lorbrena

It’s not so good, guys. Two consecutive months of normal tumor markers is amazing and more than I could hope for but the cost has been high – and not…

Every morning I take the lorlatinib that is keeping my cancer from growing. It has a slew of side effects including raging cholesterol so I also take rosuvastatin (a hydrophilic…

This one is good. My lorlatinib instructions are to take 4 25mg tablets once per day. I thought that was weird since I know they make a 100mg tablet. What’s…

Today is my seventh day taking lorlatinib and my fourth day back at work. I could have returned to work earlier but Good Friday and Easter Monday are public holidays…

I spent three days on the road with less than a 12-hour turnaround in Austin and arrived home last night with a month’s worth of lorlatinib. Victory! I took my…

The dramatic increase in my blood tumor markers this month was not a surprise but was a bit concerning. Combined with the massive increase in size of my brain tumors…

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…

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…