Lorlatinib has brand name Lorbrena in the US and Lorbinqua in Europe

Lorlatinib Week 1

by Maggie Jones

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 in Hong Kong.

According to my personal bellwether, the tumors behind my clavicles, I’m responding. The tumor on the right has almost completely retreated. Leftie feels about the same size but is inflamed and tender. It feels softer, somehow, so maybe the tumor is smaller and there’s just swelling.

Overall status report: Very good

The only symptoms I’m feeling right now are the usual fatigue, faint headache, and this new, increasing general achiness/ body discomfort – my left shoulder constantly clicks/ pops around whenever I move it and the muscles around my neck and shoulders are always sore. I guess it makes sense when I realize my muscles have been wrapped around a bunch of lumps and bump that sprung out of nowhere and are pulling them in new and exciting directions. Muscle pain is also a possible side effect of lorlatinib so that could be contributing. Regular massages haven’t been doing it so I broke down and saw a chiropractor a couple weeks ago. That offered a ton of relief so I’m going back Saturday.

Still, I’m feeling so good in general that I forgot to mention any symptoms at all when I met with a new oncologist yesterday. Brad, who endures all my bitching and moaning, had to bring it up. I’ll do a full update on the background behind that new oncologist meeting soon.

In the meantime, I should have some medical indication of whether I’m responding in mid-May. I had a blood test for tumor markers Wednesday (but don’t have results yet) and will schedule my next one to coincide with pickup of my compassionate use lorlatinib so I can combine appointments.

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