Published on August 31, 2021
My Regeneron Monoclonal Antibody Infusion Experience
After Paul Kane was exposed to COVID-19, he received an emergency infusion of Regeneron monoclonal antibodies, which were recently approved by the FDA for use in immunocompromised individuals. In this interview, Paul meets with Patient Power co-founder Andrew Schorr to discuss his infusion experience and offer advice to fellow individuals with CLL.
Transcript | What It’s Like to Get an Antibody Infusion After Exposure to COVID-19
Andrew Schorr: Hello. It's Andrew Schorr from Patient Power in San Diego. Joining us from Charlottesville, Virginia is Paul Kane, my brother with chronic lymphocytic leukemia. Paul, thank you for being with us.
Paul Kane: My pleasure.
Andrew Schorr: Paul, you've been living with CLL since 20-
Paul Kane: 15.
Andrew Schorr: 2013?
Paul Kane: No, 2013. Yes.
Andrew Schorr: And thank you so much for being in a clinical trial for the drug acalabrutinib (Calquence) which has been working for you for a number of years.
Paul Kane: Thank you, Dr. Bird.
Andrew Schorr: Thank you, Dr. Bird. And you get treatment at the University of Virginia, Dr. Michael Williams, who's world-renowned as well. So, you have a great, great team.
Paul Kane: I do.
Andrew Schorr: But there's this overlay. COVID-19. Your wife, Cynthia, is a dentist. She's very careful but she's around people all the time. And then you go on vacation just less than two weeks ago, to where you've been going for years on the North Carolina coast, wearing masks, being careful as a CLL patient.
When Were You Exposed to COVID-19?
Paul Kane: Very careful.
Andrew Schorr: What happened with Cynthia?
Paul Kane: We went to the same place we've gone for 15 years, which is a very quiet beach, Indian Beach. And we stay at the same place, and we didn't go last year. And Cynthia really wanted to go this year. I did not because of the Delta. I decided at the last minute to go and made my wife and son very happy. I've a 17-year-old son. So, we left on Sunday, the 8th-
Andrew Schorr: Of August.
Paul Kane: Of August. And we were having a very nice time, being very careful. We were basically masking from the unit until we got to the beach which was always windy. And I never went anywhere else. Cynthia and Garrett played putt-putt a few times, and Cynthia went to the grocery store and went to pick up pizza, always wearing a mask. And on Thursday, four days later, she told me that she had a little bit of a sore throat and some congestion. My wife never complains. And she's tough as nails. She's a cancer survivor. She'd have chemo and be at work the next day.
So we panicked, and she panicked for me. We packed up the car. We drove six hours home with her sneezing in the car. Windows open, masks on. We get back to Virginia and she got tested immediately and she tested positive. And the doctor told her that since she's symptomatic, that the quick test was 99% accurate and they weren't even sending the PCR test in.
Andrew Schorr: All right, let me just pick up the story a little bit. So, at the very end of July, the FDA gave emergency extended approval for a monoclonal antibody, Regeneron, for immunocompromised patients who had been exposed to COVID, but not yet diagnosed.
Paul Kane: Exactly. Either way, yeah.
Andrew Schorr: And you quickly found out in consulting with your doctor and being tested, that was you. So, a few days later, you're in the emergency room in isolation at the University of Virginia. Tested, you're negative. But now this new option Regeneron is authorized, and you get it.
How Did You Decide to Get the Regeneron Monoclonal Antibody Infusion?
Paul Kane: I didn't hesitate. Dr. Williams told me Saturday morning that this was a no-brainer and that if I, by getting this infusion, it reduced my chances of severe illness progressing and hospitalization by up to 75%. And he said, I highly recommend this. He called the director of the ER himself, got me right in there. And I met with their doctors, the pharmacist in the ER, the nurses, and I signed off. And the first time they've ever given it in the ER there, they usually give it in the COVID clinic, but I didn't care. So, I waited there…
Andrew Schorr: And you were part of this new group. So here you are now, we're about six or seven days later. So, Paul, your wife is in quarantine upstairs. You're in the basement.
Paul Kane: Basement dweller, yeah.
Andrew Schorr: She feels like she has a bad cold. You feel… How do you feel?
