Neratinib Clinical Trial

[vlcarr]

I finally looked at where these trials are being done and they are doing this trial where I'm being treated. I'm going to talk to my onc when I go for my final chemo on 01/28. I will finish herceptin in June.

I don't know if I could do this or not since I did the Tykerb trial. Part of me says yes, but the other part says no.......

I had the potassium problem on the Tykerb but really didn't have the diarrhea issue that most people experience.

If I can do this one I know I feel torn about wanting this to all be over but also wanting to do what I can to help others and to avoid recurrence.....

My tumor was Grade III, and on some paperwork my onc did for my employer she said this about prognosis, "Tumor features are concerning for a very high risk of distant relapse". When I asked her what my odds are for a recurrence she said 15 to 20%. My FISH score was 6.31 (the report says HER-2/CEP 17 ratio) and I think someone her told me that is my FISH.

I've had severe stomach issues while on TCH and am so looking forward to those being gone and have not been able to work at all due to the side effects. I still have 6 1/2 weeks of radiation that will start around March 1st. I also realize I may not get the real thing if I do the trial. I was able to work while on the Tykerb trial.

I also could not afford to not work. I'm very fortunate that I've been able to keep my paycheck coming because so many people at work donated their annual leave to me. I received over 700 hours of donated leave through a program we have called leave sharing. I have over 25 years with my employer and traveled all over the country so a lot of people know me. I also joined another program we have called the leave bank so I can get an additional 240 hours from that when my donated leave runs out.

I know no one can tell me what to do but the point of my rambling is to ask those of you who've been fighting this battle longer than me for your opinion.

I had such great results with the Tykerb trial. Am also wondering if that would exclude me from this trial but they seem to be unrelated.

Wishing I had a crystal ball........