Wednesday, December 12, 2012

A Momentus Day

Yesterday was a momentus day!!!!!!!!!!!!!!!!!!!!! For the first time since May 4th, I feel like I made my mom proud.

On Dec. 11th, my phone rang. It was Dr. A's office. I immediately knew that it was the appeal decision. Before I even answered the phone, I had this wave of calmness all over my body. I knew deep down it would be good news. And it was! Dr A's nurse happily told me the great news - we were approved for off-label usage for crizotinib (xalkori), the lung cancer drug we've been trying so hard for. Dr. A and I went head to head with the insurance company for weeks. We spent hours pouring into the c-met research, sending correspondence back and forth, getting even more in-depth research when we were initially denied and then worked hard to appeal the decision.  I am elated that all the work we did paid off.  The next step is working out all of the details. It's been officially approved but now it has to be dispensed which in itself is a process. We have to go through a specialty pharmacy, submit co-pay and get all the necessary paperwork filled out.

Now I hope the drug works...it is the first FDA approved c-met inhibitor drug making it weaker than what's being tested in current c-met trials.

I'm not taking a backseat either just because this was approved. We're working just as hard to get another FDA approved drug called cabozantinib approved as well. This drug is more powerful that crizotinib. Gotta have options.

In addition, I've also been pursuing another treatment option for mom down the road. It's on the back burner for now but we're getting the ball rolling on it. She's a candidate for a small pilot program at Mayo Clinic - Center of Individualized Medicine. More to come on this - we are voyaging down there next Wednesday to meet with the program director and surgeon.


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