What's Going On?

A couple months ago, in May 2025, I had a PET scan that showed some disease progression.  My doctor suggested putting me on a protocol that was more targeted to my specific disease and genotype.  It's a combination of 2 chemotherapies, irinotecan and xeloda, and an immunotherapy, erbitux.  I was put on a 3-week cycle with the chemotherapies, and every 2 weeks with the immunotherapy.  The goal was to re-scan in August to determine the efficacy of this new protocol.

I started at the end of May, and knew from the beginning that this was going to be difficult.  The initial phone call with the pharmacist (she reviews the side effects and what can be done to address them) was daunting.  The nausea and fatigue hit me within the first cycle.  By the second 3-week cycle, the nausea was consistently accompanied by vomiting, and other unpleasant side effects were kicking in.  During the third cycle, diarrhea 3-4x/day was my new normal.  I had reached out for help with my doctor’s office, but emailing back and forth with the nursing pool was tiring and I didn’t have the energy to call in.  I tried to tough it out until my next appointment.

By that time (mid to late July), I had lost 10 lbs, was very dehydrated, and my electrolytes were imbalanced (specifically, K+ and Mg+, which could cause cardiac issues).  I was put on hydration and electrolyte replenishment for the next 3 weeks and made the decision to stop medication until my next scan.

The August scan shows both positive and negative results; it's a little difficult to interpret because by the time of the scan, I had been off medications for about a month.  So, I am going to continue on the same medication mixture, with a couple of changes:

(1)    Reducing the dosage of irinotecan to 80%.

(2)    Switching from xeloda to 5FU.  This is going from 2-weeks of daily chemo pills to a 46-hour pump.  I should be able to tolerate this better.

(3)    Increasing the # of check-ins I do with my doctor’s office.

In addition to this, I’m making some changes on my own:

(1)    I’m going to be proactive with the nausea.  I need to take the anti-nausea medication BEFORE the nausea hits! 

(2)    I’m going to be more proactive in reaching out to my friends and family for help.  Part of the challenge is knowing what to ask for, and I need to figure this out.

(3)    And, with the help of a friend, I’m relaunching my personal website (linerlee.com) so that:

a. I can blog again, and work on maintaining and building clarity of thought.

b.  And, share my calendar, so friends can find time to do something together!

At the end of the day, this “stage IV adenocarcinoma of the colon” is a managed disease.  I just need to find the right balance of managing the medication, side effects, my expectations, and life in general.