and everyone is in a quandry about it. Keep very close tabs on your gums especially on the bottom in the back, that seems to be where it starts for most people. good luck!!

Report post

I have been on monthly Zometa infusions since June of 2007. So far I have not noticed any adverse side effects, but how much of what I experience daily is the cancer, the drugs, old age Etc. :-) For now my onc is going to continue with the monthly infusions, but he does want me to tell him before any dental work and says he will stop it for awhile when that becomes a problem.

Report post

There are a number of research trails going on regarding Zometa. Some say that it's life cycle in the body is 10 years, so that means it stays in your system for 10 + years.

In Feb 09, there was a release that Zometa may also be a way to fight the cancer, not just heal the bone or prevent speading. My old onc and my new onc both say that they are discovering new things about it's tumor fighting abilitly everyday.

Here is an article about the Feb findings:

Zoledronic acid is normally used to prevent bone fractures in patients with cancer and to treat bone diseases such as postmenopausal osteoporosis; it is is marketed by Novartis as Zometa, Zomera, Aclasta and Reclast.

Some pre-clinical studies have suggested that zoledronic acid has antitumor properties, so the researchers decided to investigate the effect of adding it to the standard treatment for premenopausal women with endocrine-receptive early breast cancer.

For the study, the researchers recruited 1,803 premenopausal women with early stage endocrine-responsive breast cancer and randomly assigned them to receive goserelin (stops the production of estrogen) and tamoxifen, or anastrozole (an aromatase inhibitor normally used to treat postmenopausal women with breast cancer) with or without zoledronic acid. The women underwent the therapy for three years.

The primary outcomes that the researchers looked for were disease-free survival and recurrence-free survival, with overall survival as a secondary measure.

After a median follow up of 47.8 months, 137 events had occurred, with the following results:
The disease-free survival in the tamoxifen group was 92.8 per cent.

In the anastrozole group it was 92.0 per cent, with 90.8 in the endocrine therapy only subgroup and 94.0 per cent in the subgroup that also received zoledronic acid.

There was no significant difference in disease-free survival between the tamoxifen and anastrozole groups.

Compared to endocrine therapy alone, adding zoledronic acid resulted in an absolute reduction of 3.2 per cent and a relative reduction of 36 per cent in the risk of disease progression.

Adding zoledronic acid did not significantly reduce the risk of death.

There were no unexpected adverse events, these were within known safety profiles for the drugs concerned.

Women who received zoledronic acid were more likely to report bone pain (35 vs 25 per cent), arthralgias (24 vs 18 per cent), and fever (9 vs 2 per cent) than those who did not.

No documented cases of osteonecrosis of the jaw were observed.
The authors concluded that:

"The addition of zoledronic acid to adjuvant endocrine therapy improves disease-free survival in premenopausal patients with estrogen-responsive early breast cancer."

Writing in NEJM's Journal Watch, Women's Health, Deputy Editor Dr Andrew Kaunitz, who is Professor and Associate Chair of the Department of Obstetrics and Gynecology at the University of Florida College of Medicine, drew attention to the differences between US practice and the methods used in other countries such as reflected in this Austro-German study:

"Use of ovarian-suppression therapy rather than cytotoxic chemotherapy deserves comment. In the US, chemotherapy conventionally is offered to premenopausal women after initial surgery or radiation therapy for low- or intermediate-risk receptor-positive breast cancer; however, in other countries, ovarian-suppression therapy is often employed in this setting."

Commenting on the findings, Kaunitz wrote they:

"Suggest that good outcomes can be achieved with ovarian-suppression therapy and that addition of ZA [zoledronic acid] further improves outcomes."

"Antitumor effects exerted by ZA seem to promote beneficial results, both within the skeleton and at nonskeletal sites in premenopausal breast cancer patients who receive ovarian-suppression therapy," added Kaunitz.

http://www.medicalnewstoday.com/articles/138713.php

Report post

Another thing to keep in mind is that Zometa is hard on the kidneys, so it is important to stay well hydrated and avoid taking a lot of ibuprofen. Ibuprofen goes through the kidneys while tylenol goes through the liver.

Make sure the onc is taking Kidney blood work at least once a month. The things to look for is the results of Creatinine.

Report post

I have my blood work done every month because of that, the week before my Zometa.

Report post

I have been on Zometa along with Faslodex for 8 years. As mentioned in the above article I was also on ovarian-suppression therapy (lupron) until my oophorectomy in 2007. Everything has been going well until about a month ago when my right shoulder started really hurting and my brother and I self dx it as a rotator cuff problem. After an MRI, we have discovered a rather large metastatic lesion in the top of my humorus. VERY painful. I also noticed some weakness in my left femor along the rod they put in when I had my hip replacement. That showed up as necrosis in the bone around the entire rod. I have had radiation there 8 years ago, and also had the zometa all along.

Report post

when i was dx with bone mets I already had scoliosis and osteoporosis. That means that I have genetic bone problems. In fact I have been on some type of bisphos for almost 15 years. I have a bone test (urine)called n-telepeptide that tells me when my bones are going down hill, cancer or otherwise. To stay in good shape I have to take calcium, magnesium, silicon,vitamin D, and vitamin K in addition to monthly zometa. I have never had jaw necrosis and my bone mets are now recalcified. My oncologist and endocrinologist both agree that monthly is best. A parathyroid hormone and vitamin D level also is tested regularly. My oncologist won't let me take parathyroid replacement though. I will probably always stay on zometa.

Report post

I have osteopenia and so was on it for that every 6 months. Then the cancer went to my bones and my doctor immediately put me on it every month and said we will continue to do that because it will help slow bone deterioration but also because there is strong evidence that Zometa has strong anti-tumor properties.
I gather the cancer in the bones is not expected to be cured so I will remain on it unless there is some bad side effect that occurs.

Report post

i have been on zometa for 9 months and recieved it and faslodex inj. today. onc. said we would now go to every 2 months for a year and then every 3 months from then on due to recent reports of jaw problems. i have been having blood in urine also. she ran test on this today and results to follow next week. this is my second faslodex inj. only side effect is very very dry mouth for afew days. had dummness in areas of leg today after inj. no noted side effects from zometa. thanks

Report post

I have bc bone mets --also to retro-peritoneal area ("strandings") and axilla. Abdominal (retro-peritoneal) and axilla were well controlled by Femara (an aromatase inhibitor) from mets diagnosis in 2006 until this month. Now tests show ascites in abdomen and pelvis, and maybe bone growth, so am switched to Aromasin.
I took 3 Zometa infusions, with great hesitation as I had in the past year a lot of jaw pain (TMJ) and gum infection and tooth trouble. Went to 2 dental surgeons with expertise in Zometa, when I discovered that 5 people in my ABC (Advanced Breast Cancer) group had developed jaw necrosis.
Asked my oncologist, telling him I had heard JN was rare--he disagreed, said in his practice alone, 4 BC patients had developed jaw necrosis from Zomeda.

So I have not had a treatment since Feb. 007. Yet my dental surgeon said it will stay in my body for a lifetime (getting gradually less potent), so I needed to be careful with any dental treatment that might expose jaw bone. (Root canal is normally ok--I've since had 2).
I am very relieved to be off Zomeda and will not even go on a by-mouth bisphosphenate pill.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Advertisement

Advertisement

Discussion topics

Community leaders