Also known as a mind fuck.
The first time I had chemo was a little over fifteen years ago. Cisplatin and taxoetere. Four rounds, each more brutal than the the previous one. After number four, I was coughing up blood that looked like coffee grounds.
However, knowing that there were four and only four infusions provided me with a goal. Yeah, it sucked but I could reference an endpoint.
Later, I would go on a maintenance dose of pemetrexed and carboplatin and at the end of last year, I revisited that doublet with lorlatinib added into the mix.
On February 11 of 2020 I had my first dose of DS-1062a–a trophoblast cell-surface antigen 2 (TROP2)-targeting antibody drug conjugate. Quite the mouthful, but essentially, another version of chemo. And it’s been kicking my ass ever since.
More sublimely nasty than cisplatin and taxotere, but for my money, more difficult to tolerate than pemetrexed and carboplatin. At least with that combo I would feel pretty damn good again by week three.
This drug has been hard. Fatigue, mucositis, and eyes that always water. The hair on my head is scant and I’ve got no eyelashes whatsoever and only the faintest semblance of eyebrows. Last week I went to the dentist for the first time since the pandemic started and learned that I have a cavity under my crown and three more teeth that they are watching–I can add dental caries to my side effect list.
I feel suboptimal and, to my ongoing displeasure, look sick as well. As open as I am about my cancer I have very much enjoyed passing for healthy. And, for the moment, those days are gone.
Yesterday I had a scan, an echo this morning, and infusion on Thursday. Along with scan review I want to have discussion per risk benefit analysis with my oncologist(s) per ongoing infusions. Of course, if I have any significant progression, my hand may be forced. But if not, a decision must be made.
Do I continue a difficult treatment that has afforded a modicum of benefit? In my world should I even pose that question?
Well, yes. I am not obligated to undergo treatment. Which is not the same as saying I am giving up. Rather that the idea of a break sounds mighty appealing right now. After all, I have spent most of the past fifteen and one half years in treatment. And although I am mighty grateful that I have had continuing options, it is a lifestyle that does not always feel sustainable.
I’ll get back to you after my consult on Thursday.
You know endless support, etc👈🏼 Is always here Linnea ❤️
This is my first time visiting your blog. I’m stage 4 NSCLC since 2018. Wishing you all the best as you make the next treatment decision.
Crossing my fingers for you, LInnea. I just started carbo/pemetrexed myself. Round 2 on election day. Hoping for some good news that night to cheer me up. You have been through so much it is hard to imagine. May your scans be positive!!!!!
Good luck with your results. I am having my 2nd FEC chemo tomorrow and it totally kicks my ass too. Take care xxx