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Sandy in Silicon Valley · 09-05-2007, 05:46 PM

Hi,

I have metastatic bc, so for me, the cat's already outta the bag, and I'm on Herceptin plus Tykerb b/c the Herceptin seems to be still keeping my mets stable from the neck down, while I've had 3 brain mets, and the Tykerb seems to have a better shot at keeping any more from growing there.

From my point of view, I would NOT take Tykerb as a preventive drug. It is NOT, for me at least, easy, like Herceptin (other than that it's in pill form rather than requiring an infusion every 3 weeks. I have an insanely itchy scalp sporadically, muscle cramps, diarrhea that keeps me within 50 feet of a bathroom at all times some days, and a rash that looks like acne on my chin. Plus, it's ungodly expensive, still quite unproven longterm (the Phase III clinical trial was, I think, only held over 1-2 years) for either effectiveness or cumulative damaging side effects. If I didn't fear multiplying brain mets and having to undergo whole brain radiation and/or an Omayya Reservoir to pump chemo directly into my brain, or if I had to pay for this drug out-of-pocket, there'd be no way I'd compromise my QOL by taking this med.

Just one HER2neu+++ bcmetster's experience - others' mileage may certainly vary...

Sandy in Silicon Valley

09-05-2007, 05:46 PM	#5
Sandy in Silicon Valley Senior Member Join Date: Aug 2007 Location: Silicon Valley, CA Posts: 76	Lapatinib/Tykerb as preventive treatment... Hi, I have metastatic bc, so for me, the cat's already outta the bag, and I'm on Herceptin plus Tykerb b/c the Herceptin seems to be still keeping my mets stable from the neck down, while I've had 3 brain mets, and the Tykerb seems to have a better shot at keeping any more from growing there. From my point of view, I would NOT take Tykerb as a preventive drug. It is NOT, for me at least, easy, like Herceptin (other than that it's in pill form rather than requiring an infusion every 3 weeks. I have an insanely itchy scalp sporadically, muscle cramps, diarrhea that keeps me within 50 feet of a bathroom at all times some days, and a rash that looks like acne on my chin. Plus, it's ungodly expensive, still quite unproven longterm (the Phase III clinical trial was, I think, only held over 1-2 years) for either effectiveness or cumulative damaging side effects. If I didn't fear multiplying brain mets and having to undergo whole brain radiation and/or an Omayya Reservoir to pump chemo directly into my brain, or if I had to pay for this drug out-of-pocket, there'd be no way I'd compromise my QOL by taking this med. Just one HER2neu+++ bcmetster's experience - others' mileage may certainly vary... Sandy in Silicon Valley