The Patient Story’s new series “Cancer Friends” features Andrew and Esther Schorr. They 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!
In this segment, Andrew and Esther discuss how to plan for the future while dealing with the uncertainty of a cancer diagnosis. They tell the story of deciding to have another child, as well as their mentality of saying yes to life.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
If the plan has to change, the plan will change, but we’re not going to assume that we can’t do those things.
Esther Schorr
Planning with Cancer
Andrew: Hello and welcome to another edition of Cancer Friends. I’m Andrew Schorr.
Esther: And I’m Esther Schorr.
Andrew: We’ve been dealing with cancer for 26 years, me with a diagnosis of chronic lymphocytic leukemia. Then about 11 years ago, the second blood cancer diagnosis, myelofibrosis. But here I am, and Esther’s been every step of the way. We’ve been married 37 years.
We’re doing several segments on the uncertainty that comes with a cancer diagnosis and how you cope and overcome it. What we want to talk about now is, how do you plan? How do you plan for today, tomorrow, next month, next year? [Esther], you’re a planner.
Esther: I am. We’re going to have a chat about this. You and I have different approaches to planning and that has definitely played a part in how we’ve planned after your diagnosis. My first reaction was, “How do we plan anything?”
Andrew: Because I’m going to die.
Esther: It took a little while, took a little counseling together and separately, and it took a little bit of distance from the initial shock to say okay. The way that I’ve planned it in my head, for myself and then for us together, is like planning for the best and anticipating the possibility that longer-term plans may change.
That’s kind of a coping mechanism for me, saying, “You’re here now. We’re here together. We have 3 kids. They’re now grown.” When Andrew was diagnosed, two of them were really little.
[One wasn’t born] yet. At least for me, the planning was, okay, let’s plan for the next year. Let’s see what’s going to happen.
Having another child after a cancer diagnosis
Andrew: Well, let’s tell that story. I was 45 and didn’t get married until I was 35. We had these two little kids, Ari and then Ruthie, about 4 years apart. We’d always wanted to have a third child. I was diagnosed with the most common adult leukemia, chronic lymphocytic leukemia — with the emphasis on “chronic.” Not acute, but chronic. So I had to learn what that meant.
Esther: That was still cancer.
Andrew: You’re living with cancer. My doctor at the time was a world-famous doctor, Michael Keating at MD Anderson in Houston. Esther and I said, “Hey, we had hoped to have a third child. Should we?”
Esther: He gave me a big hug, and he said, “Go have your third child. By the time Andrew needs treatment, we’ll have something good for him. You should live your life.” They did, and Andrew went into a clinical trial and got a long remission. Meanwhile, that third kid is 25 years old and in the music business.
Andrew: We call him the miracle baby.He hates that.
Esther: But at the time, that was a big planning step.
Andrew: That was a major plan. Have the child, so now you’re in the day-to-day stuff of raising three small children. Anybody who’s been through that knows they need, what they need, when they need it, which is often right now. The baby’s crying. Somebody needs a bottle. Somebody needs a ride to school or to soccer practice.
Esther: The other thing I think we have to pay some attention to, or at least acknowledge, is you mentioned “chronic.” All the messaging we were getting about your diagnosis was, “This is not a do not pass go and something terrible may happen right away, or even just treatment right away.”
We were fortunate in that we had the time to plan and feel comfortable doing that. I just feel like in this conversation, we have to acknowledge that somebody diagnosed with acute cancer may have to approach planning a little differently than we did.
Andrew: Inflammatory breast cancerBoom. Acute myeloid leukemia. Boom.
Esther: Or a stage 3 or 4 of something.
Andrew: They say, “We’ve got to do this quickly.” Then you’re saying, “Oh my God.” Fortunately, we were given some time. My friends who’ve dealt with CLL, chronic lymphocytic leukemia, know that you often go many years — for me was 4 and a half — until you require treatment. Swollen lymph nodes, enlarged spleen, fatigue, high blood count, etc. Then there are other shoes that drop, and then you have to revise your plan a little.
Esther: I think during the time that you were in treatment, at least that first time in the clinical trial, I remember thinking, “What’s it going to look like on the other side in terms of planning?” The hope was you’d have a long remission, and we could sort of go back to whatever normal was. To a great extent, we did.
Planning for the future now
Esther: If we sort of step back from it, I think our journey together, a lot of it has been we’re going to just continue to make our plans and to live our life. Even now, 20-something years later and a second cancer diagnosis, we’re planning stuff that’s 6 months from now or a year from now. In my head, Andrew, it’s like we’re going to just go do this. If the plan has to change, the plan will change, but we’re not going to assume that we can’t do those things.
Andrew: You make some accommodation. I get some shots every 3 weeks now, I take oral medicine every day and I get an infusion once a month. I have to work around that or fudge those schedules a little. We like to travel, and now hopefully with less COVID, we’re starting to do that carefully.
We did something last night that we hadn’t done before, and that is we bought airline tickets. We paid more on the advice of our doctor [for] refundable tickets. We said to one of my doctors, “Hey, we want to take this trip.”
Esther: And it’s not until the beginning of next year.
Andrew: She said, “You probably can, but get refundable tickets.” So that’s in her hip pocket.
Esther: We’ve taken that approach with a lot of things. There have been milestone events that have come up in the family, where we just proceeded with planning a daughter’s wedding or planning to go visit relatives in another state.
It’s kind of like we’re planning to do it, and if we can’t do it, we’re going to just have to accommodate it. We have to have things to look forward to. That’s a big part of the planning that you and I do together. We need stuff to look forward to.
Being at important events
Andrew: Some people have heard this story before, but if you haven’t, I’ll repeat it. When I was diagnosed, our [oldest] son, Ari, was about 7. We explained that Dad had a sickness in his blood. He said, “Will you be at my bar mitzvah?” [It] seemed to him like it was way in the future.
Esther: That would be when he was 13, and he’s 7.
Andrew: Six years later. Right. I didn’t know, but I said I would. Now, fortunately, with treatment, I was in remission. Flash-forward to the parents, Esther and I, being in the front of the synagogue, in front of all of our friends and family, next to Ari, who’s the bar mitzvah boy. We give a little speech. My speech was recounting telling Ari that I plan to be at his bar mitzvah, but I didn’t know. Now, six years later, here I am. Everybody started crying.
Esther: The same thing happened at our daughter’s wedding, which was three months ago.
Andrew: It had been put off by COVID. Lots of planning. Would I make it? It was a great wedding, and I did. Now we continue to plan.
Saying yes and being spontaneous
Andrew: I believe in saying yes. Somebody is going to call and say, “Hey, can you go out to dinner tonight? I know it’s short notice. Can you go?” Sitting outside now, with COVID. I always want to say yes. Right, Esther?
Esther: Yeah, 9 times out of 10 (or 9 and a half times out of 10), we both say yes.
Andrew: Yeah, or I’ll say to Esther in the morning — we wake up, and I’ll say, “It’s a beautiful day. Let’s go for coffee.” It costs like 4 bucks a cup now, whatever.
Esther: Despite the fact that we have an espresso machine.
Andrew: Yeah, but I just say, “Yes, let’s go for it.”
Esther: [Some of] that go-for-it attitude, I had to learn from you. You said at the beginning of this that I’m a planner, and that meant that I was less spontaneous about things. I sort of needed to know when the next thing was going to happen, and if this happened and that didn’t happen. More of a real planner.
You’ve really taught me through all of this to be more spontaneous and live in the moment. I think in some ways, your cancer journey has impacted mine as a care partner, because I’ve learned — what have you said? That life is a terminal condition anyway?
Andrew: Right.
Esther: When people have asked me, “How do you stay positive married to somebody on a cancer journey?” I said, “Well, I have two choices. I can either crawl in a hole and be depressed and not live life, or I can just say, ‘You know what, I’m going to worry when I need to worry.'”
Andrew: Spontaneity, I would say, is a really big deal. Live your life that way to the extent you can. Now, look, we’ve been married 37 years. Conversely, some people live alone. But there’s a world out there. There are neighbors. Maybe you go to a church, maybe you go to a synagogue, maybe it’s the Elks Club you can join.
Whatever it is, there are people that you can interact with, and there are opportunities that come out of those relationships. Maybe it’s just reading the book you always want to read. Take time for yourself. I believe that is a wonderful strategy.
I really believe that the health care community — and health care is kind of a screwed-up industry, but there are good people in it. There are people really fighting for us to do better on our cancer journey. There are people trying to research cures, so be their partner. Every day, work with them. If they make recommendations on things you can do yourself to help yourself feel better, do that.
One other thing I would just mention. When I wake up in the morning, I sit on the edge of the bed for a minute, and I kind of take stock. Some people say, “Do you have 10 fingers and 10 toes?” But I say, “Does it ache anywhere? Do I have energy?” Because my energy is different from day to day. But when I get up, I say, “I’m going to make it the best day I can, however I feel. This is a day — I’m religious — that God has given me, and I’m going to make the best of it.”
Esther: I think our partners and caregivers need to do the same thing. If somebody that you love is the patient or the survivor, the care partner has to adopt as much of a positive, forward-looking outlook as they can, too. How you interact with the world and with people that you love is really important for their mental health and emotional health as well.
Using the time you’re given
Andrew: Recapping a couple of things. We all live with uncertainty. People have said this to you probably: “Well, you could get hit by a truck tomorrow.”
Esther: And that’s true.
Andrew: And that’s true. What does the medical team try to give you? Time, so you have to decide how you’re going to use that time. You’ve been given time, more than probably you would have had if you did not any treatment at all. The cancer just ran amok, if you will. How are you going to use that time? That’s what I think about.
Then I hope that there are better medicines that will come along to give me more time or even, knock on wood, a cure. Keep at it. Be spontaneous. Have those relationships. Look on the bright side, because there is brightness. There has been progress.
You are here today watching this, and you didn’t know you would be for sure. I hope this gives you a little inspiration. I know that’s the way Esther and I feel. We have other programs in this series for our Cancer Friends, which is you, on coping with the diagnosis, overcoming it, your relationships with others, and also the role of care partners.
Esther: We’re looking forward to having other individuals and couples join us.
Andrew: Right. Thank you so much for being with us. I’m Andrew Schorr.
Esther: I’m Esther Schorr.
Remember, knowledge can be the best medicine of all.
The Patient Story’s new series “Cancer Friends” features Andrew and Esther Schorr. They 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 segment focuses on telling family and friends about cancer. Andrew and Esther are joined by their daughter, Ruthie Schorr Menaker. She shares what it was like growing up with the looming uncertainty of cancer. She also describes how open communication helped her family.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
It’s not the whole story of our lives. That’s not the only thing. You are not just a cancer patient. You’re my dad, and we’re facing cancer as a family.
Ruthie Schorr Menaker
Introduction
Andrew: I was diagnosed with chronic lymphocytic leukemia in 1996 and then a second blood cancer, myelofibrosis, in 2011. It’s been a long time. We are recording some segments for The Patient Story on coping and overcoming the uncertainty of living with a cancer diagnosis. In each segment, we’re talking about different issues. In this one, we want to talk about what comes up for people as you cope with the diagnosis. That is, who do you tell?
Esther: Before that, we need to say that we also recognize that it’s not just the patient who is coping with uncertainty. When there’s a cancer diagnosis, the family and people who love the patient are also uncertain about what the future holds.
Growing up with the uncertainty of cancer
Andrew: I’m sure Esther is going to talk about it, but we have the opportunity for 1 of our 3 children to join us. That is our 29-year-old daughter, Ruth Schorr Menaker, who joins us. Ruthie, thanks for being with us. When I was diagnosed in 1996 with chronic lymphocytic leukemia, you were3 years old, so you have no recollection of that?
Ruthie: Nope.
Andrew: Okay. But time went on. What did you know about Daddy having a serious illness?
Ruthie: There was a period where real uncertainty was, kind of during a time where I wasn’t fully processing what was going on in the situation, so during your watch and wait period before you went to treatment. Then when you did, there were a lot of dynamics outside of you actually being sick that impacted my view on what was happening.
You were leaving to go to MD Anderson. Mom went with you. There was a lot of movement, and I think that’s when I started to kind of feel like something was going on. But I was pretty young at the time, so I don’t remember a lot of the granular details. I knew something was going on. As you continued to get treatment and other things, and you came back to Seattle and other things happened, it became more evident that this was going to be an ongoing part of our life and wasn’t for necessarily a finite amount of time.
Andrew and Esther with Ruthie in 2019.
