Roll Call: Anyone in the Phase III Trial of Bisphosphonates

Hi ladies,

My onc took me out of the study.  My esophagus and stomach are so irritated from the clodronate that I can no longer tolerate it.  I have been off for about a week, and I feel so much better.  I was off for two weeks and tried taking prilosec to improve.  It actually worked, but only after a week back on the clodronate I was worse than before.  I only made it 10 months on the study.  Good luck to all of  you! 

Sorry you have to leave the study, sunandsandgirl.  But it must feel good to have your stomach and esophagus heal!

Lorrie 

Oh yea bisphosphonates can do that. I get bone pain for 1 week after each Zometa.

I am not on the trial but have just had an infusion of Zometa for prevention.  However, the SEs have been more than I thought -- very achey (sp?) all over my body and a very uneasy stomach.  It has gotten better but now I have felt unwell for 6 days.  I would like to take it again in 6 months but dread the SEs.

Jo Anne

The enrollment in this study will close effective Feb 1.

That will take at least 5 years maybe longer.

My doc said that sometimes the results are so positive that a position comes out very quickly and that's what he's hoping for with the bisphosphonates trial.  I'm keeping my fingers crossed too!

Lorrie 

Looks like am on the Zometa arm of the trial.  I will be starting on Tues. and will let you know how it goes.  

Hi Joann (jap)...I had my first Zometa last Thursday and my gosh, the SEs for me were much worse than Neupogen (the nurse told me to expect them to be similar to the SE on Neupogen, just not as bad).  I was convinced I would glide through and Friday was like I hit a wall...I could not get out of bed until noon and mustered all I could to shower and get my hiney into work. Saturday was pretty much a continuum of Friday, but thankfully I started to feel better Sunday and Monday  then last night I was aching again and could not fall asleep (I could not get comfortable in bed even after a long soothing shower) until around 3 am.  Today I feel like I have taken a couple of steps back. 

 I am deeply appreciative to have qualified for the third arm, but having finished chemo on 12/10/09...continuing with weekly Herceptin until September 2010 (they insist on weekly Herceptin vs. 1x every 3 weeks...the diarrhea lasts about 4 days...just when things start to feel normal, I get another Herceptin). I am starting Rads this Thurs the 4th, and am now worrying that the Zometa may be too much for me to handle at this time?  I know that the Zometa has to be started by the 12th week following final chemo...and they were in a rush to get me going.  I will see how I feel after Rads start and then decide if I should give a 2nd shot of Zometa (I hear the first one is the worst for SE...if that's true, that would be wonderful!). 

Anyone out there that has had their 2nd plus IV of Zometa care to share if the SEs abated a little, relative to the first one?  Do the SEs lessen with each IV?

Thanks...

Frosty

Welcome! 

I also started the Zometa arm in October and have had four treatments since then. With the first one, I had the flu symptoms. Chills, body aches and fever. That was on Halloween- the day after my first infusion. The second treatment, I had a few body aches. Not nearly as bad as the first one. The third was much better. Some minor aches. This fourth treatment, I have had no side effects at all. So, yes, mine have gotten progressively less with each one and none with the last one. Hopefully that will continue.

I've had no trouble with my taste buds at all since I got them back after chemo.  

Dear Sanaisa,

The body aches are getting milder with time. The 4th dose of zometa caused me only 1 day of very tolerable pain.

Hi All...just a quick update to say that Zometa Intravenous #2 was literally uneventful!  I was terribly worried to have #2 after #1 being heavy with SEs.  I am glad I trusted in my Onc and all of you...you were right...the first one is the worst and hopefully the remainder for close to three years will be as uneventful as #2

I just had my second infusion of Zometa yesterday, and am feeling icky today.  Fever and body aches.  I sure hope things get better as time goes on, I can't seem to get comfortable with a sore back and chills/fever.  I'm glad I read this thread; I didn't connect my symptoms with the zometa infusion for some reason!  So I'm less worried about why I feel so bad.  Thanks!  

Hi ladies,

Thankfully I have had no se's from the Zometa infusion.  I am wondering what tests are your onc's asking for as part of the trial.  So far, I have had blood work.