Zanidatamab Treatment #1 and #2 Update - 3/16/26

Thought I would share a quick update of how things have been going since starting the clinical trial. 

First off, I had an amazing trip to Costa Rica!  I went with another stage 4 breast cancer thriver, and we did so many adventures together.  We did ziplining, hanging bridges, sloth tour, river tubing, white water rafting, horseback riding, wildlife sanctuary tours and ATVing.  The weather was perfect and our resort was so beautiful.  We had about 22 natural hot spring pools at the resort that we enjoyed as well.  We had a bit of a hiccup halfway through the trip when we ended up getting a parking ticket in La Fortuna.  We couldn’t understand what the parking ticket said initially cause it was in Spanish, but we thought we’d just pay it when we return the rental car.  When we got back to the resort, I noticed that the license plates were missing off the rental car and thought someone stole them.  We ended up having the front desk of the resort read us what the ticket said and apparently the police take your license plates when you get a parking ticket.  We ended up contacting the rental car company and unfortunately we had to go back to the nearest office within 24 hours to pay the ticket, the license recovery fee and get a new rental car.  The closest office was 2.5 hours away!  So we had to move our ATV activity around and make the drive to pay about $500 altogether for everything.  It was unfortunate, but we made the best of it and saw it as another adventure.  We decided to book a river tubing activity in Liberia, the area of where we went with the rental car, which turned out to be so much fun.  That’s the thing, with cancer, you don’t sweat the small stuff.  There can be blessings found in the hard things, the challenges, the setbacks.  It doesn’t mean you don’t acknowledge the bad, but it just means there can be good along with the bad if you choose to see it that way.  Whatever happens, what is something good that can come from it, even if it’s hard to see sometimes. 

As far as my treatment goes, I was so thankful to start the trial for Zanidatamab a week before I left for vacation.  It was a long day as I arrived at 6:30am and left around 5:30pm.  Each time I go for my infusions I have to start out doing blood work, then meet with the nurse, oncologist and study coordinator to give me the go ahead to start treatment.  Then get my pre-meds, vitals and wait an hour for the drug to be released from the Pharmacy.  The infusion is about 90 minutes and then I have to wait an hour after infusion to make sure I don’t have a reaction.  The process on the clinical trial is pretty intense and strict, they must follow all these steps carefully.  Along with Zanidatamab, I have to take Xeloda chemo pills twice daily for two weeks on, one week off during each 3 week cycle.  I have to record the time I take Xeloda every morning and evening. 

As far as side effects, they haven’t been that bad.  I was nervous for having bad side effects on my trip, but the biggest one when I was there was diarrhea, which made it sometimes challenging when we were doing all the fun activities.  But other than that, I’ve been feeling pretty good.  I have fatigue and brain fog still, but nothing out of the norm from previous treatments.  Another side effect I am watching for is hand/foot syndrome which is from Xeloda.  Apparently this can start early in cycle 2, which I just started on the 13^th, but so far so good.  This can cause burning, pain, redness and dry skin on hands and feet that can make walking or using hands difficult.  I have some medication for this if it gets to that point but I am hoping not.  But all in all, I am feeling good on this treatment so far and that is a blessing!  On another positive note, my back pain went away.  Not sure what was causing it but I believe it had to be muscle related and just took some time to heal. 

In other news, my parents are coming into town this Wed the 18^th!  I am excited to see and spend time with them.  They will be here for my 36^th birthday on March 22^nd.  My dad will be here for week and my mom will be here until April 8^th.  My sister is then coming out on April 8^th as we are supposed to go to the Lady Gaga concert on April 10^th which I am pumped about.  It’ll be a nice month or so of family time!

I get my next scan on April 2^nd.  I am nervous for this scan as it will be showing whether or not this trial is working.  I am so hopeful though and I have a lot of confidence in this drug to work for me!  I’ll be sure to give an update after this scan.

Thank you for continuing to follow my journey.  It’s not easy, but I am hanging in there and trying to enjoy the little things, the big things and everything in between.  Being a full time cancer patient is exhausting, but it’s something I am always willing to do if it means I get to still be alive.  Yes it’s hard, and it’s beautiful.  Because I’ve learned a lot about myself, I’ve made new friends, I’ve had more time with family, and I’ve been given the gift of perspective.  Seeing the light amidst the darkness is such a beautiful gift. 

Love, Stacy