Verwon Says:
Prospective Patient
Updated
Jim Says:
My MOHS surgeon, my oncologist, my neck surgeon at University Miami School of Medicine Hospital all suggest Erivedge, but are not patients themselves and have limited experience. 78, 40 years of Basal cancers, denial, new nose. Now have bleeder spots on the nose and won't have more surgery. Are Erivedge side effects life style changing? I would like to talk to other patients. {edited for privacy}
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Hello, Jim! How are you?
I've not taken it, but I can provide you with information on the side effects, as provided by the FDA.
It is most commonly used to treat BCC and its typical side effects are listed as possibly including nausea, vomiting, diarrhea, decreased appetite, joint pain, muscle spasms, weight loss and decreased sense of taste.
Can anyone that's taken it chime in?
When my dad had BCC several years ago, it took several surgeries, before they were able to get all of it.
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Jim Says:
Thank you for your reply. I am well aware of the FDA party line. I want end user facts. How hard is it to find users. Apparently very. Genentech is deliberately misleading and obtuse. ACS, too political to opine.
Jim {edited for privacy}
We all live downstream.
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Linda Says:
I took Erivedge from 2/15/11 (part of original clinical trials) to 1/1/13. I do not have Gorlins but have been dealing with multiple basal cells for 30 years. The drug cleaned everything up within 6 mos, but the doctors insisted I'd need to remain on it for life. I finally quit because of the side effects, all of which reversed within a few months, other than the hair loss which appears to be pretty permanent. One of the BC's returned after a year but was resolved with Aldara. Apart from the hair loss (which is devastating to me) the worst side effects were weight loss and muscle cramping. The drug works, but if someone had told me I'd be mostly bald for the rest of my life, I wouldn't have taken it.
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