Update on My Path Forward 2/19/26

I wanted to give an update of where things are at with me.  I mentioned last time that I was waiting to get into this clinical trial at the Mayo clinic which would randomize me into the Zanidatamab + Xeloda or Herceptin + Xeloda arm.  I wanted to share that I was chosen for the newer drug, Zanidatamab arm!! I am so happy I got chosen for the drug I wanted.  I start the clinical trial tomorrow on Friday, Feb. 20^th. 

It’s been a long waiting process including many appointments at the Mayo clinic to get into this trial.  I had to get blood work done, a Brain MRI, CT scans and meet with doctors to get on this trial.  Thankfully the CT scans I had a couple weeks ago didn’t show much progression, only slight progression in my lymph nodes and my bones seem to be stable vs. my PET scan back in early Jan.  My brain MRI also turned out to be normal, which is always a huge win.

One downside lately is I’ve had increasing back pain.  I mentioned last time that I was having back pain that didn’t seem to go away.  Over the last couple of weeks I have continued to have this back pain that seems to progressively get worse as each day goes on.  The other day I ended up talking with my doctor and got an appointment to get it checked out.  We did X-rays, an MRI, blood and urine test.  The scans didn’t show anything concerning, my blood work looked fine, but my urine test showed blood and white blood cells in my urine.  I ended up getting the culture back and it turns out I was also negative for any type of infection, which is actually good news, since I don’t think I can have an infection and start the clinical trial.  Unfortunately, my back pain was so bad the other day that I ended up in the ER.  They gave me pain meds that helped relieve back pain and did a CT scan to figure out what was going on.  The CT scan didn’t show anything except I have tumors in my lymph nodes in my abdomen that could be causing my pain if they are pressing on a nerve.  It’s frustrating not having any answers to what’s causing my back pain, but right now I am thinking it’s the tumors that are growing.  I’ve been taking Ibuprofen and Tylenol each day and it seems manageable right now, I just hope that someday it goes away, because I can’t be in chronic pain and live my life.  I also don’t want to be on pain meds every day, that is not good long term. 

But given all that, I am excited to finally start this trial tomorrow!  It has been a long wait, but worth the wait to get on the drug I wanted.  I have high hopes for Zanidatamab ongoing.  The plan is to get that through IV every three weeks, then I have to take a chemo pill called Xeloda daily.  I will get scans every six weeks.  I’ll have to drive the Mayo clinic for all my visits, but thankfully it’s only an hour and a half away.  I will be on the clinical trial until it stops working, which means until I have progression. 

It’s been a hard couple of months to start off the new year.  I’ve been exhausted both mentally and physically and the waiting period has been the hardest, especially not being on treatment and having these tumors keep growing.  I am happy though that I have a plan moving forward and I believe that God is putting me on this path for a reason. 

In other news, I will be going to Costa Rica March 2^nd to 8^th with another fellow Stage 4 Thriver!  We have plans to zipline, ride ATVs, go on sloth tours, go white water rafting, among so many other things.  So excited to get away and go on adventures!  Fingers crossed that I have minimal side effects from this new treatment so that I can enjoy my trip. 

Thank you all for the continued support, it truly means a lot.  All the prayers, kind words, messages, and thoughts, keep me going.  I will continue to update over time for how I am doing on this trial.  For now, I am ready to keep kicking cancer’s butt and keep living life to the fullest.

Love, Stacy