Another Poll - Bisphosphonates

What? - Zometa 4mg infusion every 6 months for 3 years

Why?- To prevent metastasis and help preserve bone strength (chemical induced menopause)

Edited : I said NO to the trial..

I finished Herceptin in April and just talked to my onc's nurse practitioner a few days ago. She had me on Fosomax for osteopenia, but I stopped taking it because I was hoarse all the time - could have been chemo or Herceptin, of course. Anyway - I asked about Zometa after reading about the studies showing that it offers protection from bone mets. She called me later to tell me that my insurance would cover Reclast. I begin in November.

I am on the Clodranate arm of the study, I actually meet with one of the Onc's involved in study., The phase 3 trials are to determine if all3 drugs work as well as Zometa. My Onc believes that the data will show that are as effective. I don't think much about this drug I don't have a lot of SE's that I am aware of I mostly blame them on the AI's.

I took it because I was concerned about recurrance and also becasuse I am consisdered young at dx (42) and wanted to preserve bone health.

My Dentist was not very concerned about Osteocrenosis of the Jaw and my blood work has been good.

I am considering enrolling in the phase 3 trial. It will be closing soon for a period of time to revamp some of the rules?-at least that's what the nurse in charge of the trial at the local hospital here in Ohio told me. They will reopen it once they are done revamping. She said I had up to 7 months post chemo to enroll which I will start August 24. My dentist informed me that the patients they are concerned about getting that jaw necrosis are patients who don't have regular teeth maintenance (i.e. cleanings, fillings, etc...) He said that people that have holes/abscesses in their teeth at the start are at high risk for jaw necrosis. He said that because I faithfully come in for cleanings and x rays every 6 months I would be at a low risk of developing this. So, I think it would be wise to make sure your teeth are in good shape before you start.

However, I have a 15 year breast cancer surviror who is an RN and now in research advise me that there are many dangerous side effects to drugs like boniva. I am waiting for her to get me info on these biophosphanates and after reviewing all the facts I will make a decision. My oncologist had no opinion about weather or not to enter the trial (cold like a fish!!) I need a new compassionate onc.. which I am working on. 

Sorry, I meant to say 7 weeks after chemo to get enrolled not 7 months.

My onc switched me from actonel for my osteopenia to zometa 4 mg every 6 months for 3 years to cover the osteopenia and cut chance of contralateral bc.  My original onc says he doesn't support that idea because the Spain study that supported this is not mainstream philosophy yet.  Have had 2 doses of zometa.  Had a bone density done and my osteopenia is worse but onc says he won't switch me back and that in 2 more years I will have to switch back anyway.  My insurance will only pay for the new onc and not the original onc so I'm stuck with what he has to say.  I'm hoping my osteopenia doesn't continue to worsen.

I am in the trial and was randomly selected to receive Boniva.

I do it, like one of our sisters said...I do it to make a difference and prevent a reoccurance. I need to know I did everything available to me to stay healthy.

I have had absolutely no side effects at all. When I asked the nurse what the most common side effects are and she told me..."If I tell you, then you will start to look for them when don't even exist, most pts do this" and you know..she is right..Its the old placebo effect. If I told you Boniva makes your face tingle...half of us would start to feel tingles. So, I just go along my merry way knowing that I feel fine, like majority of pts on these drugs. Preliminary data from Europe says the pills are comparable to Zometa....time will tell thanks to ladies like us!!

The info on the most common and less common side effects of the 3 drugs was in the informed consent package that they gave me to read and sign before I joined. I have pdf of it that I found by googling SWOG 0307 but it is scanned so I can't do find on it.

I've got an appointment with a nephrologist tomorrow for her to help me try to understand the implications of the raised creatinine level that Clodronate seems to give me.

I have a question:  If you have Zometa infusions for 3 years, at the end of 3 years do you take an oral biosphosphate or are you finished forever with that therapy?  

I'm a stage 3 survivor (4 and a half years) and also have osteoporosis.  I take Boniva and just asked my onc about Zometa.  She didn't want to switch me -- said the trials were too small and the Boniva would do the trick.

It's great to share info on this. 

Annaanne 

Thank you Orange1 and Annaanne.  It is good to know that I am walking a trail blazed by stong pioneers ahead of me.