Roll Call: Anyone in the Phase III Trial of Bisphosphonates

I am also thinking of participating.  JustSaying, did you get a dental exam before you started?  I haven't been to the dentist in a few years and know that jawbone necrosis is something you need to watch out for. 

Also, maymom05, you do not know the drug you will be assigned to until you enroll in the study.  Also, although I know there is one study showing that zometa definitely works, my onco was not enthusiastic about just skipping the study and getting zometa. For one thing, she said it would be tough to get insurance to cover the infusions which she estimated at $800/per.

I'm meeting with my onco tomorrow and will get more info.  Thanks for starting the thread.

I'm participating in the trial & am receiving the Chlodronate.  Samiiam - they will provide a dental exam or if you have had one recently, as I had, my dentist just completed their form for me.

Maymom, like you I wanted the Zometa too.  They actually ask you right before the randomization which one you prefer, so I got my hopes up thinking that was what I would get, but no it doesn't work that way, unfortunately.  My onc & my PA said that all 3 of these drugs worked during the Phase II of the trial.  That the Zometa, because it is an infusion, has better patient compliance; therefore perhaps a better outcome.

I'm 3.5 months into the Ibandronate arm also.  I've had some issues with lg muscle pain & the arches of my feet ache when I stand up (need to get someone to massage them ;-).  These symptoms might not be from the Ibandronate as I've heard someone on another thread is having the same issues and was told it was from lack of estrogen (thanks chemopause).

Stephanie - my coordinator sends me the drug removed from the box - isn't she a sweetheart!  Sometimes that half an hour seems like an eternity; but boy does that first cup of coffee taste divine!

I'm lucky that I work in a laboratory and can perform all of my testing; I still have a $40 co-pay to see the onc each month .  I'm just glad that I could participate.

Donna

Started the Clodranate arm in October, no extreme SE's just stuff that is most likely from AI's.

The researchers say that all 3 products are working and they have had only one recurrance in 50 people. Don't know which arm she was on.

I'm glad you have made your final decision Alicia!

(I made the same) ~***~ cheers**~

I'm probably going to join the trial. I already signed the consent forms. I visit my dentist in about an hour to get the exam and check that he is okay with it. I owe so much to the women who participated in the Herceptin trials, especially the BCIRG 006 trial that found TCH was almost as effective at preventing recurrence and was much less likely to produce heart problems than AC-TH. So I wanted to join a trial if there was an appropriate one for me. There was another trial that I qualified for at the start of chemo but my onc and I agreed that one wasn't right for me. Too high a risk with too little potential benefit for Stage I. She says this one would be appropriate for me and I trust her judgement.

Hi all-

I am in this trial.  I will be getting the IV infusion of Zometa.  I get my first this week on 3/10.  I will keep you all posted.

Samiam40

You can start after chemo, I began after chemo about 5 weeks after completion.

Samianm, you qualify if you are starting within 12 weeks of surgery OR within 8 weeks of completing chemo. I had surgery in October and finished chemo 4 weeks ago. I'll be starting in 2 weeks (6 weeks after my last chemo treatment).

My oncologist told me about the study at the visit before my last chemo session. Since I said I was interested she had the information on the study mailed to me. I met with the nurse who coordinates research at my facility when I went in for my first Herceptin only treatment 3 weeks later and signed the consent forms. 

You need a dental exam before you start the study so you might want to schedule that. Fortunately I had already moved a dental exam that would have fallen during chemo to 4 weeks after so I was all set. 

I am not having any trouble with constipation, but I am having a lot of fatigue. 

Hi all.  I am also in this trial (Zomeda).  I finished chemo in November and started the Zomeda infusions in January.  I don't think I've had side effects (no bone pain or nausea) but I do feel run down.  Hard to pinpoint whether it's the new medication, the tamoxifen, lingering stress from the cancer experience, three teenagers at home, or what.  My oncologist suggested I take Effexor, but I'm really not sure if I want to add one more drug to the pile.  I've read some women have pretty negative side effects with Effexor.  Have any of you experienced anything?

I'm with mmm5  - I am doing twice a year Zometa like the Austrian trial.

Ladies,

Anyone on Clodronate and needing a replenishment within the next 30 days may not get them on time or when needed. There is a problem with production and hence supply. Not a long delay but may cause one to miss dosage.

take care, 

I started Clodronate in Feb 09, I don't think I'm having any side effects. I'm still getting used to my new body after chemo! It's a shift when your cells start growing again. All I want to do is eat.

I saw my oncologist for my 2nd chemo treatment yesterday, and she said I could start the trial now, before my chemo was over.  But then I read in the study literature that there was increased chance of bone necrosis if you got the IV zometa during chemo.  Did anyone actually start this trial during chemo?

Also, did anyone get their dental exam paid for by the study?  I don't have dental insurance and it would be nice to get a break on that.