Five weeks in and the side effects I’m experiencing from lorlatinib are so much better than those I experienced on crizotinib:
- Tiny negative impact to my memory and attention.
- Continued slight visual disturbance. I’ve had this since crizotinib and it could just be the scar tissue of my old retina tumor.
- Euphoria. This awesome symptom coincides more with my beginning regular MBSR meditation and getting deeper into fasting/ ketosis but lorlatinib does list as a potential side “mood effects (aggression, agitation, anxiety, depression, euphoria, irritability, mania, mood swings, personality changes, stress, suicidal ideation)” Honestly, I don’t care what’s causing it, I’ll enjoy it while I can.
- Liver function still not great.
- Cholesterol flying through the roof.
My old doctor’s immediate response to the high cholesterol was to put me on statins and my first instinct was to agree. Fortunately, Brad convinced me to give it a little more thought before I put any more chemicals into my body. I’m glad he did. Research revealed that not only do statins come with their own list of side effects but they might also raise my blood sugar. Since the foundation of my cancer-fighting strategy is a low blood glucose to ketone ratio that is a no go. My old oncologist was privately funded by me and had no issue with my declining the statins.
My new oncologist is funded by the taxpayers and beholden to a board so it took a little more convincing to get him to monitor rather than treat my cholesterol. Still, I’m the only person in Hong Kong taking the drug so there’s not exactly a defined standard of care for this situation, as he pointed out, and we have a little wiggle room.
I asked him to tell me the short term risks and he indicated that the risks were really all long term. I pointed out that the median survival rate for someone with my diagnosis given his hospital’s standard of care was 6-8 months and I was diagnosed 7 months ago. Dying of a heart attack at 50 is kind of a pipe dream for me. We had a little laugh and he agreed to monitor while the board would “run it through the risk tables.”
I’m pretty sure I’m going to win this one and like to think I’m helping set a standard for hypercholesterolemia secondary to lorlatinib in Hong Kong. What a legacy!