Esther: Do you remember at all, Ruthie, there was a lot of uncertainty for the family and what was going to happen to Dad next. As you were growing up, do you remember what you were thinking about the impact on what might be happening for you and for your siblings?
Ruthie: I think the biggest thing was there had been things that were just not possible for us to do when Dad was going through treatment and when we were kind of adjusting to family life. I think in terms of uncertainty as a kid, the main kind of questions were:
When is Dad going to be around to do this stuff?
Is Dad going to be around to do this stuff?
As I got older, after you were in clinical trials, I’m going to have my bat mitzvah. Is my dad going to be at my bat mitzvah?
I’m going to go away to summer camp. Is something bad going to happen when I’m gone?
But I will say, I think part of it was impacted by the fact that I really grew up with it. It’s hard to think about memories [before] this happening, because I was just simply so young.
The taboo of talking about cancer
Andrew: Let me ask you about this. We lived on a place called Mercer Island, Washington, 22,000 people. Sort of everybody knows everybody. You went to elementary school, middle school, high school. You had a lot of friends who knew us, and maybe some of them knew your dad had cancer. Did it come up? The C-word is a scary word.
Ruthie: Because of the fact that it’s been so present in my life for so long, I think there’s kind of always been this edge to it that as much as cancer has been a taboo word or scary, it’s been ever present in our lives.
Since the time that you were diagnosed until now, I’ve sadly had many friends who’ve had parents, grandparents that have been sick, that have been lost. There’s a wide range of experiences that have happened to people, with cancer impacting their lives and their family. I almost think the fact that we all, you especially and me in conjunction in the discussions we had as a family, really made it less of a taboo topic to talk about with my friends.
I think everyone was very aware that it was happening, but the kind of conversations around it were, “My dad has cancer, but this is a chronic condition.” That was an adjustment in my mindset. Although I was feeling the uncertainty of it, I had just been living with it. By the time I was having these conversations, it was such an active part in my life.
Reacting to the second cancer diagnosis
Ruthie: Secondarily to that, when you were diagnosed with a secondary cancer, it was my first year away at college. I would say that experience in my young adulthood was much more rattling than what I remember of the early times of uncertainty in your cancer journey.
I was old enough to understand all the implications and uncertainty of that specific condition, which I knew nothing about, even though I knew all about the cancer that you had had at that point for 15 years. I was living far away, I didn’t really understand it quite as much, and I think that uncertainty at that point in time was much more startling, personally. That’s how I see it in terms of evolving.
Esther: Ruth, you said it was rattling. What did that look like for you? What helped you during that period? I’d hope it was communication with us, but what are the ways that you were dealing with that?
Ruthie: I think definitely the first kind of piece of it was that I always appreciated, especially at that point when I was a young adult, that we did just have an open line of communication about it. Dad, when you were first diagnosed, all of us had uncertainty because we weren’t super familiar with this specific condition.
But something that brought me some peace was that knowledge is the best medicine of all. I think that when you learn about something more, it becomes a little less startling. You say, “Okay, I can understand this mechanism. I can understand why this happens.” I think that I felt some peace, too.
Maybe it’s naïve, but I think the fact that you had been living with cancer for so many years beforehand, you had been in clinical trials, and you had tried new medicines and things — I had a lot of hope in modern medicine.
This was just, although unfortunate, another thing that we were just going to have to sort out. With open communication and support to each other. [We had to] just figure out what the next thing is. Maybe it’s another clinical trial. Maybe you have to go somewhere else for treatment.
My little logistical brain was kind of like, “This is how we can approach it, even though it’s upsetting.” There were a lot of pieces that I did have uncertainty about. We came at it as a family and as [pragmatically] as we possibly could. That made it a lot less scary.
Andrew: I’m so proud of you.
Esther: Very proud of you. What you just said about understanding it more and having some history, that medical science was working really well for Dad. [That’s] part of how I’ve coped with uncertainty, so I just want to say it’s not uncommon.
Talking to your family and friends about cancer
Andrew: We’ll talk more about that, but there’s a flip side, too. For people watching, not everybody’s been fortunate enough to be a long-term cancer survivor. Advocates are where there’s been a lot of progress. As we mentioned, we used to live on Mercer Island, just 22,000 people. Among your friends, you have a couple in particular where the parent died from cancer.
Ruthie: Correct. Yep.
Andrew: Given that it’s a — I don’t want to say a crapshoot, but there’s a lot of uncertainty about cancer, how your body will respond to treatment. Will there be treatments? Will there be clinical trials? What would you say to our viewers? If you have an opinion on whether it’s better to talk to your kids or some limited family members? What do you think?
Ruthie: I feel like you just spoke to the fact we grew up in an incredibly tight-knit community. The way that you’ve raised us in terms of where we live and the different social groups that we’ve run in, I personally feel as though being as open as you can be and you’re comfortable with so that you can have support around you.
With that is coupled not only for yourself and your family, for the people that you do tell, to ask them and implore them to have the education on it as well. I can’t think of anything scarier than having Sally Jo from down the road — you tell her that you’re going through something, and then she’s like, “Oh my God, are you going to die?” The question is, “I don’t know. I don’t know how this is all going to play out.”
But having someone in your ear saying that, [someone who] maybe doesn’t understand the situation or the complexities of it, can really sow a lot of fear. I think the other side of the spectrum of that is getting people in your corner who do deeply understand what’s going on and are as aware as you are comfortable with them being, so they can support you fully.
I’ve always felt like our approach of being that way — everything’s on the table — has been it. I just want to say to your point of whatever draw it is that someone ends up with a different or a more aggressive type of cancer. Of course, you don’t know that until you’re going through it or you’re in it.
Ruthie’s wedding in 2022.
But I remember very clearly being in my dorm freshman year when you called me to tell me that you had been diagnosed with MPN, and at that point, I didn’t know if it was like tomorrow that something was going to happen.
The battle after you understand what you’re going through is complex. I think the emotions, regardless of the level, are very real. It can be equally as upsetting no matter what it is, especially if you don’t have education on what that means or what it looks like.
Esther: It sounds like the open communication that we had as a family was helpful. Also, it sounds like you had relied on friends for support when you were away from home. Being open about it was helpful.
Andrew: Now, we should acknowledge both Esther and I have been cancer patient advocates. Ruth went to Mercer Island High School. With the American Cancer Society, they had a cancer event around the track, [with] the kids camping out and raising money each year. Ruth did it, and I was the survivor speaker a couple of times. So everybody at the high school knew.
Ruthie: I don’t think that necessarily everyone’s perfect route to support is going to be putting it on billboards or a survivor on a poster board. I get that. Just my personal experience was being open.
Truly, one of the things that I had anxiety about was this idea that I talked to somebody new who has no idea about what my story is or whatever. “Oh, yeah, my dad, he’s a cancer patient,” I say. They say, “Oh my God, I’m so sorry.” It’s like, “I don’t need you to be sorry. I just appreciate the support. I appreciate it, but there’s nothing to be sorry about.”
I think kind of changing the narrative around, “This is something that happens to us.” It’s not the whole story of our lives. That’s not the only thing. You are not just a cancer patient. You’re my dad, and we’re facing cancer as a family. But it’s not the sole thing that matters.
Andrew [To Esther]: You have friends. You have parents, family members. The same openness, you think, has been a good thing?
Esther: Yes. Ruth addressed a lot of things that I’ve always felt — understanding as much about what was going on for you as a patient, what the conditions were, what were the options, staying really up to date in information — were helpful to me.
Right alongside that was the support of my close family and my very closest group of friends. I don’t want to say that I was fortunate that some of my best friends had also, in one way or another, been through a cancer journey. But partly that understanding of what was going on for you and for me as a couple and individuals was always very helpful. Just having the support of other people, other than a couple or the person that’s closest to a patient — it’s really important to have that communication.
Andrew and Esther’s wedding.
Andrew: Well, we’re believers in it. You have to decide yourself what works for you, but it has worked for us. This is part of our series on overcoming and coping with the uncertainty of a cancer diagnosis. Look for other segments as well, where we discuss other important issues when you’re given this diagnosis of cancer. Thanks for watching and being a cancer friend. I’m Andrew Schorr.
Nick has persevered through a series of health challenges. After 13 months of self-advocating, he received a diagnosis of IgG4-RD, a rare autoimmune disorder. Then 7 years later, it morphed into nodal marginal zone lymphoma.
Nick shares his story, which includes undergoing treatment twice, setting an example for his 3 young children, and turning pain into passion
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Introduction
Tell me about yourself
I’m a family man. I am fanatical about personal growth and maximizing my humanly potential. I fortunately understand that my time here is limited, and it’s not guaranteed.
I’m somebody who tries to make the most out of every moment, every interaction, every day. I try to win the day. If I’m blessed with more time, eventually those days turn into weeks that I’ve won, and hopefully months. I try to positively create as much momentum as I possibly can.
Another thing is that I try to do it in a manner that inspires others to do the same. People want to know why you are moving the way you are, or why you carry yourself the way that you do. [It’s] so that I can open up and share a little bit of my story and my journey to hopefully positively impact that person and to leave them better than when I found them.
I’m absolutely fanatical about life and about my time here. I want to do something amazing with that time, and I want to impact as many lives as I possibly can.
I am a husband. My wife’s name is Shelby. We have been together since December of 2012. [We’ve been] married since February 22nd, 2016. That’s 6 years.
We’ve got 3 amazing boys. We have twins that are 5, and then we have a 7-year-old as well. She’s a boy mom; [I’m a] boy dad. It’s never a dull moment around here. They keep us on our toes. We always tell people we’re playing zone defense, so it’s very interesting around our family’s household.
Can you summarize why you went to the doctor years before you were diagnosed with cancer?
[Shelby and I] had only been together for 6 months, and then one night I had some symptoms that drove us to the hospital. [I] had to show some humility and ask my girlfriend at the time to take me to the hospital because I wasn’t feeling well.
‘I shouldn’t have to do this. I’m the victim here. I’m the patient.’ Yet that mentality doesn’t get you very far in this game.
Nick was very sick, but he was determined to make a name for himself professionally.Nick and Shelby at the Spartan 5K in Minneapolis.Nick is very active, including before his cancer diagnosis.
Throughout a series of tests and CT scans, the doctors found that I had an enlarged prostate, but also an enlarged heart that they claimed was an athlete’s heart at that time, which can be common in young African American men. But this was something they were pretty serious about. They told me not to play any more basketball, to cease physical activity and to go see my doctor as soon as I made it back home to Cincinnati.
As soon as I got back into town after that weekend, my visits with the doctor began. They became more and more prevalent. Shelby accompanied me through a lot of those appointments for the next 13 months.
IgG4 Symptoms: Swelling and red spots.IgG4 Symptoms: Swollen lips and mouth.IgG4 Symptoms: Hives.IgG4 Symptoms: Swelling and red spots.IgG4 Symptoms: Swollen lips and mouth.IgG4 Symptoms: Swelling of legs, feet, and ankles.
Knowing something’s not right but not getting answers
There was a lot of confusion, and I’d say a lot of anger as well. Some sadness. Over the course of 13 months, I lost about 49 pounds. I had 3 different biopsies and 2 different bone marrow biopsies. I had all types of ailments and infections or illnesses along the way that caused me pretty uncomfortable pains.
It was a long journey. To be told that “we don’t know” or “we’re not sure” or to get placed on the back burner was extremely difficult. I had to learn to advocate for myself and to advocate for my own health.
Nick and Shelby at the Taste of Cincinnati the week before going to the Mayo Clinic in 2014.Nick and ShelbyNick with Gail, his mom, at the Mayo Clinic after a series of tests in 2014.
I had to call a lot of doctors back. I had to schedule a lot of tests. I had to call and inquire on a lot of different results and blood work and make sure that blood work and those results or scans were picked up by me and taken to another doctor.
When you’re going through it, you feel like, “I shouldn’t have to do this. I’m the victim here. I’m the patient.” Yet that mentality doesn’t get you very far in this game. Unfortunately, it can lead to death or even way worse, worsening of your symptoms or illness that you currently have.
Intuitively, I knew that I needed to advocate for myself, but without Shelby, my mom, my dad, and having some great support around me, I don’t know that I would have continued to seek the help that eventually got me to the Mayo Clinic.
Nick at Mayo Clinic for his mediastinoscopy in 2014.Nick’s 2014 scar from a vocal chord biopsy.Scar and stitches from mediastonoscopy.Nick recovering from his mediastinoscopy at Mayo Clinic in 2014.Nick’s 2014 vocal chord biopsy scar.Nick recovering from his mediastinoscopy.
