Make Good Choices

I woke up mad this morning but also grateful for Trodelevy the drug I’m currently on. I know you all think of me as “have a happy day” kinda person but I do get angry sometimes.

Last year I was on a clincal trial (phase one) drug which had terrible side effects. My neuropathy, after 8 mo.on the trial, got so bad I now can’t dress myself without help. My lungs filled up four times and had to be drained and maybe the pressure fractured 3-4 ribs. my lymphedema is now so bad I can’t wear my cute clothes bc arm too tight.

I started the trial in late April 2020 and heard of trodelvy by June. I called the trial center and asked to go off trial and try Trodelvy. The director got on phone and kinda scolded me for suggesting I stop trial. She said it prob wouldn’t be a good fit—it caused diarrhea and neutropenia which I was susceptible to from other combos. So I reluctantly stayed on trial as my neuropathy worsened and my lungs filled up.

I felt ignored except by the kind nurses. Then my cancer progressed to my liver in Jan. 2021 and I could no longer be on the trial. They tried to get me to enroll in another and I said “no way” and thought I’d take my chances with trodelvy. My brilliant onco got me on trodelvy within 1 week. I’ve been on it ever since.

My last scan looked good and my skin mets were gone in two weeks. I never developed neutropenia and I can handle the diarrhea. The side effects from the trial linger horribly. I’m grateful for this drug and to be alive but I want my body back. On Sunday I will have a brain mri bc I’m losing some sensation (light touch) in my torso—it’s probably nothing but better to be safe.

The moral: do your research and be proactive. This is not to disparage all clincal trials bc we need them (!) but if something isn’t working, don’t be afraid to make another choice. And I had other standard of care choices before I went on trial but my cancer is particularly aggressive and I had tried 3 lines of drugs before going on trial. Maybe exhaust your standard of care drugs before trying a phase one clincal trial. But who knows? cancer is wicked and sneaky, Listen to a trusted oncologist or two. (Two kind docs suggested Trodelvy before I called center to stop trial.)