Andrew Schorr: My Chronic Lymphocytic Leukemia (CLL) & Myelofibrosis Story

Andrew Schorr was a healthy runner with a wife and two young kids when a surprise cancer diagnosis changed his life: chronic lymphocytic leukemia, or CLL.

Schorr recounts learning and processing the CLL diagnosis, connecting with other CLL patients through online communities and in-person lunches and benefitting from 2 different clinical trials.

This is part of our introduction to a new series here on The Patient Story, “Cancer Friends,” featuring Andrew Schorr and Esther Schorr. The two co-founded PatientPower.info, a resource for other cancer patients and caregivers to help them through their diagnosis and treatment.

Join us every Sunday for a new “Cancer Friends” episode, airing on our video channel here!

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

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How did you learn you had a blood cancer 26 years ago?

Processing his CLL diagnosis

[My doctor said] If your white count is elevated and you have no reason like an infection, it could be leukemia.

Dun dun dun. You’re really shocked. The only thing I knew about leukemia was the solicitations for the Leukemia & Lymphoma Society, typically with somebody knocking on your door and then showing you a picture of a little 4- or 5-year-old kid with acute leukemia. 

That’s all I knew. It wasn’t really clear whether leukemia was a cancer that could affect adults. I didn’t know any of that. He said, “I’m going to refer you to an oncologist.” It was a beautiful spring day, as I said, in the evening. Esther and I took a walk in the park. I was 45 years old. We had 2 small children. 

I was thinking, “This is it. I’m not going to live very long.” Leukemia can be a fatal condition, and I thought, “Have I had a satisfying life? And leaving Esther with 2 kids. Oh, my God.” It was pretty tough.

»MORE: Patients share how they processed a cancer diagnosis

CLL lunches

Just to continue for a second, it became wonderful that even online, I knew I wasn’t alone. Esther, my wife, knew there were other spouses who dealt with this as well. In this little online world, very early in 1996, I said, “Hey, I’m in the Seattle area. Anybody else here?” 

What would you say to someone who has just been diagnosed?

The first thing I would say to particularly a new patient or a family member is the same thing that a veteran patient, Granny Barb Lackritz we called her, said to me, and that is, “Chill out.” 

Even more so now, because the options in CLL for getting treatment that will be effective for a long, long time with others coming is very real. I think there’s a tremendous time of hope for all of us and it’s working. That’s part 1. 

Part 2 is that one person’s story may not be your story. It can be very individualized. There can be different genetic, genomic differences that make your situation different. You may have other illnesses that affect overall how you’re doing. 

That’s why it’s so important to get personalized care. If you do, for the CLL, there are some very effective options. If one of them peters out on you, there’s something else. I think it’s a very hopeful time.

Figuring out the logistics of collaboration between MD Anderson and your local HMO

First of all, when I saw the second opinion at MD Anderson, my HMO doctor was not in favor. He said, “We’re not going to pay for you to go to Houston, Texas, from Seattle. They’re going to say the same thing and that is, ‘Start chemotherapy now.'” 

I said, “No disrespect to you, but this is my life on the line. I’m going to go even at my own expense.” And I did. 

Clinical trial

We had 2 little kids, so Grandma and Grandpa, friends, aunts, uncles [helped]. Esther and I were going to be in Houston for at least a week. When you have little kids, that’s a lot of juggling to do. But we pulled it off, went down there, stayed in a little hotel that MD Anderson has across from the clinic, and then got the treatment as an outpatient. That worked out. 

As far as expense goes, we paid for the travel, but that seemed like a small expense for the benefit it was going to get. Otherwise, I believe that the care was covered by what insurance I had. We had to pay for travel and work out the family logistics. It was an adventure. 

The trial, I fainted the first night from IV Benadryl. That was an experience — the nurses giving me smelling salts, and I hit my head on a bar when I fell. My mouth was bleeding. That first infusion took about 8-and-a-half hours. It was on the final night — we were watching TV in the little room — of the TV show “Survivor.” I was feeling like a survivor on the island. 

Then Esther wheeled me back to the hotel across the way in a wheelchair at like 3 in the morning. The trial worked out and it ended up with a 17-year remission, so I’m very grateful for that.

What happened is that I got this combination therapy known as FCR (fludarabine-cyclophosphamide), 2 chemo drugs, and a targeted monoclonal antibody, rituximab. I was like patient number 70 and I got that combination 10 years before it was approved as a combination by the FDA. 

Now, would I have been alive had I just had chemo and not had this Rituxan added and been in this trial? I don’t know. For me, it provided a real advantage and a head start on state-of-the art treatment. I’m very grateful for that. I think it saved my life.

What were you thinking during this process?

There are a few lessons in what I’ve been through. One is that you need to identify a knowledgeable health care team. Ideally, if you believe that medicine moves forward, you need through them — or maybe even additional resources — a window into what could be next or better for what you have. 

The importance of speaking up for yourself

I think you need to be respectful of the doctors and nurses you’re dealing with, but recognize that they may have a lot on their plate. My HMO doctor was tasked with treating every cancer that any member of the HMO would have, with leukemia maybe not being high on the list. 