The importance of a support system
It’s crucial. I even tried to push away Shelby, my girlfriend at the time, because we were so young. I was 23 when I first got sick. She was only 22. You fast forward a year of sitting in doctor’s offices and having so many heartbreaks and ups and downs.
I just thought, “You got to go. You should leave. You don’t deserve this. We don’t deserve this. We’re kids. I don’t enjoy sitting in these doctor’s offices or appointments or waiting rooms, and I know that you don’t. I know that you can’t.” That was never even an option for her. She never even thought twice about it.
When she told my aunt, she was like, “That’s my man,” and she stuck beside me. My aunt even asked her at one point, “Why are you still with him as he’s going through all this?” And she was like, “Because he’s my man.” She really stuck beside me throughout all of it.
The IgG4-RD Diagnosis
Receiving the diagnosis
The local hospital said it might be lymphoma, and Nick went to the Mayo Clinic. There, he underwent a bone marrow biopsy and full body plasma transfusions.
I got to the Mayo Clinic, and I’m very fortunate that I got in. Throughout my journey, I understand that a lot of people will try to get in with whatever illness that they may have, and not everybody is accepted.
I feel very fortunate to have been accepted into the clinic, especially when I was. We were pretty much at a dead end and didn’t have any answers. Nobody wanted to treat me for a partial diagnosis of an unnamed type of lymphoma.
Blood work for testing.Nick at his 1st test at Mayo Clinic in 2014.Tube inserted through Nick’s ribs into his lung to drain fluids after his mediastinoscopy.
When I got there and had all of the tests and all of the procedures done that you just mentioned, it took about 2 weeks. Then I finally got a diagnosis of IgG4-RD. Then they called it a pseudolymphoma.
They started diagnosing this disease at around 1998, I believe my oncologist told me. So very, very rare and new. I believe he only had one other patient other than me at the time that he had ever seen this in. I was the youngest patient he had ever had, especially with it in their heart, and then also manifesting in the lymphatic system as well. It really threw them for a loop.
Being treated as lymphoma
It wasn’t technically a lymphoma, but they treated it as a lymphoma. They put me on a Rituxan (rituximab) procedure and then also high doses of steroids to treat it in the same way that they would a low-grade lymphoma. The lymph nodes in my neck were massive and almost like golf balls on both sides.
When I returned to Cincinnati, Ohio, I began going to chemotherapy (at the age of 24 in August 2014) every week for a month to get this medicine.
Checkup at Mayo Clinic.Plasma transfusion before heart surgery.Nick after losing 49 pounds in the summer of 2014.
How did it feel receiving the diagnosis after 13 months?
It was extremely relieving. When I came out of my heart surgery, I was surrounded by doctors of different nationalities. I want to say there were 8 to 10 people in the room. Everyone kept apologizing and saying, “I’m sorry.”
They let me know right away, “You were the interesting case. You may never want to be the interesting case, but we’re here for you. We’re all going to be looking at your case moving forward.”
Fast forward a couple of weeks. To even have a diagnosis was a relief. It didn’t feel great to tell me that it was almost like the chances of hitting the lottery or that “you should go buy some scratch offs.”
At the end of the day, I was just fortunate. I was grateful to have an answer so that I could at least begin taking some action. Every doctor’s appointment that I left prior to that, I left with question marks of the unknown. Honestly, with the way that I was headed and the way that my body was deteriorating, I had really come to grips with the thought that I wasn’t going to make it much longer.
Shelby in labor with twins June 8, 2017.Shelby and Nick revealing they’re expecting twins to their family.Avery and Braylon, June 8, 2017.
What was it like trying to get a diagnosis for 13 months?
Being asked by so many others that care about you, and then for you to have to articulate, “I don’t know.” Then people that care about you want to know, “Why don’t you know? What don’t they know?” It was extremely frustrating, but mainly the feelings of hopelessness and despair started to set in.
At first, you’ve still got some energy, and I’d say you’re still pretty hopeful. You continue to have doors shut, and people tell you, “Hey, we don’t know.” You’re talking about your life. Then you’re also on the other side, physically deteriorating away. Every time you go to the doctor, you weigh less or you’ve got something else coming up.
Maybe subconsciously, that’s why I had asked Shelby to maybe leave as well. I didn’t feel great about what the future held if I were to stay on the same trajectory that I was when I was going through all of these doctor’s visits for 13 months.
Nick with a Holter monitor at Mayo Clinic on March 6, 2017.Nick at Mayo in 2014 after a day of tests.Nick celebrating getting to go home at Mayo Clinic.
Quite sad and very scary, to be honest. Scary because as a young man — I think most young people in general — I felt invincible, almost indestructible. I had never really thought about my own mortality. I had never really thought I’d have to face that at such a young age. No one really prepares you for that, and so I dealt with it in the best way that I possibly could.
There were definitely some unhealthy ways of numbing — trying to compartmentalize, utilizing some of the medication that I was given, or drinking excessively to try to push those feelings down so that I wouldn’t have to deal with them. It was just extremely scary. I wasn’t sure how to talk about it, and I wasn’t sure who to talk to. [There was] a lot of hopelessness.
Spirometer work for lung recovery.Communication between oncologists and owning his health journey.
Did you feel like people didn’t believe you?
Yeah, absolutely. There was one specific doctor that I went to. It was an infectious disease doctor. I actually will never forget this. I was actually thinking about it this morning, wondering if this would come up.
I drove a work vehicle way out of my territory, where I was supposed to be for the day, to downtown University of Cincinnati’s campus. My mom and my dad met me there actually, because at this point, I had lost a lot of weight. I had a lot of different symptoms and had been to many different doctor’s appointments that had no answers, so we had been referred to an infectious disease doctor.
At this infectious disease doctor, I want to say he took almost 30 vials of blood to test for all types of different [things]. It was the most that I’ve ever had taken just for testing. But at this point, we were all just like, “Anything that you can tell us, please let us know.”
We were very hopeful going into it that maybe this infectious disease doctor would be able to tell us what was going on with me and why I was having all of these symptoms: the night sweats, the weight loss, the fatigue. [I] gave him the blood and gave him the symptoms. I never heard anything back.
Journaling on the deck post treatment.Cancer support community supplies.Nick continually working on growth.
Advocating for yourself
The advocating for myself came into play. I called in twice. After calling in twice — and I’m saying over the course of a couple of weeks, calling in multiple different times — I was finally able to get a return. His partner’s physician’s assistant reached back out to me and told me that the doctor had thought that I had breathed in some sort of bacterial compound from the ground.
They were doing a new driveway and putting in some new parking in the neighborhood that I lived in at the time. We told him there was some excavation going on. His response to all of this stuff that they had taken from me was, “Oh, well, he’s breathed in more than likely some sort of spores or bacterial infection that he’s gotten from the excavation that’s happening around the house. If you continue to keep him on Benadryl and some over-the-counter medicine and some antibiotics, he should be good to go.”
Nick hospitalized during his cancer journey.
Frustration and hopelessness
That was really frustrating to me because I had never had anybody take so much from me. There was a lot of time that went in between there. Then also no call, no follow-up.
A lot of that hopefulness, and this is where that hopelessness kind of started to come in. This was my last-ditch effort after seeing oncologists and all types of different doctors before and not having anything.
This to me almost said, “Oh, this doctor doesn’t actually think I’m going through some of the things that I’m going through.” It almost felt like it was just, “Pick something out of a hat and tell them this is what it is.”
4-year sober chip.Celebrating 1 year of sobriety on May 30, 2019.
I was pretty frustrated. I remember asking my oncologist at the Mayo Clinic months later, “What if I would have listened to that person? What if I would have listened and stopped there and gave up, because that’s what I chose to listen to?” It just didn’t sit well with me.
As we’ve mentioned many times before, you have to continue to press on. If you don’t feel a certain way or if you know that there’s something else going on with you, you’ve got to continue to search for answers.
That’s where your support system can come into play majorly. You may be out of energy and you may be exhausted, and that’s where you’ve got to be able to lean on your support system to help you to make sense of everything that’s going on in your world right then.
Nick holding a gift from the nurses at chemo.Nick at the Mayo Clinic for a checkup in 2017.Nick getting his finger pricked for blood work at a checkup.
What did the Mayo Clinic oncologist say to you when you said, “What if I had listened?”
That was my biggest question. What would I have done if I would have listened to this doctor? Then also, what do people do that don’t have health insurance? It cost me a lot to get there, and I had great insurance with the company that I had worked for.
The answer, I believe, is that you wouldn’t be here. You would have more than likely died. People that inherited this autoimmune disease in the past that have gotten this more likely than not have not had the means of going through all of the different doctors, oncology specialists, hematology specialists, PET scans and the CT scans to actually identify what it is that they’re dealing with.
[I] felt very fortunate, but also very sad because I can’t be the only one. I know that the odds look like that on paper here today, but I know there’s got to be other cases out there. We just don’t know.
Prep for chemo treatment.Nick’s 1st chemo in 2014.Nick getting maintenance chemo.
IgG4-RD Treatment
How long did you go through treatment?
Rituximab and steroids every 2 months, then eventually every 9 months.
From August of 2014, all the way until my last treatment [around] December 2019.
I got a port put in originally in August of 2014 from my autoimmune disease and for going to chemotherapy. Then we got to a point where I was only going twice a year, so my oncologist at the Mayo Clinic was more than on board with me getting my port removed.
To me, that was more of a mental victory because it didn’t cause me any physical pain or issues. But it was that reminder of having this thing that I had to go get flushed regularly. I wasn’t not even coming in here that often anymore. I was like, “Maybe we could get it out, and I could get a little mental victory for once.”
They were like, “Absolutely.” [I] got the port taken out. I went to chemotherapy and worked throughout my whole career, pretty much from August 2014, all the way up until December 2019.
1st port removal in 2018.Port removal complication.Nick after successful port removal.
Your treatment stopped during the COVID pandemic. How did you feel during that time?
There was a lot of confusion around, “How am I going to get to the clinic? Is it safe to get to the [Mayo] Clinic?” Flights weren’t very prevalent at the time. I was supposed to get chemotherapy at a 9-month mark and wasn’t able to work that out between insurance and logistics and everything.
I actually ended up going about a year without chemotherapy. No tests, no scans during that time. During that time, I felt pretty good. I felt relatively healthy. During that time, I took more ownership than I ever had in the past.
Engagement, December 11, 2015.Nick and Shelby’s wedding in St. Croix on February 22, 2016.Engagement, December 11, 2015.
In the past, I really just was kind of just following all of my doctor’s orders and doing the bare minimum, if I’m being honest, and doing what they told me to do. If they told me to be at chemo on this time, this date, that’s what I did. I showed up that time, that date.
Then outside of that, I didn’t do anything in my own power to put more distance between myself and my autoimmune disease, or to put more distance between myself and heart disease. I had what I call a wake-up call. [I believe] the universe was kind of preparing me for the journey that I had ahead.
Nick doing daily meditation and breath work.Nick reading in August 2022.
Symptoms returning
In August of 2020, I started working out more. I started to really prioritize my holistic health, focusing on physically improving, mentally improving, emotionally improving and spiritually improving. During this time, I was feeling good.
I lost some excess weight that I had put on from years of taking steroids and eating whatever I wanted. That probably stemmed from all of those years of being really skinny and losing a lot. I just started eating whatever I wanted, and then I really ballooned for a while. This was the first time where I was like, “I’m taking control, and I feel good.”
Nick at his first Spartan 5K in 2018.Nick during December 2020, while he was overlooking night sweats and other symptoms.Nick doing cold water immersion in Colorado in 2022.
It was probably around October 2020, and I started having night sweats again. Maybe I wanted to look past it or wanted to overlook it and didn’t want to really say, “Oh, man, maybe I got something going on again,” because I felt so good in all of the other areas. I looked good in the mirror for the first time in so long.
I was like, “Man, it can’t be that big of a deal. This might just be something else.” I kind of just swept it under the rug and then went and got a PET scan in December of 2020. That’s when there was another thing that took a left.
Marginal Zone Lymphoma Diagnosis
What was it like when you got your PET scan?
I went into my PET scan. Actually, it wasn’t in the hospital. They had a trailer that they were using, a mobile PET scan office that was right outside the hospital. The technician had a partner with her. She was super sweet, and she was asking me some questions. She was walking me outside into the trailer to get all set up.
