Making a decision in the absence of evidence
I had a check in with oncology yesterday, 2 weeks after starting the oral chemo drug (abemaciclib). Those 2 weeks sucked. My nickname for the drug is Abomination*.
My stomach was unsettled all the time, but no nausea. After 9 doses (morning of day 5), I had diarrhea twice in quick succession and stomach aches. Then diarrhea again every 4 days after that - and each time it was worse.
When I had my checkup with the oncology nurses, they said my symptoms were considered "mild" (my worst day would be classified as grade 2 diarrhea, 4-6 times a day that resolves in 24h). They asked the doctor for guidance though, because my white blood cell count was low and I had requested a dose reduction so that I wouldn't feel sick all the time.
The oncologist came by and provided the following info:
- From a medical standpoint, my symptoms are "mild" and if I stayed on the medication the standard medical guidance would be to just deal with the symptoms. But if the symptoms affect my quality of life, then that needs to be a part of the decision for what to do next.
- She could reduce the dose from 150mg 2x per day to 100mg 2x per day, but she couldn't make any promises about whether I'd feel better on a lower dose.
- She checked for any updates to current research on whether the drug improves survivability in my situation - and there's still no evidence from the current trials. Given the lack of evidence, I could choose to prioritize quality of life and stop the drug entirely (but continue with the estrogen blocker which has been fine so far).
- She said that a year ago, doctors wouldn't even have suggested the drug for my situation. She emphasized that there is no "right answer", so I shouldn't feel like stopping the drug is the wrong decision given that there's no data that it helps. She'd go with whatever I decided I wanted to do.
I'm still waiting to hear from the insurance company. If I don't hear from them this week, I'll email my contact to see where things are.
I'll have another check in with the oncology nurses on Oct 1 and then see the oncologist again on Dec 3. I also have a followup with the radiation oncologist later this month.
In other news, I have learned that it's easy for me to not notice a splinter in my toe for well over a week - likely thanks to ongoing neuropathy in my toes. After showing it to my partner, she encouraged me to get it looked at - a doctor probably spent at least 20 minutes gradually shaving down a large callus on my toe and removing pieces of the splinter. My partner removed the last tiny speck that was left.
After that experience, I'm going to keep my feet covered in the backyard and in dance class until (hopefully) the neuropathy is gone from my toes. I've been skipping dance classes for a few weeks now given both the splinter and the side effects from Abomination. I'm planning to resume dance in a few days.
Hopefully from here I'll largely be in maintenance mode. I took the remaining Abomination and other unused meds to the pharmacy for safe disposal, and we ordered food delivery for dinner to mark the removal of Abomination from my life.
* My kid has a prescription eye ointment that he needs to use each night. It blurs your vision, so understandably he despised it when he was little and gave it the nickname Boo. That was the inspiration for the Abomination nickname.