Neratinib Clinical Trial

TSund · 01-03-2010, 09:05 PM

Kriss,

Ugh. Hang in there!

Kind of an odd "blind" trial when the side effects are so evident. Did you react upon the very first dose? How many doses did you take?

Wishing you luck,

TRS

KRISS · 01-08-2010, 10:56 AM

I took the 1st dose at bedtime and the symptoms started first thing in the morning. By the 3rd day it was unbearable. They started me again on Monday and dropped my dose to 200mg. I started the lomotil at the same time. this time around it is not as bad but still not great. The diarreah started immediately but only maybe 8 or 10 times a day. I changed my diet again using some of the guide lines Steph had tried and think it is all helping. I feel very fortunate to be part of the trial and am pretty confidant that I am getting the real thing. But honestly I am just so pleased that I can give back or pay it forward. I know without all those brave women that were part of the herceptin and many other trials I may not be here to do this. So I will take the diarreah and all the other stuff. Have a blessed day ladies.

KristyAnn · 01-08-2010, 12:10 PM

Kriss,
I started the trial on Oct 7 and have the violent side effects like you did AND I ended up with severly depleted potassium and magnesium from the diarrhea. They found all that at my 1 month appointment and I spent the next two months trying to get potassium and magnesium back to normal and going through dose reduction.
I reduced to 200 mg and have almost as violent a reaction as the 240 mg, uncontrollable diarrhea with lomotil and immodium and still had problems with potassium and magnesium.
I got reduced again to 160 mg and it has been a WORLD of difference- I think we finally found a dosage my body can handle!!!!!

Talk to your nurse if it is still that bad- she should have the guidelines to get you to a dose that is tolerable!

Kristy

KRISS · 01-08-2010, 02:20 PM

Wow, at least I know I'm not alone. I have my 1 month on the 18th and am very interested to see what my levels are. Will the increase your dose again after some time or will you always stay at the 160mg? I would find it ineresting to see if the body starts to tolerate it. Thanks for sharing Kristy Ann and good luck to you!