Non-Hodgkin’s Diagnosis

In 2013, I was losing weight, didn’t feel good, and was always tired. I was admitted to the hospital for three weeks to run tests and they discovered I had lymphoma. Dr. Favaro was the on-call doctor then. I went with him when I got out and I’ve been with him ever since.

Eight years later, it came back and this time, it was the lymph nodes in my neck. We did treatment again but no radiation this time.

Less than a year later, it was back for a third time. The glands in my neck got swollen, so I knew something wasn’t right. I thought it might go away, but it never did, so I went to see my oncologist again.

Dr. Favaro said, “We have to do something different.” I looked into CAR T-cell therapy, but the problem was it required 24/7 care. My wife was still working, so we couldn’t do that. We then looked at Epkinly and we’ve been doing that since February.

Starting on a Newly Approved Treatment

Initially, you go in for a shot once a week. It goes in the stomach. It’s an easy pinch. You don’t feel anything and it takes less than 30 seconds. A rash will show up and I use medication on that, so that fixes that itch.

In addition to that, you get steroids. They do blood lab work to make sure everything’s going okay. You get fluids. Since I was on clopidogrel, a blood thinner, they couldn’t put a port in, so they put a PICC line in. The bad news is it has to be flushed every day and that was a challenge because my oncologist’s office isn’t open on weekends. My wife could do them, but when she went on a week-long vacation, I had to go to the local hospital.

Importance of Having a Care Partner

Without my wife Chris, I don’t know if I could have gone through all of this. When I get my Epkinly shots, we text back and forth. The shot only takes 20 seconds, but we do lab work, so I’m there for maybe an hour plus a 45-minute drive.

Chris has a distribution list that goes to all the kids. We’ve got six kids between us and only one is within a half hour; everybody else is further away. When I was in the hospital, Chris would send daily messages to the kids.

My sister lives in the Charlotte area, so she’s kept in the loop and has become a mentor. She says, “Did you tell the doctor this? Did you tell the doctor that?” She’s in constant contact.

Planning Ahead

We could always do CAR T-cell therapy in the future since Chris will retire soon, but if Epkinly continues to work, I’ll stay with it. It’s easy. You go in for a shot once a week and it takes 20 seconds.