Zometa

orange1

I've been seeing two oncologists (because I'm neurotic, I insist on a 2nd opinion on everything,)  Anyway Zometa for prevention of recurrance is the first thing they ever agreed on.  Both said there is absolutely no down side to this (except the cost, if insurance rejects.)

Insurance paid for the 1st infusion.  still waiting for the bill for the second infusion.  If I have to, I will pay for it myself.  I do not want this cancer back and am doing everything practical to prevent it. 

Re: side effects:  Ist infusion I felt absolutely nothing.  Second infusion - a little tired and sore, but nothing significant. 

Allyson - If I were you, I'd go get my teeth cleaned and then get infused.  By the way, in the study that showed 36% risk reduction there were no cases of osteonecrosis of the jaw.

 Good Luck

paige-allyson

lex and orange- thank you for the encouragement. I have a dentist appointment tomorrow morning and I plan to talk to him about it. I do worry about the possibility of a dental problem just cropping up unexpectedly once I started infusions. I had a problem come up during chemo, despite regular dental care and getting everything that seemed to need doing done before I started.

Maybe I should get all my teeth pulled and then do it. Yikes. Seriously I am going to pursue it with the oncologist. My next follow up is March 17. Maybe I should try to get started on this project sooner? Believe me I am not going to let dental concerns get in the way of doing something that could potentially save or extend my life! Paige (Allyson is a nickname)

Faith1

paige-allyson-

what I was told about the concerns on the dental side is there is a rare chance the bisphosphonate drugs can cause osteonecrosis of the jaw- meaning the drugs can kill the jaw bone.



They first evaluate you for bone decay on the jaw when looking to see if you are a good candidate for these drugs.



I have a lot of dental problems, need a root canal etc and that did nothing to disqualify me for using the drug. They also have planned checkups at the dentist to monitor my jaw bone to see if the drug is having any poor effects. So don't worry about your dental problems they are looking at your jaw bone.

JudyO

Just talked my onc today and we are condidering the zometa. He said to use caution when looking at the studies. The 34 % decrease is not 34 out of 100...it is was actually a decrease of 3 from 9 to 6 which is the 34%....I have a BS in math and work with numbers. So often the studies are presented differently depending on who is putting it out...He said he will put me on the zometa but so far he hasn't seen the data to support it.

lexislove

Thanks JudyO for clearing that up.

It is always confusing with the stats on %'s. I kinda thought the 34 out of 100 seemed kind of odd. Made me think if taking the Zometa is worth while.

Alicia70598

I just saw an endocrinologist at my cancer center, and he prescribed twice-yearly Zometa. It's a standard and very effective treatment for osteopenia and it's also the dosage used in the Austrian study. I prefer that course to the very high dosages in the SWOG study. 

BTW, I didn't realize the women had no chemo in the Austrian study.  

lexislove

Yes, the woman had NO chemo in that study.

But I would think, if one HAS had chemo the benefits would be greater. Maybe I'm wrong.....

paige-allyson

Faith- Thanks so much for the additional info! I have great dentists and am very confident about getting good monitoring if I am deemed appropriate for getting the treatment. I should be unless there is some jaw or other problem that I don't know about. Hope this goes smoothly because I REALLY want to get this (or any other treatment) that comes down the line for preventing mets. Paige

LindaLou53

My understanding is that standard dental cleanings, xrays and tooth fillings do not present a problem while on Zometa.  Even root canals can be done safely if there are no complicating factors.  It is actual tooth extraction, having dental implants installed or anything that involves cutting or damaging the jaw bone that should be avoided while taking Zometa and for some time after.  I have been getting regular dental checkups and cleanings every 6 months and annual xrays while taking Zometa for the last 2.5 years without any problems.

EWB

My oral surgeon (who has many pts in this situation) explained to me that having monthly infusions of Zometa will increase your chance of developing ON of Jaw by 25%, as opposed to none infusion Zometa, which is some thing like 3%.

Have to do whats best that this time.

paige-allyson

Linda-Lou,

Thanks for the additional info. It's not cleaning etc. that concerns me, it's the major stuff (things needing surgeries or extractions) which unfortunately I've been prone to. My dentist has been great about working with me on a pre-Zometa treatment plan to deal with risky teeth and/or gum areas BEFORE I (hopefully) get Zometa.

Husband11

What's your thought on the likelyhood of a Canadian woman getting put on Zometa by request after chemo, as opposed to entering into a study in which zometa is one of the three that you might get assigned to?  Is it an accepted enough substance that an Onc might prescribe it by request?  My wife is pre-menopausal and likely stage 3a as she is T2N2, 6/17 nodes, ER,PR+.

