For Bob Carlson, 71, the standard treatment for his stage 4 lung cancer was almost worse than the disease itself. The 16 months of chemotherapy made him so sick he almost didn’t want to live. A search for better options eventually led him to Dr. Roy Herbst at Yale Cancer Center, who was conducting a clinical trial of a new immunotherapy drug called MPDL3280A. This drug, made by the biotech company Genentech, belongs to a class of immunotherapy drugs called checkpoint inhibitors; by “taking the brakes off” the immune system, the drug enables a more powerful attack against cancer.
Bob started the immunotherapy trial in August 2013, and continues today to do well. The FDA has now approved the drug that was part of Bob’s trial. Bob and his wife Julia hope that the funding for research continues and that the efforts to share important research advances accelerate so that new treatments are available to more patients sooner.
I had neck pain. This wasn’t uncommon for me, but it was particularly bad that day. So I went to the emergency room. They gave me a CT scan and they discovered a mass. I then went to a thoracic surgeon. He sent me for a biopsy and they determined it was lung cancer that had metastasized to my adrenal gland.
After my local oncologist told me about my treatment options, I didn’t want surgery or radiation, so that left chemotherapy. After 16 months of chemotherapy, I was so sick I wasn’t sure I wanted to live any more. Although the treatment they were giving me at the time was working, I was so messed up, I couldn’t even function. So my doctor took me off of it and said there was nothing left that he could do. He sent me to Yale and Dr. Herbst told me about immunotherapy and how it would retrain my T cells. I wasn’t ready to die so I did it.
When I went down for the immunotherapy trial, I had to get EKGs, an ultrasound, an MRI, a PET scan, CT scan... I had to get all that stuff. The doctors and nurses were being really, really, really careful. They administered the drugs over a period of an hour and a half. I constantly had my nurse, Maria, coming in and checking on me, taking my blood pressure. Then, after I got done with the first treatment, they made me sit for an hour and a half. My first day there was eight hours. It was a long day. To the best of my knowledge, the only side effect I’ve had from this immunotherapy is, maybe one out of five visits, the next day I’ll have diarrhea. But I can’t even definitely attribute it to that.
After two treatments, they scanned me and they could see shrinkage. Then two more treatments and they scanned me again and they could see more shrinkage. It has now been six years since I was first diagnosed and the immunotherapy keeps the cancer in control. I go every three weeks for my treatment and have 20 days in between to do what I want to do.
Immunotherapy differed a lot from the chemo. When you’re going to get chemo, you walk into the treatment room and they hang a couple bags and they plug you in and when it all drains out, you’re done.
When I went down for the immunotherapy trial, I had to get EKGs, an ultrasound, an MRI, a PET scan, CT scan... I had to get all that stuff. The doctors and nurses were being really, really, really careful. They administered the drugs over a period of an hour and a half. I constantly had my nurse, Maria, coming in and checking on me, taking my blood pressure. Then, after I got done with the first treatment, they made me sit for an hour and a half. My first day there was eight hours. It was a long day.
Well, everybody is different. I don’t know what everybody’s goal is. I don’t know how old they are. Like Dr. Herbst says, “This isn’t about a cure. It’s about treating cancer like diabetes.” You take your medicine, and you go on with your life. I have had to make zero lifestyle changes. Nothing. I feel great. I tell Dr. Herbst, I don’t even consider myself having cancer anymore, although I know I do.”
Provide guidance and encouragement to others going through their journey with cancer immunotherapy treatment.
*Immunotherapy results may vary from patient to patient.
Cancer Research Institute | National Headquarters
29 Broadway, Floor 4 | New York, NY 10006-3111
National Handwriting Day is Saturday, January 23, 2021. Challenge yourself in 2021 with our '21 Challenge to journal, get creative, correspond with friends, or anything else that brings joy and reflection.
Terence Friedlander, M.D., answers questions about immunotherapy for bladder cancer from the 2020 CRI Virtual Immunotherapy Patient Summit.