You have to make sure you sit still and quiet for a while. But prior to that, they wanted to know what my story was. Why was I here? “You’re too young to be here.” If I had a dollar for every time someone told me I was too young to be here or to be going through this, I’d be rich.
I explained. I had told them about my history as a young man, and they were like, “Oh, wow, you look so good. You’re a fighter. Everything is going to be good. We just know it.”
I was like, “Absolutely.” I hadn’t been in better shape. I was ecstatic. I was like, “Let’s do this scan.”
Healing from port #2.Pulse and oxygen monitor.Post op after axillary lymph node was removed.
After the scan
When I left the scan, that energy wasn’t in the room. I wasn’t sure if it was because it was raining, but it was raining when I went in. I just kind of had this feeling. I wondered what they saw. Because I’d been through so many of these things and getting cardiac MRIs or echocardiograms, I wanted to ask some questions. They were like, “I can’t really tell you.”
I don’t try to pry too much out of my technicians anymore. I could just tell that things were different. They wished me the best, but the lady’s face changed completely. It was more like my caring mother or caring motherly friend at this point.
Nick running.Nick having fun exploring.Nick working out.
But once again, [I was] in denial, just like the same with the night sweats. I was like, “Huh, I’m feeling good. I feel like I’m winning, so I’m going to sweep it under the rug again and keep it moving.” Plus, I had really done a lot to ground myself in remaining objective [with] neutral thinking.
In the past, I had done so much living in the future and worrying about, “What am I going to do if this happens, or what am I going to do if they say this or if my oncologist says I have this? Well, what am I going to think about that?”
That caused so much anxiety. At that point in my life, I wasn’t doing that anymore. I was like, “Hey, the facts are: I feel good, I just took a PET scan, and that’s all I know.” That’s where I left it.
Receiving the PET scan results
Because everything is so smart nowadays on the phone, nobody called. I got the results in the palm of my hand on my summary report. [It] said findings: abnormal, abnormal. abnormal, abnormal. The denial at this point was like, “Okay. Something’s definitely off, but I’m not sure what it is.”
I didn’t want to go Google all of these big words on here, give myself my death certificate, and punch my stamp here today before I even heard from a professional. I tried to ground myself. I tried to pick up the phone and call to see if I could get an appointment to review the results with my local oncologist.
Then I also called my oncologist at the Mayo Clinic, because the oncologist at the Mayo Clinic was ultimately the one who had asked me during my last treatment way back at the Mayo to get a PET scan the next time I got to the doctor. [I] sent the information over and was hoping for a professional opinion, but I knew that it wasn’t good with the word “abnormal” capitalized multiple times throughout this report.
What happened when your oncologist at the Mayo Clinic called?
I was at work. I was training a couple of new hires, and I had a telehealth appointment with my Mayo Clinic oncologist.
He said, “Nick, it looks like you’ve got some type of cancer, and it’s spreading throughout pretty much a good portion of your body. I need you to get up here immediately so that we can do a biopsy and figure out what’s going on. We need to figure out if this is your IgG4 resurging, or we need to figure out what is happening here. How soon can you get to the Mayo Clinic in Rochester, Minnesota?”
At that moment, that’s when I knew things were real. Leading up to that call, I knew that it was only a matter of time before we had to get back into the fight mode. I had already kind of readied myself a little bit.
I had even told the people at work, “Hey, I have a feeling I’m not going to be here in a few weeks. I’m going to have some tests. I’m going to have some things that are going to come up.”
I’ve been through this before, and I wanted to prep. I was in a leadership position at this time with direct reports, and I wanted to make sure everyone else was taken care of. I didn’t want them to see me sweating. This time now, I had 3 kids and a lot more to lose.
Leaning on support
I was rocked, but also I knew I had a great support system. My mom started going to the Mayo Clinic with me for my original visit and was really my road partner for the majority of my trips, up until I was at that point where I was going only once or twice a year and was doing pretty well.
I called her and said, “It looks like we have to get out the Mayo Clinic clothes again. Get the hoodie and stuff, some of the souvenirs we bought thinking we weren’t going back. I think we need to go back.”
What was the impact of the word “cancer”?
I was just in disbelief. I had heard “lymphoma” so many times before, but [with] the pseudolymphoma, I almost felt like I didn’t really fit in a box anywhere. I didn’t fit in the cancer survivor group exactly, because I didn’t have a cancer diagnosis. There was nobody else in my little interesting case group over here. I was a little bit scared once again.
Also, I just remained grounded in the fact that I wasn’t sure exactly what I was dealing with just yet. I wanted to wait and to really understand what kind of cancer and what the protocol looks like. I knew that my oncologist was going to be extremely thorough, as he always is, to give me that information.
I was scared, and I just wasn’t sure what that fight was going to look like just yet. Honestly, I kind of assumed that it would be similar to whatever I had gone through in the past. [I was] just thinking, “If I’ve gone through it once before, I could probably get through it again.”
Nick and Shelby’s children: Avery, Taelor, and Braylon.Nick with his kids in September 2018.Christmas 2020
Did your autoimmune disease turn into lymphoma?
Yes. As I mentioned before, my oncologist started diagnosing the IgG4 autoimmune disease in 1998 and had only had 2 patients really, including me. He had told me about several conventions that he had gone to. I think he found one other person that was being treated in Japan for something similar.
The way he explained it to me was, “You already have a remarkable case, but you are the first person that I have ever treated that had IgG4 where your autoimmune disease mutated into a full-blown lymphoma.” Those were his words.
My autoimmune disease had mutated into a full-blown cancer, into a lymphoma. They staged me 3 through 4, meaning it was on both sides, throughout my entire diaphragm, had made its way into part of my liver, and then was starting to make its way into my bone marrow.
Nick walking with his children.Nick with moon face, a common side effect of steroids.Nick and the boys at the museum.
Processing the Diagnosis
What did hearing that feel like?
My doctor is very open, very honest and straightforward. He explained to me once again the odds of the autoimmune disease, but then he also explained the rarity of the type of cancer that I had, which ended up [being] nodal marginal zone. He said that accounted for almost only 2% of the types of non-Hodgkin’s lymphoma that they see. Nodal marginal zone is pretty rare.
He did say that if caught early and especially if somebody is healthy — relatively, with everything else going on — that he did feel optimistic that we could treat it and get it to go away.
But he was very honest and upfront, letting me know that for being as young as I was (I was 31 at that time) and having had the history that I had had over the course of the last 8 years since I was 23, with lymphatic diseases and issues, that there’s a good chance that it may come back again at some point. This could be something that I deal with for a while.
Just very open, very honest, straightforward. Oncologists and doctors don’t win any prizes for making you get the warm and fuzzies and feel good about everything, but it was what I needed to know. [It was] what I needed to hear. Once again, you would think that I just took him at his word and everything, but I even saw another oncologist back home. [It was] just to make sure that the treatment plan and everything else that my oncologist at the Mayo Clinic had rolled out was what she thought as well.
What Nick would eat before chemotherapy.Nick was hospitalized with COVID and needed an IV.Prep for port access for chemo.
Getting a second opinion
Dr. Cynthia Chu, my neighbor, is a 3-time survivor of cancer, and she’s had non-Hodgkin’s lymphoma before. This doctor here locally treated her for it, and they just absolutely raved about her. Honestly, if they hadn’t spoken so highly of her, I probably would have never gone to see her.
I went and saw her as well. She was extremely direct with me and let me know the staging right off the bat, whereas I had to ask my other oncologist what stage. I think that probably goes into us working together for so long, and maybe they didn’t want to scare me. I’m not sure. She was very direct with me and told me exactly what I was dealing with.
She also let me know that the standard of care that I was getting was the top of the line for the time my cancer was diagnosed and how they were treating lymphomas. She said, “It is the standard of care; it is the best care. I would treat you if you needed me to, but where you’re getting your treatment is the best place that you could possibly go.”
That reassured me. “Okay. The facts are the facts, and now we’ve got to get to work.”
What emotionally, psychologically and spiritually propelled you forward?
Setting an example for your children
What propelled me forward was knowing that I have 3 boys. I’m sure that the statistics have changed, but I believe the last time I heard [it was] that 1 in 3 people is going to live with or fight cancer at some point in their life.
It’s very easy for me to look at my 3 boys, just do that math pretty quickly, and understand that the facts say that one of them may inherit cancer or go through this at some point in their life.
They’re looking at my ancestry and my medical history. Cancer runs in my family. For me, that was not an opportunity to stop, but more of an opportunity to lean in. I’m big on leadership, leading from the front, leading by example, and hopefully providing an example for my boys to see what we do when life happens.
When things get hard, what do we do? When we face challenges, what do we do? They’re going to ultimately learn that through the examples that they see and the people that they surround themselves with.
That was something that I took to heart very seriously. I had an opportunity to not only better myself, but to provide an amazing example of what it looks like to fight, what it looks like to prioritize yourself, and to not be defined by your circumstances. [Instead] rise above a tough situation and then make the most out of the hand that you’re dealt. That was a big motivating factor for me.
Avery cheering up Nick with a picture.Celebrating Nick’s final chemotherapy with Braylon and Avery.Icing swollen lymph nodes prior to starting chemotherapy in March 2021.
Not my time yet
Then also, I just didn’t believe that it was my time. I felt that I had so much positive momentum going. Like I said, I had this wake-up call before I had gotten sick. I just asked myself, “What am I doing to raise my own personal stock price in this world? What am I doing? How much have I invested in my own self?” And I hadn’t invested much.
That was when I went on my spiritual, emotional, mental and physical journey. Like I said, when I got the diagnosis, my physical [condition] was almost removed immediately through the hospitalizations, the weakness and the starting of the chemotherapy. I knew that there was something bigger at play here, because these were things that I wasn’t even thinking about necessarily a year ago.
Now, as a result of having this foundation of a holistic wellness picture, I was able to say, “Physically, I may not be able to do as much as I was able to do 2 months ago. I may not be able to run as much or do as many pushups or any of those things. But I do have a great foundation for the emotional intelligence things that I can work on. I can still work on my emotional intelligence. I can still work on that. I can still read. I can still consume as much knowledge as I possibly can, then apply that knowledge to make my life as meaningful and fulfilling as I possibly can. Then spiritually, I’ve got a great opportunity here.”
Using it as an opportunity
That’s how I looked at it. It was to really see, “Are you really about the things that you say that you’re about?” [It was a chance] for me to lean in and to really do the work and roll up my sleeves, just like I had gotten down and done physically. I was like, “Okay, well, now this is an opportunity for me to really work on these other tools and make those just as strong as my physica [tools].”
That was the motivating factor for me. I had this feeling that my time wasn’t up, but almost more like I was kind of being tested on how much I can endure. Also, what am I going to do when life hits?
Selfie in the bathroom during chemo.Second-to-last chemotherapy treatment in July 2021.Selfie during chemo.
Treatment and Side Effects
What was your treatment regimen?
Regimen of bendamustine, Rituxan and high-dose steroids
That was every 28 days. I went 2 days back to back. Let’s say I went on Wednesday, and then I went on Thursday. I received the intravenous drugs that you just mentioned there. In between, especially at the beginning, there were days where I needed to get additional fluids and come back into the hospital.
Neutropenia
Often with that treatment, because the bendamustine caused neutropenia and the white blood cell drop, one of the things that I battled often was neutropenia. I had febrile neutropenia a few times, so I spiked a fever. Because I had no white blood cells, I got several different, pretty nasty infections along the way that ended me up in the hospital.
[They were] things that healthy people typically just don’t deal with [because] our bodies are naturally strong enough to fight them off. I wasn’t able to. That landed me in the hospital, and so that was extremely difficult to go through and to juggle all of those things.
The chemotherapy really did a number on me. At the beginning, I was so sick. One of my lymph nodes on the right side was so large that I had to physically move it down so that I could swallow or just swallow water, swallow food and just eat anything.
Shelby comforting Nick.Nick and the kids at the Big Climb LLS fundraiser.Nick with son Avery.
GI issues
I was really looking forward to starting chemotherapy because I was like, “I know that once I get the steroids (the prednisone), those things will shrink, and I’ll get better.” But man, I had so many stomach issues. My stomach was in so much pain after starting the chemotherapy.
Unfortunately, right before I started chemotherapy, I got E coli. My stomach was in really bad shape going into chemo as it was, and then to put all those tough, tough drugs on your stomach on top of it was really, really tough. For a month, I suffered pretty badly with a lot of stomach issues, just as a side effect.
