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Old 10-05-2011, 09:35 AM   #5
tarynrose
Junior Member
 
Join Date: Sep 2011
Location: My family and I live in GA.
Posts: 2
Re: Anyone tried Neratinib?

Charline, I am so glad to hear from someone else currently on the trial. I would agree that some foods make the diaherra worse at times but anything I eat results in fluid. I do not get blisters on my fingers but they do crack and bleed all the time. My nails are very brittle but they have been sence chemo. I have blisters in my mouth as we speak and my gums are often very tender.

I have a lot to say about surgery while on this drug. While on the drug I had a hestorectomy (April 13). On June 16th I ended up in the hospital due to the fact that the cuff did not heal right and 8 to 10 inches of my intestines exited my body. On Sept 29th it opened again and I am currentely healing from yet another major surgery. Three in 5 months and I am on restrictions this time for 6 months and in a signifigant amount of pain. This drug is a chemo and we know chemo compromises our ability to heal. I cannot tell you what to do but if you can wait I reccomend that you not take any unnessary ricks. My doctor said my body is struggling to heal and that I need to be very careful. She does think that the biggest reason for my issues is the stop in estrogen. It has made my tissue thin and brittle. I hope to that it goes in the books so that other women and can make informed decisions. Good luck and keep me posted. I am very curious to what and how this drug is affecting others.
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Infiltrating Lobular Carcinoma, Grade 1, and Lobular Carcinoma IN SITU, stage IIA, 7cm, ER+ PR+ HER-2 (3+) 1 of 7 nodes positive. 6 chemo of TCH (taxotere, carboplatin and Herceptin) 52 Herceptin, Double masectomy, clinical trial for Neratinib.
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