Cancer Survivors Network

congrats on finishing your chemo and being almost doen with rads. i dont know much about it but my onc mentioned it says its worthwhile because it can reduce your chances by 30 percent which in his book is a great stat. i think I've read about other people on this who have received it/

I just had a recurrence in my ribs after a remission of 22 years. I am now on zometa (IV bisphosphonate) and arimidex. The study makes sense and I wish I had had the option. It sounds like a study that could be helpful. Good luck with whatever you decide!

Hi Julie, I'm so glad you asked this question. I am also finished with chemo and am on day 15 of rads. My oncologist's office called today to schedule an appointment so I can come in to hear about this trial too. They didn't want to give me all the details on the phone (that's what the appointment is for!) but I was able to read a little bit about it on the National Institute of Health website. I was a little worried about the side effects too. I don't see her until the 24th, but I'd love to hear anything else you learn.

Thanks for the comments so far everyone!

I am...

I am in the Boneva arm (okay most likely spelled that wrong)... and I haven't had any side effects.. LOL.. at least that I have noticed. I started on the trail when I was still on chemo and I just finished rad last week. The only thing is you have to have some extra blood work.. after all we been through that's no big deal....

I think its a great trail.. and hoping it proves effective.. let us know if you take part.. and what arm you get..

I am in that study. I took 1600 mgs. of clodronate for three years(finished in June). I really didn't have any side effects. However my blood counts were still low 7 months after chemo. My onc thought it was the clodronate and took me off of it for 4 weeks. My counts went up and I went back on the drug.

All in all it was ok. It offers a little more protection I think. Apparently, it creates a hostile environment for cancer cells in the bone marrow. You should be aware of the risk of developing osteonecrosis. I googled it and couldn't sleep for 2 nights. But it is mostly seen in patients with poor oral hygeine and those that get a lot of invasive dental work.

I was just asked to go on the clinical trial 3 wks ago and need to let my oncologist know this week; It sounds interesting; Anyone have any trouble with insurance paying for the extra labs etc???

Thanks
Linda T

I haven't seen you post in a long time, so, it is good to see you back on. I haven't been on too much myself, but, smiled when I saw your name. The study sounds interesting. Let us know what you decide to do and good luck to you!

Love, Jeanne ♥

Thank you so much for posting the info about the study. I immediately contacted my 2 sisters who are also battling breast cancer, but are both in remission. They are too late for the study, but since both are post menopausal and bone density is an issue, they are going to try and get on a bisphosphonate. Who knows, your post may save them from the bone mets that I am fighting. Wouldn't that be something?!

I completed chemo on May 6th and was asked to take part in the Trial. I read everything I could on the subject and was almost ready to say no, when I met a woman in the radiation waiting room. She had been in remission for ten years, when it returned as bone cancer. That convinced me to take part in the trial. I had to have a dental exam before they would accept me, and that came back fine. I was randomized into the Zometa arm of the study. I still had my port in, so all of my blood tests and infusions have been through that. I'm having the last monthly infusion on the 18th of this month, then I go in on a quarterly basis for the next two and a half years. I haven't had any real problems with the Zometa other than some bones aches and pains for a few days after the infusion. My biggest problem with the study was going back to the infusion clinic for the infusions. That was a bad de ja vu (spelling), but the nurses and techs have been great and they all remembered me from my chemo days. I'm very glad I am in the trial and I think if you have the opportunity to do this, you should. Please let us know how things go, and which arm of the study you are in. Best of Luck! Connie