Valerie Frank and Sara M. Tolaney, MD, MPH, share advice for patients on managing treatment with antibody-drug conjugates and the importance of participating in clinical trials for HR+/HER2- metastatic breast cancer.
I had chemo I had a lumpectomy followed by another surgery because I had bad margins. And then two more surgeries, one of which was because I had a hole that appeared in my breast. And then another one, then the hole reappeared and a wound care surgeon at the Brigham (and Women’s Hospital) did another surgery to close that wound. So I ended up having like the most surgeries, anyone could have for mastectomy.
And I had radiation and then I thought, OK, I knew that I was high risk for to recur. I think I always thought the odds were about 40% based on what I had written a read. And so that all happened like in 2018-2019. And then, in January, New Year's Eve … that New Year's Eve, I was in a lot of back pain, and it just kind of came out of nowhere I like I called my oncologist, we had scans. And I had metastases to the liver — pretty severe metastases to the liver. Lung bones someplace else. … Lots of cancer everywhere. Super bad stage 4.
I can't even describe how horrible that was. I was in treatment for just what felt like a lot longer than most people because I had such a disastrous experience with surgeries. My surgeon is amazing. And I adore her. And it just I just kept having the worst luck. And it was just a, I think I was in treatment for like, a year. It was just, it was just a really long time. It was a lot of chemo. The chemo was brutal. surgeries, radiation …
At some point, my oncologist at the time, a different oncologist than Dr. Tolaney said, “OK, well, you know, we've done everything for you that we can do. And now you're just going to check in every six months, or every year. and I was like, shocked. And I was only in that state for, I don't know, to one to two years, I would not a long time. And the entire time, I was terrified that it would come back, and it did. I was very sick. When the cancer came back. My liver was in terrible shape. And Dr. Tolaney and Jason will have to my husband will have to remind me of what we did first what treatment we did first. It was, I believe it was I don't remember the name of it. But it did not work. It did not work. It was pills. It didn't work. hormonal therapy, which didn't work. Yeah, it didn't work. So then. And I was very kind of emotionally beaten down, partly because I was in a lot of pain. I was in a lot, a lot, a lot of pain.
The palliative care team at Dana-Farber with Dr. Randolph was pretty amazing and trying to take care of me. But I was in a lot of pain all the time. And, and then we tried something else that worked. Xeloda. So it was really wonderful and I and it allowed me to live kind of a normal-ish life. It started to work. And it worked for some number of months, until it did not. And then it was time to make a change to another treatment.
I tend to feel incredibly defeated when a treatment stops working. And it's a real testament to how wonderful my team is that they've been able to like talk me down off of a ledge every time a treatment stops working and try to tell me like this is what happens and treatments work and then they don't and then we make a change and we're going to get you back and you know what, what usually precedes the change though is kind of falling apart. physically for a little bit.