I have an appointment with Dr. Lee this afternoon to discuss neratinib further. He is just back from the breast oncology meeting in San Antonio, and he should have information to share about neratinib from that meeting.
I've spent the morning reading through some of the info that readers had forwarded to me, and I got some useful information from the breastcancer.org neratinib discussion board. All of these women are getting neratinib in a clinical trial, and some are getting a placebo--that would be a drag.
Here's that link: Neratinib Clinical Trials
Several women taking neratinib have had serious problems with diarrhea, which is the Number One issue with the drug. Some 85 percent of women who take it get diarrhea. Some of them were able to bring this under control with immodium, or by cutting the dose, or both. Some weren't, and they really suffered.
Supposedly the problem goes away with time, but at least one woman still had problems six weeks into the drug regimen.
I didn't get any clear information about the possibility of liver damage, although it was mentioned, so I'll ask Dr. Lee what he learned about that.
And of course I need to get an update from him on how our application to get neratinib on compassionate use grounds from Wyeth/Pfizer is going. Last time we talked, they needed the original pathology report on my cancer, and neither of us had a copy of that. It's buried somewhere in the depths of the University of Washington Medical Center's archives, I'm sure.
I'm feeling better today, both physically and emotionally. Still moving kind of slowly, a bit low energy, but much better than yesterday. Hoping to take Connie for a short walk before I have to leave to see my doctor.
@ Jeanne Sather 2009.
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