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Old 05-18-2010, 08:55 AM   #75
KristyAnn
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Join Date: Nov 2009
Posts: 11
Re: Neratinib Clinical Trial

I am approaching 8 months on the trial and I am definitely on the drug- had to be dose reduced twice to get to a tolerable level. My doc sees the side effects as knowing you are on the real deal but the lack of side effects - she makes no conclusions since some people are lucky and dont have the problems.

I have found eating a cheese stick- mozzarella- daily helps with the diarrhea- doesnt make it go away just less volatile. I avoid dairy except for the small amount of cheese but I have stuck with my regular garden type diet which is pretty high fiber- I do think it causes more problems but I couldnt find what I would want to eat for a year with my garden producing all kinds of good things - so I tough it out. I seem to be in a pattern of having a bad side effect day every 7-10 days- like my body tolerates it as well as it can and then falls apart for a day.

I keep immodium with me and some other small pill you put under your tongue to stop abdominal cramping- use as needed which is only about once per 7-10 days.

I am definitely counting the days until I am finished (Oct 6, 2010 is my last day BTW)

Kristy
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