I wasn’t able to eat very much. I had no appetite. I often had a very watery mouth, just like that precursor to getting sick. Dry heaving every once in a while, especially when dealing with the neutropenia. I would vomit. The diarrhea, the pretty unpleasant things that come with the nature of going through chemotherapy.
Nick in the ice recovery barrel.Nick at the Spartan 10K in Atlanta following a bone marrow biopsy.Nick working out after chemo.
What helped with your side effects?
The thing that helped the most with the GI that they prescribed me was omeprazole, a 20 milligram tablet once a day. Ironically, they had prescribed me this during one of my hospital stays. There were so many medications that I was given.
I had lost or forgotten that was one I could take that would help me. I was already taking so much. No one told me or reminded me. I found it one day and remembered, “Oh my gosh, they told me that if I had stomach issues, that I could take this as well.”
I started taking that regularly every morning, and a lot of those underlying stomach issues and major discomforts that I was having went away. That was almost like a party in itself. I had found this medication, and I was like, “Yes!”
I couldn’t believe that I had forgotten it, but then I also offered myself a little bit of grace. I have this drawer full of medication, and sometimes you forget which ones that you’re supposed to be taking or which ones are elective.
Nick in the chemotherapy room.Nick’s chemo side effect medications.Nick undergoing chemotherapy.
Maintenance chemo
The neutropenia and the white blood cell deficiency was a big portion of my story. [For the] original chemotherapy schedule, they scheduled me for 9 months.I was going through that every 28 days, 2 days on.
I finished that at the end of August. I finished that, and then September, [I] took a month off and got scanned. Everyone at this point was like, “Hey, let’s high five. You have no more cancer.” I didn’t have any cancer on the scans, which was amazing.
But something — I think probably all the years that I had gone through this before — told me, “Hey, it’s not over really just yet. Just because your scan doesn’t show cancer doesn’t mean you’re done going to the doctor.” I was still going to have to get my port flushed. I was still going to get blood work, and I was still going to have the scans and the tests that were going to come for years after.
Nick with Harry, his father.Celebrating the twins’ 5th birthday in June 2022.Nick with childhood friend Eric.
In October of 2021, [it was] 2 days after starting work. At that point, I didn’t have any chemo on the calendar, and work was like, “Do you have any chemo?”
I was like, “No, I’m done.I’m doing well and feel like I’m ready to come back.” Then 2 days into work, I went back for a checkup. The local oncologist was like, “Hey, by the way, standard [care] says that we put you on a minimum of 2 years of maintenance, every 8 weeks of Rituxan and steroids.”
[That’s] what I’ve been going through since August of 2014, and so I went and got maintenance chemotherapy through January.
Stopping maintenance therapy
Every time that I went to the doctor to get my maintenance and to get my blood work, I was still battling white blood cell deficiency and neutropenia.
Every time I went, I was continuing to get Zarxio. They’re shots to boost my immune system, basically, to make it safe for me to be out in the world during the pandemic. Also, I wanted to travel, and it seemed like every time I was getting ready to leave town, to go do something, or to go participate in a race, I would get some blood results that would say that I was neutropenic.
Zarxio injection.
As a result of that, I had a third bone marrow biopsy done at the beginning of March, because my oncologist was worried — “Maybe you have leukemia or another type of lymphoma that’s coming up, because it doesn’t make sense that you’re still deficient here.”
The third bone marrow biopsy was inconclusive. No cancer, none of that, which was great news. They said, “We’re going to hold off on the maintenance at this point, because it’s clear that your body’s gone through it. We’re only keeping you sick at this point.” After a couple of times of getting COVID and some other things throughout this winter, they said, “Let’s stop.”
Reflections
How are you feeling now?
As of now, I’ve been off of maintenance since February, and there are still no signs of cancer. Honestly, for the first time — in my young adult life at all — since I was 22 years old, I feel healthy. I feel good; I feel fit. I have energy. I’m not having night sweats. I’m really celebrating life every day, every chance that I get.
I celebrate life when I’m not feeling well, but I’m really reminding myself of those days where you don’t feel good and how you really sulk in those days. They’re really long. I try to elongate these days of feeling good as well, because it’s been a long time since I’ve felt like this.
Nick at the Mount Elbert’s summit at 14,433 feet.Nick in an ice barrel recovery session.Nick finishing the Flying Pig Half Marathon in May 2022.
What helps you when you’re not feeling great?
Gratitude list
One of the first things that I do is I try to sit down and do a gratitude list. I ask myself — and I ask it typically out loud — who or what am I most grateful for in this moment right now? Who or what am I most grateful for and most appreciative of in my life today?
That causes me to take a deep breath and to stop, rather than react to whatever emotions or feelings that I’m feeling right now, which are fleeting. They continue to change throughout the day, but often we react to those things. Then we become subject to whatever repercussions that we’ve caused during that.
It gives me an opportunity to slow down and to really shift back to neutral. Let me state the facts. The facts are I am extremely grateful to be above ground today. I’m extremely grateful to be able to brush my teeth, to put on my own clothes, to put on my shoes and to wash my body.
Things that if you’ve gone through this journey — to be able to even use the bathroom on your own and have some privacy, or to wipe your butt without having someone help you is major. Until you’ve gone through that, you take those things for granted often. I start back at the base level and start thinking about those things.
I’m grateful that my kids are healthy and that I have both of my parents. When I start going through that, I start realizing, “Wow, yeah, life could be better for my current situation, but it also could be a lot worse. I’m very fortunate to have the things that I do have today.” Whenever I’m really feeling it or in the thick of it, I go to a gratitude list.
Lean on support
Then point two is I pick up the phone and call somebody, or I lean on somebody that I can trust. I find that when I don’t say how I’m feeling, I typically compartmentalize or numb or bury those things. All that does to me is it keeps me sick over time. Then I have more emotional wounds to deal with later.
I’m trying not to add anything on, so I’m trying to use some of the tools and resources that I’ve learned along the way, [as well as] those real-time tools that I keep in that invisible bag of tricks at my feet. I try to utilize those, but gratitude is something that helps me get out of myself almost immediately.
How have you turned your pain into purpose?
I hear Eric Thomas speak about this a lot. He’s a profound motivational speaker that I look up to. [He] talks about recycling your pain. I didn’t realize that’s what I was doing as I was going through this, but I have used all of this pain. I have recycled this pain, and I’ve used it to find my higher purpose.
I follow that purpose with an extreme amount of passion. Like I told you at the beginning of this, I’m fanatical about personal growth. I’m fanatical about maximizing human potential. Then also, as you’ve heard me talk about some of the real-time tools that I use and remaining objective and neutral, I’m really big on mindset.
Mundy Mindset LLC
As a result of going through all of these different things that I’ve experienced over the last 9 years, I started a mindset and wellness coaching company called Mundy Mindset LLC. It’s a mindset and wellness coaching company. I teach people to utilize their resources that they have right in front of them and that they have within them, and to utilize their mind to propel them to ultimately create their reality.
Our minds are extremely strong, and as you’ve probably seen, your body will often follow what your mind is telling it. If your mind is telling you that you’re sick, if you have a defeatist mentality or attitude, if you’re focused solely on the negative, or if you have pre-diagnosed yourself with a death sentence, the body typically can follow. That can be extremely scary. That could cause worse issues that could cause you to die prior to your cancer diagnosis itself, just by sheer quitting or the quitting of your spirit.
I like to help people and teach them to take advantage of their time. Life is not fair. We have a limited amount of time. I teach people to live to their fullest, to utilize habit setting to achieve the goals that they want to accomplish in this life, and to really make sure that they’re leaving a legacy that they’re proud of.
They’re doing it in a way that inspires others around them to do the same. I’m fanatical about that. It’s my passion. I just want, like I said, to create a place where I leave many people positively impacted and leave people better than when I found them.
Welcome to part 1 of Andrew and Esther’s story of chronic lymphocytic leukemia (CLL), myelofibrosis, and living life as a patient and caregiver.
In this segment, Andrew and Esther Schorr discuss their initial reactions to Andrew’s CLL diagnosis, figuring out next steps, talking to your children about cancer and what topics they will cover in this series.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Esther shares her caregiver story, reflecting on lessons learned through her husband’s CLL diagnosis in 1996.
VIDEO: How we Processed Cancer as Husband and Wife
How were you both at the beginning of this journey?
Esther: Andrew, at the point when you got a diagnosis of CLL, both of our reactions were, “What? What the heck? What is this?” For me, it felt very much out of our control. It was like, “Oh my God.” What was your reaction?
Andrew: I thought my life was over. I didn’t say this to you, but I thought, “I’m leaving a wife and 2 little kids. Hopefully I’ve lived pretty well.” But that’s it, because I didn’t have information.
Esther: I think that’s it. That’s what I think I want us to talk about. It seemed to me that what happened was you had those feelings. If I think back, I probably had some of the same. I was like, “Oh, my God, I’m losing my partner in life, and my kids won’t have a father.”
But there was a real transition when you and I talked about it, and we started to get information. My recollection was that we knew somebody who knew how to research these things.
Andrew: Right. When we first went to the oncologist — we’d never been to an oncologist before — and he gave us this diagnosis of chronic lymphocytic leukemia, we were both in tears. We didn’t know anybody, didn’t know what it was, etc.
Our friend David Nudelman helped us on our home computer to connect with others, and ultimately we connected on the phone. If you recall, Esther, I started going to lunch with other CLL patients in Seattle, where we lived. We started connecting, and then it was the search with their help for the smartest doctors.
Esther: Right. You did that in seeking out peers, and in parallel with that, my way of sort of getting my feet under me was to try to get a handle on my emotionalism and to get counseled and use some medication and whatever to be able to be there for you and for the kids.
Andrew: Right. You remember that somebody referred us to a counselor and I think his wife had leukemia. I seem to recall that. He said, “Hey, Esther, you’re kind of an emotional person. Maybe you try St John’s wort as a natural substance to see if it takes the edge off.” You had been opposed to any kind of medicine. You thought it would be “Invasion of the Body Snatchers.” But it worked.
Esther: Yeah, it did. It did work. I think that that’s a real example of how you and I are very different personalities. We’re dealing with gaining some control in what seemed like an uncontrollable situation. At least I remember that once we got to the right doctor, we understood the diagnosis. I do remember that it was a little hard to swallow.
It was Dr. Keating, if I remember. We ultimately got to a subspecialist, special specialist, when he said, “You don’t need treatment, maybe for years.” There was this hurdle to get over of, “What do you mean you’re not going to do anything for years?” Once we got past that, it felt a little bit more controllable, or it felt more calming, I guess. At least it wasn’t urgent.
Andrew: I went from feeling I’d be dead tomorrow to, “We don’t have to do anything right away.” But you’re right; it was worrisome. I think just in the family, [it was] what does this mean? When? How do we go on? What should we say to you? What should we not say to you? When do you go to the doctor again? What did the doctor say?
We had that with our children, certainly Ari, who I think was 6 or 7. He started to ask questions. You remember this, Esther? When Ari asked me, we explained that Daddy had a sickness in his blood. Ari was like 7, and he said, “Will you be there for my bar mitzvah?” [That is] age 13 in our Jewish religion. I said yes, but I didn’t know.
Esther: That’s a whole other topic of, “At what point do you talk to your children, and what can they comprehend?” That’s probably a subject for another time. I do remember that, and I also know that in the situations where people have chronic conditions, there are these ups and downs of waiting, either waiting for treatment or waiting for the next blood test.
I know that when you would go for those exams, there was a little bit of that anxiety again. It’s like, is another shoe going to drop? Is this going to be the time that you’re going to need treatment? And is that a good thing or a bad thing?
I was like, “Okay, we’re waiting. We’re waiting. Now do something.” When they did something finally, I actually felt better than the period of time where they were doing nothing. I don’t know how you felt about it.
Andrew: I felt the opposite. I said, “Oh, my God.” I didn’t want to face it. If you recall, the treatment started in Houston at the MD Anderson Cancer Center, this big monolithic monument to cancer research and treatment.
We were not from Houston and didn’t know anybody from Houston, so we’re definitely strangers there. I did not want to be there. I wanted to just go on, “Yeah, you got this diagnosis, but it’s not really going anywhere. Just let it ride.” I wanted to just let it ride. I was not ready for treatment.
Esther: So there you have it: 2 people, different reactions.
What topics will you be covering in this series?