Breast cancer, colon cancer, lung cancer be much higher. He really had spent a lot of time being up on that. Was he necessarily up or totally informed of the latest research for what I had? Maybe not so much. 

Lessons about Living Life

What was it like going from the clinical trial back to normal life?

What guidance do you have for people?

First of all, I’ll mention something about social media. Often the people who post on social media have some more urgent, serious concern. I didn’t post anything. 

I just went on with my life and CLL faded in the rearview mirror. I knew I still had it, but it wasn’t affecting my life. I think as you go on, or if you’re in watch and wait but you have no active symptoms that are affecting you, just go on with your life. Yes, you may hear about somebody who has some issue, but today most of these issues can be treated effectively. 

If you have the right knowledgeable health care team, that’s part of your responsibility to secure that team. But if you do have the right team, then if you’re in watch and wait or you’re in remission, I think it’s about, “Go do what you want to do.”

My pattern of CLL is to know that it’s there, that it could raise its head again. We’ve talked about this sometimes among patients: Whac-A-Mole. We have effective tools to bop it on its head and then go on with your life.

Editor’s Note: obinutuzumab, or Gazyva, and high doses of steroid

That was because I’d already been diagnosed with another condition, so my CLL doctor had to be very thoughtful about how to treat CLL without negatively affecting the other condition, myelofibrosis. He did it right. It worked out well. 

DVT and Myelofibrosis Diagnoses

We were in a program. My wife worked for Microsoft and they actually were testing doctors making house calls. The doctor called, and I said, “I’ve got this pain in my leg.” 

He said, “Is your calf red?” 

I said, “Yeah, it’s little red.” 

“Is it warm to the touch?” 

“Yes, it is.” 

“Do this maneuver with your leg: turn your ankle, do the stretcher. Does that hurt?” 

I said, “Yes, it does. It’s a pulled muscle, probably.” 

He said, “I don’t know about that.” 

I said, “Do you want to come make a house call?”

“No. I want you to go to the emergency room.”

“When?” 

“Now.” 

I said, “Do I need to call an ambulance?” 

“No.” 

I said, “My wife and kid are asleep.”

Anyway, I finally called my wife. Then the family heard about it, and they’re all showing up the next morning. I’m hospitalized for this DVT, which you can die from if it goes to your lungs, called a pulmonary embolism. All right. 

Clinical trial #2

As I was finishing treatment over a few days, there was a guy who’s sitting in a chair in my room. “Who are you?” 

He said, “I’m a clinical trial coordinator. We have a trial for a blood thinner to prevent DVTs, recurrence of DVTs. Would you like to be in it?” 

I thought, “I’d been in a clinical trial for chronic lymphocytic leukemia. It worked. Now I’ve got this other thing. I don’t know what the hell it is. Maybe that’s a good idea.” So I signed up. 

I was in the clinical trial for a blood thinner, and they were monitoring me, which they do very carefully when you’re in a clinical trial. They do all kinds of stuff, EKGs and blood tests and regular visits. You’re like a VIP. I love the attention. It’s great. 

Then the principal investigator called me and said, “Something’s out of whack with your blood. Not blood thinner stuff. You need to go back to your hematologist here in Seattle.” 

So I did, and he drew 10 tubes of blood. Okay, then I forgot about it. I was in the trial center. I went to the major convention for blood cancers, called American Society of Hematology. I tried to go as sort of a reporter every year. 

Myelofibrosis diagnosis

I was getting out of the taxi one day there at the convention center, and the phone rang. It was a Seattle doctor. He said, “I got to talk to you.” 

I said, “What?” 

He said, “You have a blood cancer.” 

I said, “Chronic lymphocytic leukemia? I’ve already had that.” 

He said no. He said, “Myelofibrosis.” 

“What the hell is that?” 

He said, “It’s scarring in your bone marrow.” 

“How do you know?” 

Maintenance Therapy

Can you describe what it’s like to be the person who has benefitted from clinical trials twice?

When you talk about cancer, I wish we could say there’s been miraculous progress in every cancer. That’s not true, but there’s been a lot of progress, and it continues. I think I’m just a really lucky guy that the illnesses, the cancers that I’ve been diagnosed with, have been treatable in ever more refined ways as I’ve lived with them. Thank you, God, that I’m living at a time where there’s been progress for what I have. 

I think my advice to patients and family members is turn over rocks. Not with false hope, not somebody selling you snake oil, but with validated, real evidence-based information. Is there somebody or something for you that could make a difference and is an example of medical progress for what you have? 

Now, I’ll step back for one second. In cancer, there are a lot of people who don’t have the appropriate testing or the most knowledgeable pathologist look at their blood or their tumor type. They get a misdiagnosis, or there’s not a clear test that’s done to show their version of a cancer. 

Job 1 is to know what you’re dealing with. Job 2 is to have a health care team that’s knowledgeable in the full range of options.

Pills and hemoglobin shots

That Jakafi I took, I don’t remember what color the pills were. Sometimes the dosage moves around over the years. I take 4 of these red Inrebic pills every night, and then your blood counts are monitored. My hemoglobin was going down, and going down lower than I’d ever had before. 

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