Living Well with Triple-Negative Breast Cancer, Thanks to Immunotherapy
It’s like the best gift I ever had.
When Brenda Berchtold, 51, was first diagnosed with triple-negative breast cancer in 1986, her treatment options were limited: surgery, radiation, and chemotherapy were the gold standard. Things have changed quite a bit since then, and Brenda is now receiving one of the newest available drugs for someone with her condition.
It’s called atezolizumab (also known as MPDL3280A, made by Roche/Genentech) and belongs to a class of immunotherapies called checkpoint inhibitors. These are drugs that “take the brake off” the immune system, allowing a stronger attack against cancer. The target of “atezo” is a molecule called PD-L1, which some cancer cells make to try to avoid being killed by the immune system.
Brenda gained access to the drug by enrolling in a clinical trial in 2013 at the recommendation of her doctor, Leisha A. Emens, M.D., Ph.D., at Johns Hopkins University School of Medicine, who also happens to be the principal investigator of the study. Since enrolling, Brenda has seen her tumors shrink significantly.
We spoke with Brenda about her long battle with cancer, her extensive support system, and how treatment with immunotherapy is giving her renewed hope for the future.
CRI: Take us back to when you were first diagnosed.
Brenda: I lived in Virginia Beach at the time with my husband. We got married in 1983. Then in 1986, I noticed a small lump just on my right side, and went in to have it biopsied. I found out it was triple-negative breast cancer. I was 22.
CRI: What did your doctors tell you about that diagnosis back then? What did it mean for your treatment?
Brenda: Well, it was a very different time. The doctor told my husband—not me—that it was a very aggressive cancer, and to seek treatment. So we moved back to Erie, PA, to be with the family. I had a radical lumpectomy and radiation. I was cancer-free for almost seven years. Then we learned it came back again in the same area. After that, I had chemotherapy.
CRI: What was the chemotherapy like?
Brenda: You lose your hair, of course. I didn’t feel that great. I had multiple chemotherapy treatments, because it just kept coming back. No one really ever told us how aggressive triple-negative breast cancer is—that chemotherapy really does not keep it at bay for long and it’s likely to pop up again.
CRI: Obviously it’s quite a few years now since you were first diagnosed. How did you get involved with the immunotherapy trial?
Brenda: For about five years, from 2007-2012, I was doing chemotherapy treatments and clinical trials at West Penn Hospital in Pittsburgh, PA, and it just wasn’t curing it. So my oncologist, Dr. Antonios Christou, recommended that I go to a bigger facility. That’s what brought me to Johns Hopkins Hospital, and to Dr. Leisha Emens.
CRI: When did you start taking the anti-PD-L1 drug, and what did your doctor tell you about it?
Brenda: I started in 2013. Dr. Emens explained that it helps your T cells to fight off cancer. I really had no other choices available, so I told her that I would try it. They didn’t know what the side effects would be, so I had to sign consent forms—which was pretty scary—to explain any of the side effects that could happen. But after I received two doses, there was a 70 percent decrease in tumors shown on my first scan.
CRI: That’s great. What did you think when you heard that news?
Brenda: I said, “Oh my gosh. Can you repeat that to me? I just won the lottery [laughs].” It’s like the best gift I ever had. Then they kept me on that for 16 cycles and everything was stable.
CRI: Are you off the drug now?
Brenda: I was off it for almost a year. And then the cancer came back. There was another lymph node on the left side that showed cancer. So I was able to get back on the trial, and I started back on the drug in February of 2015.
CRI: They allowed you to go back on the trial even though the cancer had progressed?
Brenda: Yes, they did. There was a certain time period in between that qualified me to get back on the trial. And so I started back up again.
CRI: What’s the response been since you started back up?
Brenda: Awesome again. It’s almost 63 percent shrinkage in lymph nodes and tumors. It shows that the immunotherapy works.
CRI: Overall, how would you say the immunotherapy compared to the chemo, in terms of side effects?
Brenda: Oh, like 90 percent better than chemotherapy. You don’t lose your hair. I felt like I have more energy when I’m on it. And there really isn’t much nausea at all. Slight fatigue, but not too much. The only side effect I did have from the trial was a thyroid issue. And they took care of that with Synthroid, which I’m on now. I literally go in and have a thirty-minute treatment when I go to Johns Hopkins and them I’m done.
CRI: What is it like working with Dr. Emens?
Brenda: She tries to be business like, but I make her laugh once in a while [laughs]. She’s been an amazing doctor. If not for her, I wouldn’t be around. And God, of course.
CRI: Who’s on your support team?
Brenda: My husband, my father and mother, and all my family members and my friends. I can’t say enough about my husband. We got married when we were so young, and he’s still by my side after all this time. He’s been 100 percent supportive to me.
CRI: How does it feel to know that you’ve been a part of science in this way?
Brenda: Oh, it’s awesome. To realize that maybe in the future, this is what they’ll do to cure cancer, without having all the side effects of chemotherapy, and I’ve been a part of that…it’s just amazing.
CRI: What would you tell other patients who might be in the position of possibly going on a clinical trial?
Brenda: I would absolutely say, if that’s the only chance that you have for survival, do it. I mean, look what happened to me. I have people call me and want to talk to me, who have triple-negative breast cancer. And I tell them, if you can, get into a trial with this immunotherapy drug, because I’ve had such good results with it.
And also to not give up. I have a big plaque that I got in Baltimore. It’s stained glass and has the word “hope” spelled out, where the “e” is a pink ribbon. I just thought it was so fitting when I saw it in the gallery. Because I’ve always said that it’s so important to have hope.
CRI: You’ve been dealing with this for so long now. Do you go for periods of time where you don’t think about it? Or is it always on your mind?
Brenda: It’s always in the back of my mind. But I just love life so much that I just keep plugging away. My family is what gets me through it, because I have goals that I set. When my kids were younger, it was: okay, I need to see them go to kindergarten. Then I need to see them go into the higher schools, and to see them graduate. And that’s what keeps me motivated.
CRI: What do your children think about your experience on this trial?
Brenda: They’re totally thrilled and elated, because I’m still going to be around. All their life, they had to deal with me having cancer, and the scare of what might happen. But they understand that I’m a fighter and won’t give up.
CRI: And your immune system is now fighting, too.
Brenda: Yes it is.