Andrew: I think there are some funny things that have happened along the way. First of all, meeting some great people. Fortunately, with my illnesses (which have been long term), I’ve gotten to know my providers pretty well — the nurses, the doctors — as people. I think that’s been pretty rich.
There’ve been some episodes that have been screwy, fainting or just memorable moments, that you’ve had to work with your team. Also, just funny conversations you’ve even had with people trying to figure out, well, what’s going on with you?
Esther: I think a couple of topics off the top of my head is that it was very clear when we met with the special specialist that he was the right guy. There were a number of reasons for that. There was our local oncologist, and there was this subspecialist.
I think talking about what it takes to have a good relationship. When do you know you’ve got the right person taking care of you? That’s one. Another, I think, is for people like yourself and like us, how do you broach treatment and longevity and those things with children? With family?
I think relapse. Once somebody is through treatment, how do patient and care partner deal with the specter of relapse? What does that mean? How are the reactions different?
Andrew: How do you plan?
Esther: How do you plan your life knowing that there’s this thing out there that could or could not impact what you think is the ideal future?
Andrew: How do you travel? What if you get sick when you’re traveling? What are your resources? What’s the solution?
Barbara Kivowitz, Caregiver Expert & Author “A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”...
Esther took a vow to her husband, Andrew, to support him in sickness and in health. Then 10 years into their relationship, Esther was suddenly faced with fulfilling that vow as a young wife and mother two kids. She stuck by Andrew as a care partner when he was suddenly diagnosed with chronic lymphocytic leukemia (CLL).
Esther reflects on their relationship, the importance of taking care of oneself in order to take care of others, and processing all the emotions that come with a cancer diagnosis.
Cancer survivor Andrew shares his CLL story, including clinical trials, connecting with other CLL patients, treatment side effects, and saying yes to life.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
“You need to take care of yourself as well as you take care of the person that you love so much who’s going through it.”
Esther Schorr
Introduction
How did you and Andrew meet?
I actually met Andrew outside of Los Angeles at what at the time was called sort of a singles weekend. I guess that was before all the online stuff. We’re Jewish, so it was sort of a Jewish celebration of the Sabbath.
I met Andrew. He had been very involved with this group for a long time and I was kind of a newbie. When I met him, I thought he would be a great match for one of my best friends at the time. I left that weekend thinking, “Nice guy. Probably not for me, but whatever.”
The long and the short of it is that we met again at a reunion of the people on that weekend. In the meantime, I had broken up with somebody and was dating other people.
He invited me to go out. We went out and 6 months later, we were married. That’s the story, and that was almost 38 years ago.
It went well. We went to Hawaii together on a trip. I was supposed to go with my mother to Hawaii and instead I went with Andrew. She was okay with it and he proposed to me on top of a volcano. It was very cool.
What were your roles or personalities in the relationship?
Andrew, from the get go, was very much more of an adventurer than I was. I liked to travel, but I hadn’t done as much as I would have liked to, because I just wasn’t doing it on my own.
I’d say it was more of not so much opposites attract, but more Andrew is much more even-tempered and has an even perspective on life than I was and still am. I’m more of an up-and-down emotional relater than he is. That’s carried through our relationship and through the journey we’ve been on with his diagnoses. I’ve just learned to stay more even on a lot of things, and I’m sure we can talk about that.
Sort of that fast-forward period in that early part of our marriage, I ended up leaving a corporate job and went into business with Andrew doing videos in the health field. In the middle of all that, we moved to Seattle from Los Angeles and had 2 kids and a dog. We ended up with a dog and a cat. That was the beginning of our married life, and life got hectic.
Health Issues Start
10 years into your relationship, Andrew starts experiencing symptoms
Actually, he was feeling fine, except he was having some nosebleeds out of nowhere. He’s very athletic. He and I were running half marathons, and he was pushing the kids and the little stroller, the jogger.
After a couple of nosebleeds, I said, “You know what? Why don’t you just go to the doctor, let them look up your nose and see what’s going on.” It turned out that the nosebleeds had nothing to do with his first cancer diagnosis.
He ended up having some blood work done.
What, if anything, was going through your head?
Early on, I thought, “We live in a place where the weather is dry.” He wasn’t having any other symptoms. He was exercising, sleeping well, hadn’t gained or lost weight. Up until pretty much the second call from the doctor…
There was a first call of, “How are you feeling?”
“I’m fine.”
The doctor said, “Really? It looks like you may be fighting some kind of an infection. Let’s redo it in 10 days.”
At that point, I wasn’t really concerned when he went back for the second blood test, and then the doctor called and said, “I think we need to do further testing.”
It was then that I was like, “Oh no, what’s going on?” I wasn’t really tipped off until then.
Do you remember the moment of the diagnosis?
I do, and I remember the visceral feeling of being in some kind of strange, very bad dream. It was like I really didn’t believe it. I was like, “What are you talking about?”
Then as I thought about it, I got very, very frightened. Somebody in the Seattle area, a well-known figure, had recently at that time died of chronic lymphocytic leukemia. It was a relatively young guy like Andrew.
I clearly remember Andrew and I just both going, “What?” and being completely gobsmacked. Then, of course, we thought about, “Oh my God, we have 2 young kids.” I think the oldest was maybe 8, and the little one was 4. We were trying to conceive a third child at that time, so it pretty much blew my top off emotionally.
Being a Caregiver
Do you have advice for other caregivers in this situation?
My reaction was one of high anxiety and I would say very close to being incapacitated emotionally. I went and got help. I went into counseling.
I felt that if I couldn’t be there for Andrew and couldn’t be there for the kids and I couldn’t keep it together, then I had to figure out how to get through this in some rational, functional way. What it led to is that I went into counseling.
Andrew and I went into counseling together. We were figuring out what was the treatment, who was the right doctor, etc. I went onto some anti-anxiety medication. That’s not for everybody, so that’s not really advice.
I knew that through talk therapy and through understanding my composition, I needed external help to stay even and rational about what our next steps needed to be. To this day, that has helped me get through some of the other things that have come up along the way.
I’d say the advice is if you’re not dealing, if you’re not on an even keel, it doesn’t mean you can’t feel it and that you’re not going to be upset. But you have to figure out a way to be able to work with your partner or your loved one to make some rational decisions together.
That’s totally it for you as a caregiver, whether you’re a care partner — you’re the person, the main person with the patient — or you’re just part of the support system. The patient is dealing with the patient’s shock, but there are going to be things that a patient has to take care of themselves.
Then there are going to be [things] like in our situation. There were children that didn’t understand what was going on. There was some measure of having to shield them from having them be upset. You have to be present. There are some people who are able to do that without outside assistance, and some just need that additional support for themselves.
Get enough sleep. Don’t stop eating. If you need medication or you need counseling, you need to get them. Do yoga, whatever works to keep you balanced. They’re going to need it.
Support for Caregivers
Value of professional counseling
It’s maybe not even professional counseling, but that’s one outside voice. For me, during some of the latter part, it was my mom. I clearly remember when Andrew first went through treatment, I didn’t want to share with Andrew openly my emotional feelings about that.
He knew that I was concerned, but I needed to have a good cry. I didn’t want to do that when he’s already dealing with his own anxiety or issues. In some cases, it would be somebody who’s in pain. Fortunately for him, it wasn’t.
To have an outlet of somebody else who can support you while you’re supporting your loved one is really important, and it’s not a sign of weakness. It’s that you’re a person, too.
What is the importance of getting support right away?
I think you have to put ego aside. It’s like saying, “I’m strong enough to get through this on my own.” Some people are, but you have to know. You have to look inside and say, “Okay, this is not going to be the even road that we thought it was going to be or that we hoped it would be.”
You have to keep your eye on the end goal. The end goal is for your loved one to get better and for you to be there as fully as you can be to support them. The only way you can do that is for you to be strong and centered as well. You have to know there’s nothing wrong with having human weakness or human emotion.
You just have to figure out how you as an individual have to regulate that and get through it, because it’s going to be a challenge for you in a similar way as it is to the patient, except it’s not happening to you. It’s the emotional part that you’re both going through.
Dealing with Emotions
Processing grief
There’s one other thing I would say. Looking back on it, it’s also dealing with a sense of grief. When somebody dies or when somebody gets very sick, even for the people who are not sick that are watching something like that go on, there’s a grieving process.
For a caregiver or a care partner, as I like to call it, there’s a sense that when somebody you love is diagnosed with something you know is going to disrupt their hopes and dreams in one way or another, it’s going to disrupt yours. You have to kind of let yourself grieve a little bit.
Say, “Okay, this isn’t the hand I wanted to be dealt, but I’m going to have to deal with it along with my loved one. If I need some support in doing that, I need to go get it. Otherwise, I’m not going to be any help.”
Going on anti-anxiety medication
It was for me less depression, but more anxiety. It’s like being immobilized by, “Oh my God, this is something I’m not sure I know how to deal with. Oh my God, my dearest loved one could die from this.”
I didn’t know what treatment was going to be like. Some people, I think, can say, “This is what it is. Let’s move on. Let’s do it together.” For me, I had to process the emotions and the fear. There was a fear as well.
Over time, I’ve learned to put certain feelings in boxes. I think that’s a skill that gets learned along the way, especially with something like a chronic cancer or a chronic disease.
You kind of worry when you have to worry, and otherwise kind of put it in the back of the closet. “I’m not going to worry about this now.” I may be jumping ahead, but that was something that I felt like I needed to learn. Save my real worrying for when I really have to worry.
How were your emotions day to day?
This is just for me how this was. When I would start to think about what could happen, I was looking at a man that looked very healthy to me, but I was told that at some point he’s going to need treatment, that it’s cancer. When somebody still says “cancer,” you don’t want this in your life.
For me, it was trouble getting to sleep at night, palpitations, my heart would race, crying. “I don’t know what to do. I don’t know how to function, trying to keep it together for the kids and not frighten them.” There was a lot of just not feeling good at all.
That was the stuff I felt like I had to get past. I had to figure out how to function normally. Counseling, medication for me and regular exercise helped. Also, having conversations with other loved ones who were supportive, whether it was my mom, my brother, a best friend. What I needed to do is build that network for myself while Andrew was building his network. Sometimes they overlapped.
How did you figure out the right people to talk to?
As far as the people, let’s start there. As far as the support system of friends and family, I chose my mom. She was a social worker, so she was very tuned in to that. She also knew me best.
My father was more of an engineer, pragmatic kind of guy. Not that I couldn’t talk to him, but I had a different relationship with him. I’d always shared very emotional things with my mom, so I chose her for that reason.
I had a couple of friends. My recollection is I had a couple of friends who, in their family, they had dealt in one way or another with a serious condition. They had gone through what we were going through, whether it was with a spouse or a parent or a child. I figured that they could relate and maybe help me kind of pull apart what was going on for me and give me some advice for how to manage that.
Peers are selective because I knew there were certain people in my life, acquaintances, that would just say, “Oh, my God, oh, my God.” That wasn’t going to help me, and it wasn’t going to help Andrew. That was a process of really looking at my relationships and saying, “Where could I safely and effectively get that support?”
Research and Tools
How did you and Andrew approach researching CLL?
Andrew, by his own nature, was a journalist and wanted to know the answer to everything. I’m a project manager by nature, so I’m a researcher in putting things in order. In that sense, we work together.
One of the first things we knew we needed was, “What the heck is this?” We’re like, “Okay, they said it’s some sort of a chronic cancer. Well, what does that mean?”
We were also told, “You probably aren’t going to need treatment for a while.” We were confused. Our way of together dealing with it is to try to get as much information about what we were dealing with. What is a chronic cancer? What was this cancer, different from that cancer?
At that point, we were working together on it. I think we went back and forth. Andrew’s quite stoic. I don’t mean that he doesn’t feel things, but he’s a pragmatist. He just sort of pushes through them.
There were things that I just said, “Andrew, you find out what we need to do and tell me what I need to do to support you.” In other cases, I said, “You know what? I need to understand this, so I’m going to go and get the answers.” It’s really teamwork.
Can you describe the tools you’ve developed to help?
Tools first. If you are not functioning well and feeling adrift and feeling anxious, don’t be afraid to look for outside help. You’re probably not going to get that from the patient, because they’re dealing with their own things. You need to seek counseling and seek peers who will understand what’s going on, like family members. Get support.
If you find that there’s physiological things going on, sometimes for some people — whether it’s medicine or marijuana or other supplement, acupuncture, exercise, yoga, meditation — any of the things that can help you feel centered and in control of your own emotions so you can think clearly is really important.
