Update On Next Steps - 2/4/26

Thought I would share an update since it’s been a while.  I’ve been waiting for so many things, and finally have some answers as to my next steps.

I mentioned last time that I was going to head down to the Mayo clinic to see if there was a clinical trial available.  In that appointment, Dr. Goetz mentioned there was a trial testing the effectiveness of a drug called Zanidatamab compared to Trastuzumab for those who fail on Enhertu.  Dr. Goetz then left the room for a bit and came back and mentioned the trial was temporarily closed, which could be due to budget or other reasons.  I ended up looking up the trial on clinicaltrials.gov and found the same trial here in Coon Rapids, MN.  I mentioned this to my local oncologist, Dr. Lassi and she called to check in on it.  Apparently after checking however, the trial was closed.  I was devasted. 

I was then waiting to hear back from Mayo on when the trial was going to reopen since it was temporarily closed.  I wasn’t sure when they were going to get back to me, but thought I would continue to wait.  Dr. Lassi then pushed out my third treatment start date to Feb. 4^th as I continued to wait.  I also needed to wait for my biopsy results of the lymph node and the Guardant 360.  The waiting and agony over the unknown is the worst.  The longer I keep waiting, the more the tumors are growing.

But then on Monday Jan 26^th, I received word that the trial at Mayo was going to reopen that week! I was elated to hear the news and wanted to pursue this option.  I talked to the study coordinator and she mentioned she couldn’t get appointments going and scheduled until it officially reopened.  So I had to wait to receive the call that it reopened.  Friday came and I still not had heard about the trial reopening, so I called back on Monday Feb. 2^nd and finally the trial had reopened.  I also had received my biopsy results back which indicated my cancer is still HER2+ only.  Unfortunately though, the study coordinator indicated I would need to resend my biopsy sample to the lab again as part of the trial requirements, which could take about 7-10 business days.  They cannot get my treatment on the trial scheduled until that comes back and I need to go through rigorous testing and scans to get prescreened for the trial.  I will need to get an Echo, Brain MRI, CT Scans of my bones, chest, pelvis and abdomen, in addition to a blood draw and physical examination.  Those appointments are scheduled on Feb 5^th and 6^th of this week. 

I also learned this trial may not be guaranteed that I will receive the new drug Zanidatamab because they apparently randomize you into receiving Zanidatamab plus chemo pill OR Trastuzumab plus chemo pill.  Since I already have had Trastuzumab which is Herceptin, I really hope I don’t get randomized for this one.  I mentioned to the study coordinator that if I don’t get chosen for zanidatamab, then I likely won’t do the trial, since my third line of therarpy would be more effective with Trastuzumab, Xeloda and Tucatinib. 

I won’t know which arm I am chosen for until 3 days prior to my start date of the clinical trial, which likely won’t be until the week of the 16^th.  My Feb. 4^th infusion got cancelled as I was pursuing the trial and right now I have an infusion scheduled for Feb. 17^th with M. Health Fairview in case I fall back to my third line of treatment. 

I really want to do the trial and hope I get on Zanidatamab.  Dr. Goetz mentioned that now is the time to do a clinical trial because they usually don’t work best on later lines of therapy.  I don’t want to miss the chance to try out a new drug cause I could always fall back on my third line of therapy.  That and it’s not guaranteed that Zanidatamab will be available in the future if I need it.

Exhausted is an understatement.  I have been so overwhelmed and drained both mentally and physically.  Waiting for answers, waiting some more, and now pursuing an option that doesn’t even guarantee me to get on the drug I want to be on.

I am leaving it up to fate.  If I don’t get chosen for Zanidatamab, then maybe it just wasn’t meant to be and having faith in my next set of treatment I will fall back on. 

The hardest part of the waiting is knowing the cancer is growing and knowing I can’t do anything about it.  Lately my back has been in pain and nothing seems to be helping it.  I worry that this is caused by my tumors.  I worry that waiting is going to bring me even more pain as time goes on.  The week of the 16^th can’t come soon enough. 

I’ve been having a hard time mentally lately.  I am trying to remain positive, but this stuff just drains you.  So many appointments, being let down with the trials and waiting to find out your fate has taken a toll on me.  But I am hanging in there.  All I can do is move forward one step at a time and continue to remain hopeful. 

In other news, my mom was with me for the whole month of Jan, but headed back to NM on the 31^st.  It was so nice having her here!  Also, I was on the Pink Power Hour podcast episode that came out on Jan. 14^th.  You can listen anywhere you get your podcasts or Pinkpowerhour.org. 

I’ve also been trying to continue working out, although I haven’t ran in over a month.  My body is just too weak and exhausted.  Everyday I hope I get some strength back, but everyday that passes I feel weaker and weaker.  It’s a tough spot to be in. 

Thank you to everyone for all your love and support, it really means a lot.  I will give another update when I find out path forward after the randomization of which arm I am in.  I also should hopefully have the Guardant 360 results back then too as I am still waiting on those results. 

Love, Stacy