This week I’ve had a phone call every day from a patient I’ll call Fred. On some days he’s called me twice. Fred is in his late fifties and was diagnosed with stage IV lung cancer a few months ago. He lives at home with his mother who is 80. His passion is jazz music. They have an old ginger cat who he assures me loves jazz music, too. The three of them sit out on their balcony together in the evenings and watch the city lights while Louis Armstrong sings to them.
Fred calls me every day because he is anxious about the treatment his oncologist has started him on. With advanced stage lung cancer, Fred had molecular testing done on his tumor, which showed he was a candidate for immunotherapy. Fred calls his immunotherapy “space-age medicine” and he and I have talked a lot about what immunotherapy is and how it works. Fred understands immunotherapy is not treating the cancer; rather, it is revving up his immune system to do the work for him.
With the exciting advent of immunotherapy, oncology nurse navigators get to play an important role in educating patients about immunotherapy. In a column published in June, Chris Pirschel, Oncology Nursing Society staff writer, emphasizes the importance of educating patients to dispel myths they may have about immunotherapy. Extensive advertising of immunotherapy has led to many more conversations with my patients and caregivers about what immunotherapy really is and who could possibly benefit from it.
Fred never finished high school, and too much detail makes him anxious, so when I educated Fred about immunotherapy, he asked me to keep it simple. Here’s what I said:
- I told Fred there are possible side effects with immunotherapy (immune-related adverse events) which may occur shortly after the start of the medication all the way to some months later.
- I explained that because his immune system is being revved up, he could experience flu-like symptoms like fatigue, nausea, and body aches, just like he has when he is fighting the flu.
- I told Fred he may have some inflammation in his lungs, and that if he has this side effect or any others, he needs to tell his oncologist immediately, as there are ways to treat side effects and they need to be reported as soon as they appear.
- I warned Fred sometimes there can be a reaction to immunotherapy called a “flare reaction,” which shows up in scans as progression of disease but doesn’t necessarily mean the disease is getting worse.
Fred understands he is on a new and exciting medication that may have side effects. He understands he needs to be monitoring his health closely and keeping the doors of communication wide open with his oncologist.
Fred has taken me up on my advice and calls me daily to check in. I’m happy to report he’s doing well and has only experienced slight body aches and fatigue. We are waiting for his first scan to see how well the immunotherapy is working.
During our conversations these last few weeks, I’ve had the pleasure of getting to know Fred better. He’s taught me a lot, especially the importance of educating patients at the level they understand. I’m lucky Fred was upfront with me by making sure I knew what type of patient education he needed.
Now that I know more about Louis Armstrong, I go home some evenings and listen to him. Then I think of the three of them — Fred, his elderly mother and their ginger cat — sitting out on their balcony enjoying Louis as they watch the city lights.