We were talking a little bit about compartmentalizing. Over time, when there were bad milestones [like], “Uh-oh, my person needs treatment or numbers are going in the wrong direction in blood tests,” my tool has been, “Okay, is this something that I need to worry about right now, or can I save my worrying for when there’s something really drastic that warrants pulling out all the stops?”
I’m going to worry, I’m going have a good cry, and I’m going to go back to a counselor. I will get through this. I think that’s the best way for me to describe the compartmentalization. Also, the one other thing is living in the moment.
At my darkest times when I’ve just felt like I could see a potential train wreck coming, I say, “I don’t know if I’m going to get hit by the train, so I’m here right now. My loved one is here right now. We need to live in this moment.” It’s a practiced skill, and I’m not always successful at it, but it’s something to work on.
What is the main takeaway for caregivers?
I would say to anyone who has to support somebody with a serious illness, you need to take care of yourself as well as you take care of the person that you love so much who’s going through it. If you want to be there for them, you need to figure out how to stay stable, how to stay the course, and do what you need for yourself so that you’re fully there to support the person that you love.
Barbara Kivowitz, Caregiver Expert & Author “A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”...
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.
While I’d like to plan for next month, next year, 10 years from now, I don’t know if I have that. So today the answer’s yes.
Andrew Schorr
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.
We reached out to a friend of ours, who was sort of a computer geek. Now, remember, this was 1996. There wasn’t a lot going on on personal computers then. Internet speed was really slow.
He came over on our little home computer, and he said, “There’s a news group for people with blood cancers. Maybe you should join and correspond with other people and find out more about this.” So I did.
The lady who ran this group was a woman named Barbara Lackritz, who was a school speech therapist outside Saint Louis and had chronic lymphocytic leukemia, which was the diagnosis I ended up receiving. I typed her a note, “We’re terrified. Can we call you?” We talked to her on the phone. Again, it was one of those spring nights.
Her famous words were, “Chill out. You’re not going to die anytime soon. There are certain doctors who specialize in this illness. My advice to you is to connect with them.”
That is what ended up happening. A couple of things there. One is you don’t know anything about leukemia. You don’t know anything about cancer. You feel your life is over and you don’t know anybody who has it.
Eventually I met other people in Seattle. We started having lunch together. We connected on the Internet and said, “Let’s do lunch.”
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?”
And, “Oh, I am.”
“I am.”
“I am.”
“I am.”
“Let’s do lunch.”
You go into a restaurant, and there are these people who look pretty normal. They don’t look like they’re at death’s door. You go over, and you say, “I’m Andrew.”
“I’m Gary.”
“I’m Carol.”
“I’m Frank.”
“I’m Susan.”
“I’m Pat.”
We all have a diagnosis of chronic lymphocytic leukemia, and some of them had had it for a while. We had different doctors. Some, I think we had the same doctor. It became very comforting. Then I think we started doing that monthly. Connecting with other patients was tremendous support.
Now, I will tell you, over time, we realized that chronic lymphocytic leukemia was not the same for all people. One person, Gary, had a transplant and ended up later passing away. Somebody else, Pat, who I’m still friends with years later, never had treatment.
Then I was in the middle, where eventually I did need treatment. I just think of us around the table and it became very real that there were other people who were dealing with the same condition. We had something in common, and we were willing to share.
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.
Clinical Trial
Why did you decide to join a clinical trial?
I knew nothing about clinical trials and I would say I was at the starting point [like] many people. They say, “I don’t know if I want to be a guinea pig. What are they going to do to me? Will it really benefit me? Could it benefit others, etc.?” I just wanted to get well.
However, I had already connected then with a world-famous leading leukemia department at MD Anderson Cancer Center in Houston and one of the leaders in the field, a fellow named Michael Keating. When he recommended to me that there was a clinical trial that they were doing, they were the only site in the world adding a targeted therapy, a non-chemo drug to the existing chemotherapies.
They’d already had some experience with it with sicker patients, but they felt it could work for patients who weren’t sick, who were newly diagnosed, had no treatment and that it could do even better. I thought about it, and by then I was starting to develop symptoms after 4 years: swollen lymph nodes and large spleen, fatigue, etc.
There were other trials going on at the same time, including in Boston for a bone marrow transplant. In a bone marrow transplant, you’re kind of out of pocket for the better part of a year. With this other treatment, I was going to be able to continue to work most of the time, so that sounded more appealing than the bone marrow transplant.
I should mention that eventually the bone marrow transplant trial was stopped, but I’d already made the decision to go this other direction. So what did I do? Again, I went back to where I’d been at the time of diagnosis, and that is to connect with other patients. I went online.
“Hey, does anybody know anything about this clinical trial?”
This person in Texas, because it was MD Anderson, said, “I’m a schoolteacher. I’m on that trial.”
“I do roofing. I’m on that trial.”
“Can I talk to you on the phone?”
I did, and I said, “Are you glad you’re in it? Are you glad you’re doing it?” They all were. That patient-to-patient connection gave me some confidence, and [with] the leading scientist doctor, I had to say yes.
It’s scary when you do it because they give you a whole bunch of papers to sign. There were some patients who died very early in the trial, so there was this big black box: “You could die,” basically. Lots of legalistic stuff.
You have the doctor, you have the research coordinator, you have the research nurse, all these people in white coats. My wife, Esther, and I were sitting there. “Sign here.” And we did.
We said, “Okay, when does this start?”
They said, “In about 4 hours. You’re going to that unit, and you’re going to get an infusion.” That’s what happened. I started right away, and that was 6 months of treatment.
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.
The Houston expert said, “No disrespect for your HMO doctor, but you don’t need treatment yet. When you do, I’ll probably have a clinical trial that would be an option for you and we’ll discuss that. Go home.”
I should also mention that the “go home” was because we had thought of having a third child. He said, “Go have your baby,” which we did. There was a disconnect between the HMO doctor back in Seattle.
I went back to Seattle, and I said, “Dr. Keating says, ‘Wait,'”
“Okay.”
“And that maybe there’ll be a clinical trial.”
“Well, okay. Let’s see.”
I let Houston drive the bus, and the HMO doctor just nodded his head. What happened? We had to work out the logistics. When I needed treatment — swollen lymph node, enlarged spleen, fatigue, etc. — the trial was ready.
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.
Phases in a clinical trial
Phase 1 is typically first in humans. That doesn’t mean they weren’t testing it in the lab on animals, etc., but first in humans. Often that’s with the very sickest people, where they’re sort of out of options often and that’s a phase 1 trial.
Phase 2, they have it pretty well figured out. Now there’s a larger group, maybe 100 people or more. They’re working. They’re tweaking the dosage. They’re really monitoring for safety, looking for any side effects, anything like that. Fortunately, I didn’t. I had nausea, but I was able to continue the treatment’s 6 cycles.
Then a phase 3 trial often goes worldwide. Now it’s on hundreds and hundreds of people as they’re really getting further data, and they’re looking for little signals of whether side effects or what they call adverse events (things that they don’t want to have to happen) show up.
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.
Then you need to consider, if it’s not approved medicines, is there something that’s experimental in a clinical trial that could potentially offer you an advantage? That was the decision I made, that the traditional approach was not great. It was pretty toxic and did not cause a long remission.
I was 45 years old and then at the time of the trial, 49. I wanted to have a long life. I’m 71.5 now, so obviously it made a big difference. I think you have to really think about your future with people you trust and that’s what I did. It ended up being the right decision, for which I’m very grateful also.
We went ahead and had the hug from our doctor. Keating hugged Esther and said, “Go have a third child. You’re going to be around a long time.” That kid’s 25 years old now. It’s given us a lot of joy. He’s been a kid, so [there were] ups and downs, but we never would have had him. Every time I see my son, that’s a sign of the gift I was given by modern medicine.
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.
I, in a respectful way, said, “I know you’re a very devoted doctor, but I want to go the extra mile.”
He said, “We’re not going to pay for you to go get a second opinion, but it’s your right.”
Well, guess what happened? I was eventually in the clinical trial, which was coordinated by MD Anderson Houston and the HMO clinic in Seattle, where I lived. I got them to work together.
How did you get them to work together?
By saying, “Here’s a world-famous doctor in Houston. He signed me up for this clinical trial. You have the medicines available in Seattle. Will you kind of play ball?” They said they would.
I got the remission, and I went back to see my doctor for a check-up in Seattle. I said, “How are you treating other patients now with CLL?”
He said, “Andrew, the same way you got treated because I, as an HMO doctor, learned from your experience being in the trial.”
Lessons about Living Life
What was it like going from the clinical trial back to normal life?
I think the word that applies then but applies every day is “uncertainty.” You don’t know if another shoe is going to drop, either from the medicines you had or from the illness that’s not cured, because it wasn’t cured. It was knocked back. I was in remission.
I would develop a cold, and I realized this pattern over time that it always led to a sinus infection. Then, even though they hesitate to use antibiotics broadly, I always needed an antibiotic and maybe a second course.
You begin to see a pattern of life after treatment. You try to take control of it with your local doctor, and so we did. As a cancer survivor, you’re always concerned is that ache and pain — or that cough you have or whatever — the sign of something more serious?
In the case of CLL, what you’d worry about would be getting pneumonia, which could be fatal. That’s what people with CLL die of: an infection that your body can’t fight off. You have to stay ahead of that. If you have a cough, “Oh, my God, is it leading to pneumonia? Should I call the doctor right away?” You have to take responsibility for that as a patient.
Always saying yes
But that said, the days you feel good, go for it. One thing I’d say about life after treatment is when people invite Esther or me for something or together, invariably I feel the answer’s yes. Do you want to go out to dinner? Yes. Do you want to come to a show with us? Yes. Do you want to go on a bike ride with us? Yes.
Why? Because that’s what life’s about. While I’d like to plan for next month, next year, 10 years from now, I don’t know if I have that. So today the answer answer’s yes.
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.”
Going through Treatment Again
Why did you have to get treatment again in 2017?
I knew that I was not what they call MRD negative, or minimal residual disease or measurable residual disease negative. One of my friends, Dr. Wierda at MD Anderson, had done a test, and he said, “It’s going to come back sometime. It’s going to show up.”
I had that in the back of my mind. Then here in San Diego with monitoring from my doctor here, Dr. Kipps, we could see the white blood count go like that. It did come back. I wasn’t shocked that it happened.
Then okay, it worked before. What do we do now? It wasn’t the same treatment. It was sort of more modernized treatment. And guess what? That was in 2017. We’re in 2022, and the CLL has not been a factor after going through those cycles of that treatment.
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.
Reacting to the steroid
The steroid was a funny part of it, because when you get steroids, you can get pretty hopped up. They were giving me medicine I could take if I was having trouble sleeping, and I was. But when it wasn’t time for bed, which was most of the time, I was cleaning the house or shopping for groceries.
Esther just sort of sat there while I’m [whooshing around]. If you had a fast-motion camera, you’d see me going all over the house, doing things, going on errands, fixing things, really wired. Then at some point, you crash, and then you do it again. But it worked.
How did you manage the roller coaster of emotions?
You’re going to get through it. I think for anybody who’s been through cycles of cancer treatment, you’re in this tunnel, in a way, but there’s light at the end of the tunnel. There’s a date when you believe you’re going to stop.
You’re getting powerful medicines. You understand that they likely have some side effects. You just have to get through it. When I was originally treated, I developed increasingly serious nausea. If I walked into the clinic, just the smell of the clinic made me nauseous, not even having treatment.
There’s a goal, and the goal is that the treatment hopefully will be finite, and your disease will be controlled. That’s happened to me a number of times.
DVT and Myelofibrosis Diagnoses
DVT diagnosis
I never expected to be diagnosed with anything other than a recurrence of chronic lymphocytic leukemia. Never expected it. I would go to the gym with my wife, Esther, early in the morning, and I noticed that I was getting leg pain in my right calf. Pulled a muscle, right? Gym, makes sense.
It continued a second day and a third day. We were actually at a shopping mall near where we lived. This was in Bellevue, Washington. We’re going from one side of the mall to the other, and I’m limping, trying to disguise it for Esther. I didn’t want her to really say, “What’s wrong?”
Anyway, it’s in the evening. We get home. She’s putting our youngest child to bed. I’m kind of concerned, and so I called the consulting nurse through our insurance company — the little number on the card if you have that kind of insurance. The nurse said, “I’m going to get the doctor to call you.”
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.”
