Update - Cycle #1 and #2 of Evorpacept, Herceptin and Eribulin - 10/25/26
It’s been a month so wanted to post another update of what’s been going on with me. It’s been quite a rollercoaster lately with some struggles that I am trying to manage.
I started the new treatment of Evorpacept, Herceptin and Eribulin on Oct. 2nd. Oct 3rd I traveled back home to New Mexico. My trip back home with family was really nice. I got to eat lots of NM food, hang out with my parents, sister, and met up with some friends. My sister and I rode in a hot air balloon during the International Balloon Fiesta, that was so amazing and magical. A little scary of course, cause I am scared of heights, but it was so peaceful up there, I would do it again.
While I was in NM, my resting heart rate was slowly climbing each day and I felt pretty weak and fatigued when I would go to the gym. I started to become short of breath after just lifting some light weight. I ended up coming home on the 8th and then on the 9th I headed back to Mayo for another dose of Eribulin, since I am getting that day 1 and day 8 of every 3 week cycle.
That weekend after Eribulin I felt awful. I was so sleeping a lot, so fatigued, weak, and had shortness of breath from little exertion. That and my resting heart rate was in the 90s to low 100s so I thought something was wrong. I ended up messaging Mayo to see if I needed to go to the ER, mostly because of my heart rate, and they called me first thing on Monday and said it might be a good idea I be seen. So I went to M Health Fairview in Edina emergency department so I could see what was going on. They ran an EKG which turned out to be normal but indicated I had fast heart rate. Then I ended up waiting there for 7 hours as I was pulled in for a CT scan to check for blood clots and they did some blood work. My white blood cells had dropped super low to where I was neutropenic, and the CT scan showed a large plueral effusion in my lungs. That just means the cancer in the lining of lung caused a bunch of fluid to build up, which ended up collapsing my right lung significantly. This would explain all my shortness of breath, but I didn’t end up getting answers as to my fast resting heart rate. They took my vitals and apparently I had a fever which I didn’t know. Because of this and my low WBCs, they told me I had to stay the night in the hospital and start IV antibiotics in case of infection, and then in the morning have my lungs drained.
I ended up being in the hospital for a total of 5 days. I did have my lungs drained of the fluid which they took almost about a pint out, a total of 3 pounds of fluid which is just insane. I felt a little bit better after that, but I consistently had a fever which they were worried about. My neutrophils and WBCs dropped to the lowest they had ever been, meaning I had no immune system and was severely neutropenic. They actually put me in the severe neutropenic area of the oncology floor, behind double doors and in the corner, where there is best air flow to help prevent infections. At this point it was scary cause we were sure if I actually had an infection or if it was just treatment related. I continued to get IV antibiotics daily and they gave me a shot to help increase my WBCs. I spoke to the doctor and oncologist each day and tests were coming back negative for infection, so I likely felt the way I did because of the treatment itself. It had to the Eribulin chemo which is just so harsh on the body.
Being the hospital for 5 days was tough, I ended up crying to my nurse at one point saying I missed my dog and asking if I was going to be ok. She reassured me and made me feel at ease, all the nurses and doctors took really good care of me. I was also so grateful for all my friends who showed up for me. My friend Steve for watching Obie and taking him to the vet one day when Obie kept throwing up. Apparently, Obie just had anxiety and I think he was just worried about me. The good news is though the nurses said I could bring Obie to come visit me in the hospital, which was amazing! What hospital allows that?! So, I got to see Obie for a couple nights which just made me so happy.
I also had so many of my stage 4 thriver friends show up for me in the best way. I only ate hospital food twice in my whole stay, otherwise they would bring me breakfast, lunch, dinner, snacks and company. I received so many lovely gifts from each one, it touched my heart so much. I seriously have the best of friends, and they all get it and said they got me and would be there for me in a heartbeat if I needed anything. Truly felt loved and grateful, seeing all of them made everything much better. It also goes to show you who shows up when you’re in a bad position, who will stick around, who will stand by your side when you’re down. I know I have friends like this and for that, I am so grateful.
After I got out of the hospital, it took me a few days to get settled back home. At this point I still feel like I am recovering from being in the hospital. We really got no answers, other than it was the treatment that likely caused everything and not an infection. My resting heart rate to this day is still pretty high, which has me worried about what that could mean over time. I also am feeling pretty fatigued and low energy each day. I am sleeping a lot which I need but find myself wanting to go back to bed after I wake up. Because of the way I was feeling, I was unable to go to my friend’s parents’ cabin which was such a bummer, but I know I had to put my health first.
On Friday the 23rd, I went back to Mayo for my second cycle of Evorpacept, Herceptin and Eribulin. I talked with the oncologist, and they decided to lower the dose of Eribulin to see if that would make me feel better and prevent me from going back to the hospital. They also said I may need to get my lungs drained over time, although if the treatment is working, it should reduce the amount of fluid in my lungs. But also, the inflammation from treatment could be causing fluid buildup as well, we just don’t know if the fluid buildup is from cancer not being controlled or inflammation. I have an appointment scheduled for Nov. 17th locally in case I need it drained again, or if I really experience shortness of breath, I would go back to the ER. I also have a brain MRI scheduled on Nov. 16th locally because I am not getting my brain checked on this trial and that has me worried since with HER2+ it’s a 50/50 chance it could spread to the brain. I wanted reassurance and to advocate for myself to just get that done and make sure nothing is occurring there.
Another bummer recently has also been my hair. I had to get my extensions out because they were falling out. I am losing my hair on this treatment and it just makes me so sad, I don’t want to look like a cancer patient again. The oncologist said I probably will just get thinning of hair and may not lose it all, so I hope that’s the case. I had a really hard time getting my extensions out, I loved them and made me feel normal and back to me again. Now I am trying to accept this new me, this new journey of hair loss.
My next scan and first scan to determine if this new treatment is working is scheduled for Nov. 12th. I am really nervous for this scan, but I am trying to remain hopeful that it’s working and killing the cancer cells.
With all that’s been going on with me, life has just been feeling heavy and hard. I didn’t choose this life, it’s not fair. I would give anything to give up this life with cancer. I would take other hardships, I would take other challenges, because I feel like the challenges I am facing are the worst that someone can go through. I know things could be worse, but I am scared for my life, I want to live a long life and my faith in that is just dwindling the worse that I feel. It hurts that my quality of life has been suffering, and I am trying to survive each day, just hoping for another year, just hoping for another day. This is life with MBC and it’s brutal.
I am feeling all my feels, dealing with my grief, but also trying not to let cancer win. It can’t win. I am just taking it one day at a time, trying to find little moments of joy and keep living as much as I can. I am doing my best.
Thank you for all the love and support from so many. I truly appreciate every word, every comment, every prayer to help lift me up. Thank you from the bottom of my heart.
Love, Stacy
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