 I don't find the whole 36% reduction thing that confusing.  Lets say 36% means 6 women have recurrances instead of 9.  Well you could look at it and say, if 100 women had recurrances, with zometa, 36 of them wouldn't have had a recurrance.   But i do agree its good to know the actual risk as well so that you can assess whether its worth risking a particular therapy that might have a high % of negative side effects.

lexislove

Timothy,

I'm in Canada, B.C> actually and have been getting Zometa since June 2008. I am NOT in the trial. I applied with Novartis the drug company that makes Zometa for assistance. They approved to cover me 50%. So, the reimburse me the cost of the drug wich is $620.00 for the 4mg. Any more questions just ask

JudyO

Timothy...my understanding was that in one side of the trial 6 out of 100 had recurrence and in the other side it was 9 out of 100. I know I saw this discrepency when looking at the arimidex trial too. Often you hear a 25% decrease but if turns out to be 2- 3 % of the whole population. That is why often the oncs say it only has a small benefit over tamoifin. My onc said the drug companies and the places where the studies are done often let out the figures. I personally think that if it really was a 34% decrease it would be on the fast track and already be part of the standard treatment. With all this said I am still considering it because I have seen so many positive things out there. Also my husband is a dentist. I am very familiar with the jaw problem and I know it does exist. Many people have chosen to quite the biophosphates just because of this. Oral surgeon say it can be a nightmare.

Husband11

They are currently doing a phase 3 trial (MAC9) where they are comparing three bisphosphonates.  I'm thinking phase 3 trial means the drug is already proven to a certain degree and they are fine tuning things before fully releasing it as a standard treatment.  Makes me think it can't be that bad if the trial is now for women in stage 2 and 3 breast cancer.

Carol1220

Paige,

I would definitely discuss it with your dentist.  The risk is for jaw necrosis as I understand it.  i don't think periodontal visits woudl be bad  - although you might have to take an antibiotic before each visit. It might be worth pursuing.  Carol

Carol1220

Oops - sorry was responding to a page 2 post.  i have to catch up.  everyminute - did you say your ins. co. covered it because you had hyst/ooph.  I have too - is that significant? should I appeal - my Onc. office didn't even submit it. Thanks for any help, Carol

everyminute

Carol - my insurance covered it as a prevention of osteoporosis BECAUSE I have had a hysterectomy (which makes us more prone to osteoporosis and bone loss).  I would ask your oncologists's office to look into that angle.

Marian_Trehern

I will be starting the SWOG clinical trial in a few weeks. Wondering if anyone else is on it and how it is going. Just a little worried about which of the three drugs I will be getting, as I have not been assigned yet. I am hoping it will be Zometa, because that is the one I am most familiar with.  Has anyone been on Zometa and if so how are the side effects?  If I get put on Zometa it will be intravenously. Is anyone getting it this way and also wondering if there is more risk of side effects receiving it intravenously than with taking it by mouth? 

Celtic_Spirit

Marian,

According to my dentist, the oral biphosphates are safer than the injectables. There is a small percentage of people who develop osteonecrosis of the jaw from injectables such as Zometa and Fossamex; however, it's usually because they've had invasive dental work performed after the infusion (such as a tooth extraction). There is currently more data available about the efficacy of Zometa for cancer recurrence prevention. Perhaps that will change when the results of your clinical trial are reported.

EWB

The big risk is the strength of what you are getting by monthly infusion vs pills.  This increases the risk greatly.  Cleanings should be fine- its any kind of surgery where you are disrupting the bone that is the problem/concern.

sisterofsusan

Hello Everyone:

 I have been looking into zometa for a while now and I am very impressed. I am wondering if you have any recommendations for Oncologists in New York State or even better, Ontario Canada that are willing to write an off-label prescription for Zometa (for stage III cancer).

Thanks a lot!

everyminute

You shouldnt need off label though I do know some oncologists will.  You may be able to get it prescribed to treat or prevent osteoporosis.

Alicia70598

I think it would be difficult to find an oncologist who would prescribe a treatment that is not yet standard. I agree with everyminute. My endocrinologist prescribed twice-yearly Zometa for osteopenia, for which it's a standard treatment. For that reason, insurance is covering it too.

I think most women who have been through cancer treatments, especially those that induce menopause, would have bone loss issues to deal with, so getting Zometa for this purpose should be easy. 

Anyway, I have my first treatment tomorrow after work. Is there anything I should do to prepare? 

Carol1220

My Onc prescribed it for prevention of bone mets even though I do not have osteopenia.  The only issue is that I have to pay for it. Alicia,

I will be getting mine twice yearly also, had the first one in January with no side effects.  Good luck to you.

sisterofsusan

Thanks for your advice! Is anyone getting higher doses such as in the recent studies (for example 4 mg every three months)?  Is anyone being treated at the Sloan Kettering and getting Zometa?

Husband11

Not sure if any of you have seen news of this study that showed Zometa had a positive effect in post-menopausal women as well as the earlier Austrian study that involved only pre-menopausal women.

 http://www.cbc.ca/health/story/2008/12/12/zometa-cancer.html

Alicia70598

Hey Sister,

I'm getting treated at Sloan Kettering. So far they only do twice-yearly Zometa for early-stage cancer. In my case, it's primarly for bone loss, and it was prescribed by an endocrinologist there.

Alicia70598

Timothy, thank you for sharing that study. It was different in that it involved neoadjuvant chemo, to shrink the tumors in advance of surgery. But it's still reassuring to hear about about positive results.

For the Austrian study, although it involved pre-menopausal women, I think they were technically post-menopausal during the trial because of the ovarian suppression. So I future the results could apply to either. Does that make sense?

Celtic_Spirit

I'm receiving Zometa twice yearly purely as a recurrence preventative. I don't have osteopenia. I don't know how my onc justified it to Kaiser, but since she's on the board, I doubt they gave her much grief.