Treatment Beyond the Standard of Care




When I was diagnosed with Stage III Triple Positive IDC in December 2013, I went through the standard treatments – neoadjuvant AC+TH with six rounds of Perjeta. I was told by my oncologist that a pathologic complete response carried the best prognosis but that I wasn’t likely to have one because I was highly hormone positive and started out with a large tumor burden. When I pushed him about doing more chemo after surgery if I had residual cancer, he told me that extra chemo was not standard for hormone positive, but I was welcome to join a clinical trial.

Wanting to be as aggressive as possible, I had already decided even before my post-surgery pathology came back that I would do a trial if I had residual disease. When I learned that I had a small tumor and two lymph nodes still positive, I immediately looked into trials I qualified for. I came up with two for patients with residual cancer after neoadjuvant chemo. One was a Halaven trial at my local cancer center, and one was a Kadcyla (T-DM1) trial at Moffitt, a three-hour drive away from me.

While the logistics of the Kadcyla trial (known as the KATHERINE trial) were more complicated than those of the Halaven trial, I didn’t care about that. I wanted the best treatment possible and a trial targeting HER2 seemed like the best bet. But the problem was that with the KATHERINE trial, I would have a 50% chance of being randomized to Herceptin only and with the Halaven trial, I was guaranteed to get the treatment drug. It was a very difficult decision, but in the end I decided to roll the dice on the KATHERINE trial. And for once things went my way. I was randomized to the Kadcyla arm.

Currently, I receive 14 cycles of Kadcyla every three weeks. I had my first treatment on September 22, 2014 and I [had] my last treatment June 24th. It is more tiring being part of a trial than it is getting standard treatment. Every treatment involves labwork, a doctor’s visit and observation periods. I also can only get certain testing, like my routine ECHO at the trial facility. So with frequent, long, exhausting visits to Tampa, I have found it hard to hold a job and get back to normal life.

But I am so glad that I decided to participate in a trial. For one, I hope getting treatment beyond the standard of care will improve my prognosis. But even if it doesn’t, I am happy that my contributions will help science and the many women who will come after me.

— Bad_At_Usernames, KATHERINE trial

The opinions expressed in this article are the author’s own and do not necessarily represent those of nor are they intended as a substitute for the medical advice of physicians.

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