Medical Updates

We’re on vacation in Guilin, China, but I just got a call from my oncologist that they finally have my compassionate use lorlatinib! Actually, they called to tell me that…

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…

As expected because of my crizotinib resistance, blood cancer markers are still shooting up. Date CA 125 CA 19.19 Normal <= 35 <= 26 16 Oct 158 163 16 Nov…

The prep for stereotactic radiosurgery is pretty comprehensive. It involves molding the mask, a CT scan while inside the mask, and an MRI to help map the tumors. Before all…

Both my parallel streams to get my hot hands on lorlatinib seem to be paying off. In the US The Mayo oncologists filed a successful appeal with insurance and the…

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…

Previously on this blog: On 31 Jan the Mayo oncologists told me that the original 2 brain tumors on which I’d had the gamma knife surgery were completely gone but…