Zometa

Hi Frankie

I'm ER+ and Her2+ and I'm set to have my first infusion sometime next week.  There is a lot of information on these boards from ladies that have started Zometa  I believe it is starting to be a standard form of care in the U.S. but Canada is a little behind the 8 ball.  You can also look at the "Living Beyond Breast Cancer" website and it has a lot of information Zometa on there too.  My onc was against it first, but I kept pressing him about it.  He told me that it may only make a marginal differerence, but like I told him, I am willing to take any marginal difference you want to give me, it all adds  up at the end of the day. I want to know that I'm doing everything possible from keeping this beast at bay.

Good Luck with you onc.  Tell him you know a lot of Canadain women who are taking it!

Frankie, my onc did mention it is good for people who have no hormone receptors...

Let-It-Be - my onc wasn't sold on it at first either, and gave the very reasons yours did. But the next time I saw her she had changed her mind somewhat - she said it has been shown to be good with aggressive cancers, and although she couldn't promise any benefit other than strong bones, at the very least she didn't think it would do me any harm. Did your Onc mention a negative side to it??

I know all the research is preliminary, but I was willing to take a chance. The problem is the big studies won't be done until it is too late for us to get any benefit. I cannot imagine them finding that it makes things worse. Anyhow, obviously it is your decision.  BTW, my Onc thinks the oral one would be as effective - that could be another option, then it is easier to discontinue if you get any bad SE's.

I just think if I didn't take it, and then the results came out that it gave a benefit, well, I would kick myself. They do monitor your kidneys before each infusion, if that is any consolation. But, you do have to be happy with your decision.

Let-it-Be

I'm currently on Zoladex every 3 months and taking Femara.

Let us know what you decide - Good Luck!

Frankie,  I'm going to jump in here just to say, I don't know.  Not much help at all.  I don't think it matters if you are ER+ or - or Her2 + or - , but I don't remember reading anything one way or the other.  I don't even know if it is given with Herceptin, but I don't see why not.  Hope others will come along here and chime in.  

Getting out and about does lift our spirits, even if it's cold.  Enjoy your trip to Mexico! G.

My onc isn't convinced about Zometa....I'm on Actonel and he feels at this point in time that it provides good benefits....since I am "gun shy" about the Zometa because I would have to be in the infusion room and that just makes me quesy to think about it, I have not pushed.  I had baseline bone density when I finished chemo and started AI's....and have them annually.....decline in bone density after a year on AI's....started on Actonel and bone density has stablilzed....last bone density was in December...I am osteopenic....

My onc wasn't sold on zometa either but oddly enough my dentist was. He said that the jaw issues were really rare, and he'd be more worried about me taking the biphosphonate if I had dentures. My reasoning was that while I sure don't want osteonecrosis of the jaw, it's not something that would ultimately kill me, whereas the breast cancer spreading to the bones would. At stage 3, the chances of the cancer spreading are about twenty times higher than the chances of my having jaw issues. So I was willing to take the chance on the biphosphonate (I"m in the clinical trial, on the daily oral pills) if it can lower my risk of recurrence.

Let-it-be & Gitane, thanks for responding to my Q.

Let-it-be- Yes I am at the J.C.C. in Hamilton. My onc is Dr. Ellis. Seems by the sounds of it we were both there yesterday. Although I get treatments out of Hamilton I live outside of Hamilton in a town call Port Dover (1 hour away). My treatments are on Tuesdays and I see Dr. Ellis the same day since I live 50 kms away. I know of Dr. Dhesy. After reading comments related to this posting I decided to discuss Zometa with him yesterday, as I am half way through my chemo treatments (yesterday was my last AC -4th treatment). I will begin Taxol (1 of 4) in 2 weeks. Herceptin will be added in my second dose. Dr. Ellis discussed and shares the same opinion as what Dr. Dhesy shared with you. He agreed and undestands that I want to be as pro-active as I can with this disease. He said that it was my decison to make but suggested that I review more literature. He quoted the same study as Dr. Dhesy mentioned. I will look for and read any studies that I can and I feel better that he has not denied a prescription (in the future). We will discuss this closer to the end of my chemo treatments. Also, he did add that the Ontario Cancer Board does not approve this treatment (as it is not considered to be a practise of "standard of care) with studies/trails still being in the works. So I would be require to pay out of pocket. I am okay with that. I read on another thread here on this website (Another Zometa thread) that another woman in Canada contacted Zometa Access and they subsized the drug 50 %. I think the full cost is $ 250.00 per infusion and she had to pay $100.00. Also, they will arrange for free a nurse to visit you in your home to adminster the infusion. Dr. Ellis said that he would arrange that the Drug Access Cordinator at the J.C.C contact me to follow-up with my private insurance company to find out whether Zometa is covered under them. If not, then I will go the other route with Access Zometa. Did Dr. Dhesy talk about this with you?