Paul Kane: I've had symptoms just like her from day one. They said I could have picked up another virus and allergies, whatever. I mean, being out of my environment at the beach, which I haven't done for over a year and a half. But I'm not totally out of the woods yet. I was tested in the hospital. They told me it was too early in infection. Then they tested me two days ago, which was day five. And it still came back, non-detected. But Dr. Williams is going to have me tested again on Monday before I'm in the clear.
But I feel much more comfortable at home now. I'm not panicking, worrying, about ending up in the hospital at this point. I'm much more relaxed. The infusion was a piece of cake. It took 30 minutes, no reactions whatsoever, no side effects. It's really a tremendous comfort to know that I've had this, I'm protected now for an additional, probably 60 days.
And if I'm re-exposed, I can get this infusion again. I don't have to test positive. If I've had direct exposure, or any CLL patient — I urge you guys to take a look at what Andrew is going to tell you, but I'm going to tell you — and have comfort in the fact that this REGEN.COV, C-O-V, infusion is an incredible weapon for all of us with CLL to have. If we either test positive or have an exposure that is close and that has us worried. It's a tremendous piece of tool that we have now as of July 30th, that was passed by the ECU, and it's FDA-approved for CLL patients. So, this is big. To me, this is the biggest breakthrough of good news we've had since this started.
Andrew Schorr: And as you said, you started with panic. And I think we've all been at a slow burn for well over a year, knowing the risks to immunocompromised and particularly CLL patients. We originally were told we had the good kind of cancer, and then we found out because of our lack of immunity, we were in deep yogurt should we get sick. So now fortunately, we have a tool, and you are a pioneer in this, Paul, where you don't have to be diagnosed with COVID.
Paul Kane: No. No.
Andrew Schorr: But if you've been exposed, as you were from Cynthia, no fault of her own, you have some protection. So, I think for any of us, and the doctors have said this, and I'm sure Dr. Williams has said this and said this to other patients, if you suspect you've had direct exposure to someone with COVID and you're living with CLL, tell your doctor. And then make a decision together whether this tool, the Regeneron COVID tool, is available for you. And Paul, where's your head at now, going forward? How do you feel?
Paul Kane: I feel like I've been living in such fear with a wife that is a dentist, very, very high-risk career with aerosoling. A son in high school. And I feel like I've lived in fear ever since this started. Dr. Bird always said, CLL is the poster child for what you don't want to have with COVID. And now with this Delta variant, it's even more important.
In this last week when I had found this out, the vaccines are great if you get any benefit from them, which is a big question mark with those of us with CLL. They're great if you get benefit, and you get sick; they'll help you hopefully. But most of us aren't going to get a benefit from the vaccine. So, this not only gives you a benefit, but it gives you as much or more of a benefit than being vaccinated in the short run, if you're exposed or have COVID.
What Advice Would You Give to Fellow Patients With CLL?
Paul Kane: What Dr. Williams told me is it's imperative that you get the infusion quickly, within 48 hours of having symptoms. So, I would urge everyone with CLL to talk to their doctor, their caregiver, about this option, and so they'll know that if their local hospital has it or not. It's not available everywhere, but it is becoming more and more widely available now.
Andrew Schorr: Well, Paul Kane, thank you for sharing your story. You're a pioneer for all of us, believe me. If I find out that somebody around me has potentially exposed me and I don't have to wait until I lose my taste or smell or da-da-da, I'm calling my hematologist pronto, and hopefully can get the same benefit you have. We wish you all the best, Paul.
Paul Kane: I’d like to say one more thing. Dr. Williams as well told me that my wife could get Regeneron. My wife has been vaccinated with Moderna, but he told me that if she wanted to, she also could get it even though she's not a CLL patient or immunocompromised.
Andrew Schorr: As an outpatient, she could. And so, to be clear though, what the ruling was at the end of July was for those of us who are immunocompromised, we don't have to be diagnosed. It's just a question of whether we'd been exposed. Paul was. Unfortunately, it turned your vacation upside down and you're living in the basement, although it looks pretty comfortable down there.
Paul Kane: It's not bad. It could be worse.
Andrew Schorr: Well, Paul Kane, all the best to you in Charlottesville. Thank you for sharing your story. I know that there are thousands of CLL patients who were listening carefully and hopefully if there is a fear of exposure, call your doctor and see if this monoclonal antibody, Regeneron 30-minute infusion, is right for you. Thanks for sharing that.