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 medicine and scans, excellent care, and contributing to the advancement of these miracle drugs. The disadvantage is the cost of travel.
I had a call with the doctor in charge of the trial this morning. In addition to needing progression of brain tumors and a brain tumor over 5mm (which I have), I also need to prove no progression of my body tumors in order to qualify for the trial. My Jan 30 scan from the Mayo shows no progression – remission, in fact – but is already too old. I’m working to schedule another scan here in HK next week. Unfortunately, based on the blood tumor markers and, well, the visual evidence of my neck tumors, I’m pretty sure it will show progression. This will also disqualify me for my second choice trial (entrectinib).
Plan B: Buy Lorlatinib in the US with Insurance Assistance
The backup plan is to try to see if insurance can help cover the purchase of lorlatinib in the states. I’ve been working with them on pre-approval this week and am now just waiting for the Mayo Clinic to call them. If it works out then, between insurance and Pfizer co-pay assistance, I can get the price down from $15,000 US per month to something reasonable. We’ll still need to travel to the US to pick it up but travel costs should be less than those for the trial. Also, it is expected to become available in Hong Kong later this year.
Update: In 2016 a woman who developed lorlatinib resistance was resensitized to crizotinib (Xalkori). Cool, eh?
Plan C: Ceritinib + Radiosurgery, if needed
Going back through the paperwork from my original biopsy, it looks like ceritinib is covered here in Hong Kong. I need to read much much more on this TKI but it looks like it may have had success treating brain mets. The side effects are supposedly worse. If it doesn’t help the brain mets, there’s still time for more radiation. I need to run it by my concologist.
- Gefitinib is another medication approved in Hong Kong that will target my EGFR mutation rather than the ROS1+ mutation targeted by the ones above. I haven’t done any research on it yet.
- Other TKIs approved in the states that I haven’t come across yet. Research pending. Check out all these TKIs!!
- There are two Phase I trials for which I think I’d be eligible (Ceritinib + Trametinib and TPX-0005) not to mention countless I probably haven’t found yet and and more coming soon.
- Traditional chemo.
There are still lots of options. I’m working now to inspire a sense of urgency in the oncologists I’m dependent on (here in Hong Kong and the Mayo) and keep them focused on the most important tasks. I have lots of other questions for after I have a path to the next treatment.