For Bob Carlson, 71, from Hebron, CT, 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.
The braking molecule that MPDL3280A blocks is called PD-L1, which is often found on cancer cells. Cancer uses PD-L1 to disarm attacking T cells and in that way avoids destruction by the immune system.
You don’t even have to miss work. You can go down and get your treatment and that’s it.
Bob started the immunotherapy trial in August 2013, and so far has had a very positive response. He and his wife, Julia, are back pursuing their hobby of wildlife photography. We spoke with Bob about how his experience on immunotherapy differed from his previous therapy and how he hopes that it will be FDA-approved soon.
How did you first find out that you had cancer?
Bob: 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. I went to a local oncologist and he treated me with chemotherapy for 16 months.
How did you feel?
Bob: I was really sick. I mean sick, sick. I had no power. I was nauseous all the time. They finally found something that would quell my upset stomach—a patch that you can put on that really does a great job of calming the nausea. But I was weak, I had mouth bleeds, nose bleeds, you name it—coughing, fevers, extremely low white cell count.
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 said my only hope was to go to Yale.
Why did you decide to do the immunotherapy trial?
Bob: I wasn’t ready to die yet. When I was on chemo I was ready to die because I felt horrible. Death would have been welcomed. It took a whole year to get them out of my system. When I started feeling better, I said, “Well, I’m not ready to die yet. I’ll try it.”
What did Dr. Herbst tell you about the immunotherapy and how it worked?
Bob: He told me that it retrains my T cells, and that hopefully the retrained T cells would attack the tumor. If nothing else, it might stop it from growing and spreading.
What was it like being treated by Dr. Herbst?
Bob: Wonderful. Roy’s a nice guy. He really is. He answers all your questions. Nothing is too stupid to talk to him about. I can ask him anything.
Can you describe the process of receiving the immunotherapy treatment?
Bob: First of all, it 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.
The second time I did it, they did basically the same thing only they administered the meds over an hour instead of an hour and a half. The third time they did it, they administered the drugs over half an hour. And now it’s always half an hour. Last time was my 23rd treatment. I was supposed to stop at a year, but Dr. Herbst said I’m doing so well he was going to leave me on it another year.
What have the results have been so far?
Bob: After two treatments, they scanned me again and they could see shrinkage. Then two more treatments and they scanned me again and they could see more shrinkage. So it’s only been the last three scans that there’s been no change.
No change is good news. Is there still evidence of the cancer?
Bob: Oh, of course, yes. It’s still there. You can still see it. But the tumor on my adrenal gland is almost undetectable and the one on my lung is down to two centimeters. It started off at five and a half centimeters. The one on my adrenal gland was three centimeters, and it’s barely noticeable now.
How do you feel?
Bob: Fine. No side effects. To the best of my knowledge, the only side effect I’ve had from this immune therapy is, maybe one out of five visits, the next day I’ll have diarrhea. But I can’t even definitely attribute it to that.
Is this an experience you would recommend to another patient?
Bob: Well, everybody is different. I don’t know what everybody’s goal is. I don’t know how old they are. But if this drug gets [FDA] approved and they can move it up to a first-line drug, it would be excellent. You don’t even have to miss work. You can go down and get your treatment and that’s it. Then you go home and it’s fine. I always kid my nurse, “You know, you could have water in that thing. I wouldn’t know.” Because there are literally no side effects.
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.”
Is there anything else you’d like to share?
Bob: I would hope that the government approves this quickly. I hope that the results I’m getting are being enjoyed by more people. I know that the success rate of this drug is not as high as I’d like it to be. I understand it’s about 25%-30% of the people that have amazing results on this, which is pretty good. But that means there’s 70%-75% of the people that still aren’t making it. I hope that they find drugs for everybody.
Update: As of 2020, Bob is off the clinical trial and receiving atezolizumab as part of standard treatment. He continues to travel and photograph with his wife, Julia.