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Old 02-18-2010, 10:48 AM   #1
Laya6680tx
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Join Date: Feb 2010
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Re: Neratinib Clinical Trial

Hi Ladies,

Just wanted to get into contact because I recently started the Neratinib trial (7 days ago) and have also experienced severe side effects. Dehydration to the point that I had to leave work on my second day of a new job to get IV fluids from my onco nurses.

I was told to stop taking the pills until my stool is back to normal, then I will start taking 5 pills instead of 6. Initially my onco had me inject myself with an anti-diarrhea med because the Lomotil and Immodium did nothing to stop the floodgates after they were opened. Apparently, this injection (which stopped the diarrhea completely), isn't something they are using on the study to treat the side effects. So, I must start lowering the dose.

As it is, I don't eat meat; I cut out all dairy before I started because I was told what it may do to my system, so as far as diet goes, I'm pretty much existing on rice/beans and fruit. I understand how the anorexia side effect may become a problem. Hopefully, on a new dose, things won't be so bad.

Any dietary suggestions are appreciated Thanks!

~Bethany
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Dx: 6/08 at 27. 1.8 cm, 0/3 nodes. Triple positive, BRCA negative.Tx: Lumpectomy. Chemo TCH, 35 Rads, Tamox & Zoladex. Currently on Neratinib trial.
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Old 02-19-2010, 06:16 AM   #2
KRISS
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Re: Neratinib Clinical Trial

Hang in there Bethany. I did well on the 5 pill dose and in fact going to ask to go back to that. Tired of feeling "not right". The GI system is constantly on the go making noises and causing discomfort. Oatmeal has become one of my favorite things. I seem to keep it in my system longer than anything else. Keep us posted. I was feeling normal within 48 hours of stopping the drug so I hope you are too!
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finished 2/18/08
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