xeloda (capcetibine) recap
I took chemo in the weirdest places over the last six months. On the beach in Charleston, Myrtle Beach, Maine, and Costa Rica. In bars. In the mountains of Amherst and Acadia National Park. At dinners. At client events and meetings. At a Chris Rock comedy show. I chased chemo with water, Gatorade, and my personal favorite - a mimosa or red wine (don’t worry, my doctor said a drink here or there is fine). I’d often wonder how many people in the bar or restaurant were also dealing with the crap of cancer. Or had cancer and didn’t know. But, it’s done! I’ve made it through!!
I have been taking Xeloda for 2 weeks on, 1 week off cycles, for 6 months. I started back in June, the day after my last radiation treatment. I think it’s helpful to recap my experience. Disclaimer, everyone’s body is different - this was just my experience!
My insurance required me to order from a specific pharmacy. This ended up being a bit of a pain of a process. I had to call every 3 weeks and request the shipment, talk with a pharmacist, and then be here to accept the shipment of meds. I did however have a $0 copay, because I’ve met my max out of pocket, which was nice.
I started at 3,000mg a day - which equaled 3 pills in the morning and 3 pills at night. However, I did a dose reduction around cycle 4 to 2,000mg a day = 2 pills in the morning and 2 pills at night. I took them 12 hours apart and 30 minutes after a meal. I am somewhat obsessive about ensuring I took these 30 minutes after a meal and not eating within 30 minutes of taking them and remembering every single dose. I got a Dosey Pill Clutch and their little bags REALLY helped ensure I always had my next dose with me because I would just pop it in my purse.
Like all chemo, the side effects were cumulative. Also, some would come and go and some only popped up once. In hearing other experiences, I think I got out overall fairly easily.
Side Effects:
stomach pain - this was HUGE during my 2-3 cycles and a big reason my doctor reduced the dosage
diarrhea - stuck around with pretty much every cycle but did get tolerable after the dose reduction
numb fingers - my fingertips went numb with each cycle and got better on the off weeks
feet peeling - skin peeled off my feet but wasn’t painful
hands peeling - skin also peeled off of my finger tips and sometimes caused pain
eye infection - I had a pretty nasty stye on my eyelid. unsure if this was Xeloda related but my doctors seem to think so.
hair growth - the hair on my legs and unmentionables was sparse. thankfully the hair on my head stayed strong but I’ll never know if it was delayed
mouth sore - I got a few mouth sores throughout treatment but it wasn’t too terrible
fatigue - definitely more tired throughout the day
hydration - the craving for water and hydration was real!
muscle and joint pain - cycle 7 brought some hip flexor pain and it got even worse for cycle 8, to the point where I could barely walk.
appetite - during the cycles my appetite was somewhat nonexistent but would return on the off weeks.
Overall, having the off week between cycles really helped clear things out and lessen the burden on my system. I was pretty devastated for the dose reduction but also know there was no way I could have sustained the stomach pain and side effects if I didn’t reduce the dose. I think I got through pretty easily until those last three rounds.
I always enter the new routine after a treatment with a bit of trepidation. I’m excited to be one step closer to getting my body back but a little worried about not having this safety net. Cheers to one more treatment down!
