Amy
See full story
Amy was breastfeeding her daughter when she discovered a lump in her breast. She was diagnosed with “de novo” metastatic breast cancer and learned it had spread to her liver, bones, and brain. Learn more about Amy’s experience with breast cancer here. Throughout her journey, Amy was “very upfront” that she was not only “interested in clinical trials” but wanted to be “considered a candidate…in as many as I can.” However, she realized the “more treatments you do or the more progressions that you have” means “you get kicked out of a lot of things.” Since Amy’s cancer spread to her brain, which is considered “a sanctuary site,” she disqualified for “a lot of trials automatically.” She found herself in a tricky position, where her caner had progressed, but she was “otherwise a pretty health individual” so was also often told “you’re not sick enough.” Amy understands the importance of balancing “how sick the tumors are going to make you versus how sick the treatment might make you” but being a metastatic patient doesn’t know if she has “years to wait” for a “new drug that’s still in trial.”
Amy was “super excited” when she eventually qualified for a glyburide trial related to her brain tumor. She didn’t feel like there was “real risk” in participating because Amy knew if it didn’t work, she would be put “back on the standard of care.” Amy was also motivated to participate because she knows they “need patients” in order “to have good clinical data” and would “hopefully help somebody” including herself. Amy is also “pretty resilient” and knew even if she was “knocked down a little bit by a harder treatment” that would still have “better opportunities for success” if she participated than if she didn’t.
Amy is excited to be in a trial that involved taking a diabetes medication for her cancer.
Amy is excited to be in a trial that involved taking a diabetes medication for her cancer.
I'm so excited that I'm participating in my first clinical trial, actually. And it is, it's, it’s related to this brain tumor. It is a glyburide trial, and it is to assess whether or not you can use glyburide in a non-diabetic patient and effectively control swelling in lieu of steroid use. So, I'll basically get to play the part of a diabetic patient doing the finger sticks and checking my sugar to make sure that I'm not dropping out while I'm using glyburide to prevent swelling secondary to that stereotactic radiation procedure.
Amy speaks about participating in trials to get medications approved faster.
Amy speaks about participating in trials to get medications approved faster.
As a patient, I want to, “Try me! Try me! Pick me!” Because if you get more people like me that can participate in a trial, then maybe you can get a new drug approved quicker or a new modality approved quicker. Because that's the biggest thing for us as patients is we see all these amazing trials and drugs in the pipeline, and they're years out before we can touch them. So, for a metastatic patient, I don't know if I have seven years to wait for the FDA to clear treatment on a new drug that's still in trial. I'm glad that there's a Right to Trial legislation in some states for you to be able to do so. And we, actually, do have that here. But I still don't even know, if I were in such a position, what it would take for me to get access to those meds or those treatments so.