Breast cancer treatment

Chelsey: I heard the term red devil before and when I heard that, that was when I was like, “Oh, this is really real. This is not just a joke or a simple little thing that might go away quickly.”

I did Adriamycin-Cytoxan and I made a lot of lifestyle changes. Being a hairdresser and standing behind the chair, I had to adjust my work schedule. Touching my legs after a day of work felt like I would shudder at just the tiniest touch, fall to the ground, and be ready for bed.

Janice: I had chemotherapy both times because, at the time, there weren’t any targeted therapies for triple-negative.

Chelsey: The Adriamycin-Cytoxan was nasty. It was just not nice at all.

One side effect [was] peeing red. I’m like, “Okay, this is going through me really quickly.” And you just think, “What else is it hitting that fast?”

I didn’t have so much diarrhea. I had constipation from the steroids and from all the medication and that was the number one thing for me.

After you’re constipated for seven [or] 10 days, you get angry. You just really want it out of you so that was a really big struggle for me.

I didn’t want to leave the house because I didn’t know what to expect. Sometimes those bouts of diarrhea would come on suddenly and you certainly didn’t want to be caught out somewhere, you know? I didn’t feel like going out anyway.

My nose [and] my eyes ran constantly. I was miserable.

Finding out about dose reductions

Janice: I didn’t know about dose reductions. When I went to my oncologist for the third round, I think it was, he saw how sick I was and how awful my mouth and everything else was. I was just in terrible shape. He said, “We’re going to reduce your dose.”

It helped a little bit. But by the time I reached my fourth round, which was three weeks later, I still wasn’t well enough for him to feel comfortable giving me even that dose. So he reduced it [further].

I had foundation medicine done and it opened me up. I have a somatic BRCA mutation so that opened me up to be on a trial for olaparib.

Initially, the side effects were extremely low. I had a couple [of] bouts of diarrhea, but I really tried to control a lot of that stuff with my diet. I basically had been on it for about two and a half years until infections. [In] 2021, I had shingles, impetigo, COVID three times, [and] E. coli twice. The actual personal side effects seemed low, but the infections and the susceptibility that I had to everything [was] just over the moon.

[After being on the olaparib for 1.5 years, she was seeing results]. Once I hit that mark, I said, “Why wouldn’t we titrate or pull things back? Because I’m well and I’m on a trial so it’s very regimented, it’s scheduled.” My doctors were like, “Oh,” at first.

Each appointment I kept going back, “Okay, I’m ready. Are we going to do this?” Finally, I think it had been a year, they went to the trial and requested a dose reduction.

Quality of life and longevity [are] the most important things I’m looking at. Being 38, I want to live as long as possible. I’m not really interested in having leukemia and all of these other comorbidities that develop from medication. So that’s the driving force for me asking for a dose reduction because I was in a place of success, I should say. Why would I continue to keep poisoning myself while it’s done its job at this point?

The first is just to encourage patients to advocate for themselves. If they are having side effects that are really destroying their quality of life, they need to have that conversation. 

Many patients that I’ve talked to [are] afraid to report side effects from their treatment because they’re afraid that their oncologist is going to pull them off treatment that’s working. They don’t want to complain. They don’t want to be seen as a whiner. But these are things that your doctor needs to know.

Clinical trials are quite different than when you’re just getting standard of care from your oncologist because those conversations occur between you and your oncology team whereas, in a clinical trial, you have a few more people that are involved.

At the end of the day, what we’re looking at is personalized medicine: getting the right dose, the right drug, for the right patient. We don’t experience the same side effects from a drug.

Unfortunately, the new targeted therapies and endocrine therapies come in one dose. What we really need to start looking at is: Are they effective? Are they as effective at lower doses? Does that mean that patients could have a better quality of life and still have [the] quantity of life?

The toxicities would be less because we’re on this for life so you want to preserve as much of your organ function and your general health as you can. When you’re suffering from extreme toxicities and side effects from drugs, sometimes those either cause patients to discontinue treatment or the toxicities become so severe that their organ function is impaired. And that alone will lead to also a lesser length of life as well.

We’ve looked at this whole paradigm of maximum tolerated dose. Decades later, why are we still doing that? Why are we still pushing for the highest dose possible when we could possibly look at the optimal dose?

What is the optimal dose? If that means it’s lower, it’s still effective, and we’re creating fewer toxicities and patients can stay on the drug longer, patients will take the drugs because they’re not dealing with severe side effects, then it’s a win-win. At the end of the day, it’s a win-win for oncologists and for patients.