Cindy Capps explains how she advocated for her husband, who has RRMM, when otherwise effective treatments had untenable side effects
Transcript
The doctors are going to know the research and science inside and out. I trust our doctors; they’re very well regarded in the field and are specialists. I do think it’s important to find a myeloma specialist rather than a general cancer doctor, because myeloma is such a complicated disease.
But doctors may not know the side effects as well, or exactly how treatment is affecting my husband. Sometimes I—or he—have to speak up and say, “Hey, I’m not sleeping. I’m not sleeping for twenty-four hours because of this steroid. Can we look at reducing it?” Those hours of sleep may be more important than the slight advantage of a higher steroid dose.
That’s when you really have to advocate for yourself. If you don’t tell the doctors, they won’t know how miserable it is. If you simply agree with what they suggest and they don’t know your husband hasn’t slept for two days—and neither have you—they’re not going to change anything. But you can push back and say, “Hey, this is really, really bad for me. Can we try something else?”
Often, there are other options. Doctors may start with the standard of care and what the research recommends at the time, but there may be something they can adjust to ease the side effect or give you a better quality of life.
