Tuesday, September 25, 2012

Life is all about choices

This has been an insane week. I'm still reeling from the news about my desmoid that is shrinking and growing at the same time. I hate the little bugger. I've always said the tumor mimics my personality. It's stubborn, indecisive and when there's an obstacle put in the way, it found away around that. The people who took a few minutes to send me comments on my last two blog posts, have made a difference. It's nice to know I'm not alone. So where are we right now? Where do we go from here?I'm in a unique and awkward place. My Nexavar (sorafenib) is working but not 100%. There either isn't a way for the drugs to travel to the tumor that is growing OR the drugs worked but it mutated and found a way to grow despite the drugs. I told you the tumor was stubborn! So I have a two-step approach.Part one is to do some additional testing. I had my tumor stained to see if it had hormone receptors. Mine does not, so hormonal drugs aren't really an option. I'm going to do have FoundationOne test my cells. They type the tumor to see if there are any targetable mutations. The company then suggests drugs that targets that mutation. The catch is that just because your tumor has a mutation that a drug will target doesn’t mean that it will definitely respond. Tumors are smart and figure out ways to bypass options that are shut off with drugs. The second step is to pick a new drug. There are four choices we are currently exploring. Hydroxyurea, Pazopanib, Doxil and Eribulin. Hydroxyurea and Doxil have more documentation about testing for desmoids and are more likely to be approved by insurance. Pazopanib is like Sofefanib but it has a little broader mechanism of action. I'll blog more about my pros and cons. I wish there was more research or clearer answers. I'm sure the Big Guy has a plan.

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