Lorlatinib Update: Lots of Activity, No Real Progress
A quick update on where I am on securing lorlatinib. I have a couple of parallel streams going but neither seems particularly promising. Just a reminder that I don’t qualify…
My experience with crizotinib, lorlatinib, and more
A quick update on where I am on securing lorlatinib. I have a couple of parallel streams going but neither seems particularly promising. Just a reminder that I don’t qualify…
The PET-CT results weren’t nearly as bad as expected given the dramatic rise in tumor markers in my last blood test. Overall, it looks fairly steady since the Jan 30…
Here’s where I am in the mad dash to find the next treatment for my quickly growing brain tumors: Plan A: Lorlatinib Trial in Boston The advantage here is free…
It’s not really a surprise since I can see and feel my tumors grow, but my oncologist confirmed today that I’ve officially had progression while on crizotinib. I’ve developed resistance.…
Brad and I have spent the past couple of days mulling over the advice of the oncology team at they Mayo Clinic to stop taking crizotinib and move to lorlatinib.…
I just wrapped up two consecutive ten hours days at the Mayo Clinic. I’ll post an update about the entire carnival of medicine later but for now here are the…
First off, how ’bout these cell phone stock photos, eh? Second, Brad and I nailed down the details on our plan for handling Xalkori and related costs moving forward. Read…
So the Xalkori has been amazing and I’m so grateful I’m one of the ~70% of people with my mutation who are responsive. I should be able to continue progression-free…
Recovery from the brain radiation was a little slow but I’m just about there. I’m still sleeping a lot but have started weaning myself off the anti-vomiting meds. I’d ordered…
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