Neratinib Clinical Trials

Even if you get the placebo it good to be in the trial.  If the results are favorable i would imagine you'd be offered the drug.

I don't know, BUT my ASSUMption would be that they would do a final MUGA to make sure everything is still ok.  ;/ 

I'm still plugging along.... I don't think I have any SE. 

I've never had a MUGA. I get EKG's & ECHO's, but never a MUGA. Are they @ the same thing? I'm in until the end of the year.

Leighann - congrats on almost being done.

On my last MUGA I was curious as to the amount of Radiation exposure, on top of having the nuclear injection was compared to other X Rays and so on ! He said it was slightly less than a CT scan ! Has anybody else asked the question before ? As I know CT has a very high radiation exposure and I am concerned about this part of the Trial. It seems like so much exposure over so little time, on top of having had 5 weeks of left side Radiotherapy only 10 months ago. 

Sooo..  I am done with the pills and done with the MUGAs.    My usual onc was not there so I saw another doc and told him about the neuropathy and joint pain in my fingers and toes and he casually said, "yes, that is a big side effect of neratanib."  Hmmm no one else said anything about it.  Well, the study coordinator asked if I was dropping things or having trouble walking.  I guess just to find out the severity of the neuropathy.  I actually did have a few days where my feet were pretty sore and walking was not so great and I could not buy a pair of shoes that had a thick band across the top of my feet because they Hurt!  I was weird to go to bed last night without taking the pills.  I have a mammogram next week.  always a stressful thing..  Best of luck to you all.  feel free to PM me if you have any ???'s  I probably won't check back as often.

I will complete #18 Herceptin on Oct. 22 and am interested in the Neratinib trial.  I spoke to a man at Pfizer Friday and will talk to my onc about it Monday.  I am planning on reconstruction in November.  Does anyone know if reconstruction can be done while taking Neratinib?  Also, seems like a lot of radiation exposure especially if one gets the placebo and not the Neratinib.  The echo is done by ultrasound and shows the ejection fraction just like a MUGA.  Not sure why most oncs order MUGA's over echocardiograms.

Hi heathermcd Im thinking you mean results out of this trial meaning, Is there any one known to of had brain mets while on the trial and taking the real deal ! Fair question I guess ! Im only 3 wks in so maybe one of the other gorgeous gals out there might know any early stats ! also not familiar with the vaccine trial ! I am sorry to hear you are only 28 and having to deal with this crap in your life, but theres heaps of support out there from us older chicky-babes, which I hope you have had already

Geewiz,

I quit the trial in July for too much bad side effect.  Now  something like one month and a half, I'm still there.

You can go down up to 3 pills and still have the benefits of the drug.  My onc agreed that 3 was the magic number for most of his patient.

This is a trial, you may learn in a while that there is no benefit to it (like recently for another promising trial) and then regret all this time passed in the bathroom .

At the next San Antonio meeting in December we should have new statistics release. That will be intersting reading.

Hi to all the new gals & those thinking of becoming a new gal.

 I am 8 months in now. Was a struggle at first with the D, but kinda know what to avoid now to keep it at bay. Still there are days that I just say...screw it, I want some of that....and eat it anyway knowing it will cause D. Those are the only days I have to take something for it. I'm still on the 6 pills a day and have been from the beginning.

 I am starting to have the dropsy's every once in a while. Not that I feel numbness, in the hands or feet, I just don't know that I'm even letting go of something till it's on the floor. I should finish the trial in December. I started 2 days before Christmas last year so it will be my Christmas present to myself to be off it by this Christmas.

Good luck to everyone & I hope what we are doing makes a difference. If not for us, then at least for all those in the future. I truly believe we are helping future generations one way or the other. If it weren't for the gals who did the Herceptin trial I wouldn't be here right now. So I want to do my part to hopefully give that chance to someone in the future.

I have the up most respect for each & everyone of you. You Rock. Good Luck & God Bless !!!!!Leisa

Thanks, That's a friendly little squirrel I have in my front yard. He just layed there and let me take as many pics as I wanted.

caroHi Go for it girl, Do the tracks, its worth it, and welcome, I am geographically very fare from the US but emotionally very very close to them... XOX

Well, seems your mother will be in a brand new trial!  120mg is 3 pills, it is what is the best dose to cope with sides effects.

I wish her luck with it!  She is lucky to have you on her side.

I was given the info for this trial this morning.  I'm going to read over everything this weekend, but my initial reaction was "heck yeah!".  Anything that might help......getting a little nervous with all of this talk of serious D....doesn't sound like fun.  Sitting in the onc's office this morning, I thought, "I'll bet there's a thread on bc.org I can read to help me decide."  So I'll be catching up with you all before I give the onc an answer Tuesday morning.

Hi ladies.  A couple weeks out and I did not have major D during this trial but I definately notice a difference now ~ Major constipation!!    Neuropathy MAY be improving.. still have a bit of joint pain in my feet when I first get up in the am.  Good luck all.  The new trial with 3 pills sounds good.  Wish I could have gotten on that one and Know for sure I was on the drug.