Edited to add: Costs of Zometa

Frankie

Don't all the bisphosphonates have this potential jaw necrosis SE? I'm somewhat confused...

Of course for Stage IV with mets to the bones the benefits are obvious, but still.

I have not read all the posts, sorry.  But I feel compelled to let you know that I sit here with 5 missing teeth caused by osteonecrosis of the jaw.  My mouth is a total wreck.  The rest of my teeth are loose and cracking.  I am not a litigous type person, but I am very angry by the lack of action by the drug company, so I joined a law suit against Novartis (manufacturer of Zometa) for not warning us in a more timely fashion, but, alas, recently found out that residents of Michigan are not allowed to bring suit against pharmaceutical companies. 

ONJ is, by far, the worst side effect I've experienced in over 8 years of mets treatment.  I believe that the cases thus far are just the tip of the iceberg, as Zometa is a relatively new drug.  Best of luck to all.   Judi

I am five years out and am switching to a new oncologist this week. He was a researcher on one of the Zometa trials. I am expecting after my appt. on Friday that I will be going on Zometa also. I've flip flopped about this decision and read so much on it that my head hurts. I even made an appt with a kidney specialist because my dad had kidney failure and a kidney transplant and I was concerned his disease might be hereditary. The kidney doc said my kidneys are good and Zometa was low risk by comparison if it prevents BC recurrence.

I've always had good teeth and gums. But when I mentioned I was considering Zometa, my dentist referred me to a periodontist for a full exam and preventive deep cleaning of the gum around one crown I have. The perio gave me a lot of reading info. Said he had seen about 7 cases of ONJ in his practice. Some were on oral Fosamax only, some on IV bisphosphonates, and one was spontaneous -- no meds.

He said to do anything possible to avoid ever having a tooth removed in the future. Get root canal or anything you need to save the tooth and keep it in the bone. And that I would never in the future be able to have tooth implants if I ever needed them. Besides normal brushing, gave me instructions to floss daily, use a rounded toothpick to gently clean around my gums daily, rinse with either Listerine or Crest ProCare 2 x daily to kill germs, and gave me an RX for a special fluoride paste to brush with. I was like, "Whoa! Tooth care overload. Are you kidding?"  But  dentist said the perio is overly cautious because of his ONJ experience. But even with all of that, the perio still said the decision should be made based on medical reasons, not dental. He felt the Zometa risk was low.

In my researching I was getting freaked out about risk and wondering if worth it for me, but then I found a retrospective study from MD Anderson that looked at patients who had had IV Zometa and then experienced ONJ. I forget the percentage, but it was relatively low.

I am NOT positive on this, but I think possibly the doses you get when Stage IV may be higher than what they give you as osteoporosis prevention. But I am not sure how the doses compare to what they are now giving for recurrence prevention. That may make some risk difference.

Sheri - I'm so sorry to hear your friend has this now. It stinks. We try so hard to choose the best options for ourselves and hope that it works out. I hope she has some other treatment options. Hopefully they'll find some ways of treating ONJ in the future. One person experiencing this awful side effect is too many.

I'll check back with you guys after my appt and see if I learn anything else new. Thanks so much for all the info you guys have shared. As always, I learn more here than anywhere else!!!!

Oh, Judi... I'm so sorry you have this SE. That's a reason to think twice, indeed...

Aredia, it seems, also has this SE, as long as other bisphosphonates (Fosamax and Actonel).

http://www.cancerhelp.org.uk/about-cancer/cancer-questions/about-bisphosphonates-and-jaw-problems 

No refuge

Thanks, Yan.  Oh well.  What's done is done.  Just wanted to address some who posted by saying that ONJ is generally not immediate.  Mine occurred after 6 years of monthly Zometa.  I quit taking it immediately.  If I had to make a decision now, I don't know what I would do.  ONJ is awful.  I believe, though, that they have changed for how long and how often one should receive it - since it has such an incredibly long half life.

Not a total preventative, but it is recommended by a European ONJ researcher that one use Listerine rinse (and ONLY Listerine) and Arm & Hammer Peroxicare toothpaste while using bisphosphanates.

Again, I strongly believe that the ONJ cases they've seen thus far are just the tip of a very big iceberg.  Make sure you discuss this with your wife's onc.  My own onc has drastically changed how often and how long he gives it.  Don't know to what protocol, but if your onc is not thoroughly knowledgeable, I'd seek out someone who is (perhaps email MM?).  I can't believe that someone's onc on this thread said that ONJ was a minor issue. 

Leaving the Zometa thread forever.  It is the one thing that totally upsets me.

Best of luck.  Judi