Going to the hospital
I snuck out of the house at like 11:30 at night. I didn’t want to wake them. I drove to the hospital. He had called the emergency room to tell them I was coming. They did an ultrasound. It was the weirdest experience because the ultrasonographer, in those days anyway, she was moving the ultrasound wand around your body, and then she was talking to the machine.
I guess it would make some recording for the radiologist or whatever. I had no idea what she was saying. She did the right calf, and then she did the left leg. I said, “Why are you doing left leg? I don’t have any pain there.”
She said, “That’s the protocol. We have to do that.”
I’d had a cough at the time, by the way.
A little while later, the emergency room doctor came in. He said, “Congratulations, you have a DVT, a deep vein thrombosis, a blockage in your right calf. You also have one higher on your leg on the left side that you don’t feel, but it’s there. And guess what? You’ve got pneumonia, and I’m putting you in the hospital now.”
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?”
He said, “We did genomic testing. You have the condition, and it’s driven by the gene called JAK2 V617F.” This is like gobbledygook, right? “Therefore, we know it’s myelofibrosis.”
I said, “What do you do about it?”
He said, “Nothing right now. Someday you might need a bone marrow transplant.”
I was scared. The only other thing I’ll say about the diagnosis was I’m now at a convention of 30,000 hematologists. Now, I knew a lot of them from CLL, and they were very upbeat about new treatments for CLL, which have continued. They were very upbeat. “CLL, oh yeah, we got a lot to offer patients.”
I said, “I may have this other condition, myelofibrosis,” and their face would fall. I knew it was fatal, potentially fatal, and that they didn’t have a lot to talk about.
Myelofibrosis treatment
I happen to know the doctor who is world famous, who had interviewed previously about myelofibrosis, although I didn’t know much about it.
He said, “Come see me in Houston.” He was an MD Anderson specialist, a world expert. He said, “We’ve got something to talk about now.” The funny thing was, at the same convention, they have exhibits of different drug companies and stuff like that. There was this little booth for a company that had just gotten approval for the first inhibitor of this JAK V617F gene to tamp it down for people with myelofibrosis.
Guess what? A few months later, that newly approved drug became my treatment, and it was highly effective. Diagnosed with something I never heard of again. Stranger in a strange land. Thank God medical science had something to offer, which worked.
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.
I think Job 3 is to have hope that with the right team, with the right diagnosis, that either now or coming soon, there may be something that can help you. If that helps you but peters out, there may be something waiting in the wings to help you even better. That’s what’s happened with me.
Switching in 2020 to another recently approved treatment
The original medicine I was on to inhibit the myelofibrosis, the trade name is Jakafi or Jakavi outside the U.S. The generic name is ruxolitinib. You learn these long words.
Then when I came to San Diego on that drug, eventually my specialist — who’s also a scientist and had done a lot of the groundbreaking work in another drug in that class, fedratinib or trade name Inrebic — said, “I think this may offer you some advantage. Let’s consider changing to that.”
I did, and it’s worked well. I trust in my doctor. Both medicines have worked well, and I’m leading a pretty good life.
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.
My doctor, Dr. Jamison, has had good results using a drug called Reblozyl (the trade name). Luspatercept is the generic name. It’s not approved for myelofibrosis, but she’s getting Medicare to pay for it through some scientific argument that I don’t understand.
You get a shot pretty quick, either in your belly, your abdomen or your arm. The nurse gives it to you at the clinic. That boosted my hemoglobin from a low of 8.8 to 11.5. What did that mean? It made the difference for me. Huffing and puffing going up a flight of stairs to being able to ride my bike and not feeling like I needed to lie down. I’m very, very grateful for that.
I’ve done that about 3 or 4 months now, and I’m very grateful that that exists.
How have you managed everything?
I think you have to be a proactive patient. It may be your spouse or your adult child or your best friend. I think you have to look for answers. Not false answers, not phony answers, but you have to look for real answers and providers who are knowledgeable.
I’m very grateful that I’ve been able to do it. But I had to look. I had to push for that. I had to be a consumer. So many people are smart shoppers about buying a house, buying a car, buying a new sweater. Why should it be any different if you’re facing a life-threatening cancer? You’re not a little lamb. You and your family are consumers, so be savvy.
I would say be positive. We’re going to find the right answer. We’re going to find who’s in the know. We’re going to find and get a full understanding of our options. Both what’s approved, what’s maybe experimental, what could make sense. We’re going to find out where there’s financial assistance.
In the meantime, we’ve been given time. If you’re having some good treatment, what does it give you back? It gives you time. Then you can’t say, “I’m going to ‘woe is me’ and mope.” You have to say, “I’ve been given today. What am I going to do with it? What am I going to do that’s positive today?” That’s how I approach every day.
When Jeff started experiencing fatigue and night sweats, he didn’t expect to be diagnosed with chronic lymphocytic leukemia (CLL).
Jeff’s story includes undergoing watch and wait, joining a clinical trial, reaching remission and going back on watch and wait.
Along the way, Jeff learned some important lessons that he shares with us: getting a second opinion, cutting out unimportant things and finding humor in all situations.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Go live a great life, because it absolutely is possible.
The CLL Diagnosis
Introduction
Tell me about yourself
I always start off by telling people that I am a very shy introvert. I count to 3, and then I start laughing because that is 180 degrees opposite of what I truly am. From a very young age, I have been a public speaker. I loved being on the stage and connecting with people, and that’s one of the things that gives me a ton of pleasure. I continue doing it to this day.
As far as the best part about me, I think I have the most awesome daughters and awesome wife in the entire world. My family has been absolutely wonderful throughout this — we’ll call it a “journey.” It’s not a journey. It’s a pain in the butt. They’ve been absolutely great, and I love the fact that we have so much closer of a relationship now. I’m going to say that’s partly due to CLL.
What were your first CLL symptoms?
I was in my mid-40s at that time, and I just thought things were normal. I had some family history of some issues — some high blood pressure, some high cholesterol — and I was seeing my doctor regularly to keep that managed and under control. I like to use the term being a “compliant patient” [for] following those instructions.
I really didn’t notice that the symptoms I was having were out of the ordinary. I love Thai food, and I eat a lot of Thai food. Occasionally, I would get night sweats. I was thinking, “Hey, that’s just eating too much spicy food before I go to bed.”
I was tired all the time, and I was like, “Okay, this is what it’s like to be male hitting midlife, and you run out of energy.” It turned out that was wrong.
I’m very fortunate that my GP, who I still see every 90 days, was keeping tabs on things. He said, “Look, something’s wrong. I don’t know what that something is, so I’m going to get a pinch hitter. I’d like you to go see a hematologist, and let’s find out what’s going on.” And that’s what I did.
The CLL Diagnosis
What was the first indicator to you that this is something very serious?
Unfortunately, I remember exactly how I felt throughout that entire process, because it was a part of my life where everything changed in a very compressed period of time. My GP said, “I need you to go see a hematologist.”
I was like, “No problem. I see specialists all the time.”
He said, “I’m going to make the appointment for you.”
Okay, fine. The appointment was made for the next day. Great. Not a problem. I was doing okay right until I got into the hematologist’s office. I didn’t think that cancer was a possibility, and I didn’t think anything major. It was, “My doc wants to check off some boxes.”
Literally, it was like somebody had taken a baseball bat, swung at full speed right into my gut, and just took all the air completely out of me.
Seeing the hematologist
When I walked into the hematologist’s office, everybody in there was old, ugly and sick. That’s what it looked like to me. I realize that sounds like a generalization, but I’m thinking to myself, “What in the heck are you doing in this office?”
[I] got ushered into the back, and the hematologist looked over the blood test results that my doctor had sent over. He said, “Nope, I want to do this myself.” They drew some blood, and he said, “Nope, this is not good. I need you to come in tomorrow. Bring your wife. She’ll have to drive you home. We’re going to do a bone marrow biopsy.”
Jeff spoke at the high school for his daughter Zoe’s class.
I can give you a really detailed description of what a bone marrow biopsy is, and I guarantee you you’ll feel it after I tell the story. But the TL;DR (too long; didn’t read) is you lie down on your belly, they shove a corkscrew in your hip, and they pull out a bunch of tissue.
Then 24 hours later, I learned that I had leukemia. In a period of 48 hours, I go from being a tired, middle-aged dude to, “You’ve got cancer.”
What was your reaction?
The moment was a phone call from the doctor, not the doctor’s nurse. He had reviewed the bone marrow biopsy results, and he said, “I would like you to come back into the office with your wife.”
I said, “Well, I kind of know where this is going. Why don’t you just tell me what’s going on?”
He said, “No, that’s not how we do things here.”
I said, “This is how we’re doing things here. I promise I’ll come in tomorrow, but I need to know what’s going on.”
He said, “Mr. Folloder, you have leukemia, and you need to come in tomorrow so that we can discuss how we’re going to treat it.”
Literally, it was like somebody had taken a baseball bat, swung at full speed right into my gut, and just took all the air completely out of me. My wife and I freaked out — and I still get misty about it — but we kept our word.
We went to the doctor again the next day. He scribbled some things on a pad, and he tried to explain what chronic lymphocytic leukemia was and why it was an important cancer. Then he said, “We need to start treatment right away.”
I was like, “Wait, wait. I’m just a little bit tired. Why do we have to start treatment right away?”
He said, “I want to put you on what we call the gold standard of care,” which was a combination therapy called FCR that was very popular at the time and is still used somewhat today.
I started taking very deep breaths. Then for whatever reason, he decided that it was important to tell me that I should expect to live 6 years. That’s when I stopped breathing heavily.
I was like, “Okay, this is a lot to digest. My wife and I are going to head home, and we’re going to talk about this. We make decisions as a team.”
Patient-Doctor Relationship
Deciding to get a second opinion
We got home, and we started talking. I looked at my wife, Penny. I said, “He’s fired.”
“Wait, what? What?”
“He’s fired. I’m not going to work with anybody who’s putting an endgame on my life right now. I don’t feel comfortable with this guy.” We’ve got friends and family that work at one of the greatest cancer centers known to the entire universe. It was time to get a second opinion, like right now.
‘You may die with this. You’re not going to die from this. What we’re going to do now is absolutely nothing.’
Jeff’s 2nd Doctor
I called up my aunt, who worked there at the time, and told her what was going on. I said, “Look, I get it. The diagnosis is not going to change.”
She said, “Well, you’re probably right about that.”
“But where you are, the treatment options are huge. I want to make sure that the treatment that I get is the right one for me, so can you get me a hookup?”
It’s very bizarre for a mid-40s somebody to be asking a mid-60s aunt to “get me a hookup. I need to see the right doctor.” But that’s exactly what she did. Literally that same week, I got into that hospital, and I saw one of the world’s leading experts on CLL. My entire trajectory changed for the better.
Can you describe the concept of firing your doctor?
Not every doctor has the best training in how to communicate with patients. Some do it much better than others. For me, having a sincere, candid conversation that’s not dismissive is crucial to me being able to relate to the doctor and to be able to be that compliant patient.
My doctor, that first one, had basically already written me off. In my playbook, that wasn’t going to work. In the communities that I help lead and help advocate for, we tell everyone, “Your doctor can be great, but you have to get a CLL specialist on your team.”
He doesn’t have to play the lead. She doesn’t have to play the lead. But you owe it to yourself to get a CLL specialist as part of the team. Even though your local hematologist may mean well, they’re seeing every type of blood cancer patient.
A CLL specialist, that’s it. All they do is CLL, and getting that perspective can be life changing and mind changing.
To put a really bright underline under that, the person that I saw at this giant hospital in the Houston area asked me, “What did the first doctor want to start you on?”
I told him, “He wants to start FCR right away.”
He said, “That’s really interesting.”
I said, “Why is that interesting?”
He said, “I helped invent the FCR treatment. I know all about the FCR treatment. It’s a really good treatment, and yeah, he’s right. It’s a gold standard. But it’s not right for you.”
I took a really deep breath, and I was like, “Okay, this doctor is really out there in terms of how big his ego is.”
“I invented it.” That’s kind of cool. But he was able to bring me down to a calmer place. “We’re not going to do that because I don’t think it’s right for you.”
I was like, “What is?”
He literally picked me up off the chair, gave me a hug, and said, “Look, you may die with this. You’re not going to die from this. What we’re going to do now is absolutely nothing.”
I was like, “Hold on a second. It’s cancer. We’ve got the early diagnosis. What about the whole program — find it early, attack it hard, go after it, then go live your life?”
Jeff with John Brown, who he describes as a father figure from diagnosis through treatment and relapse.
He said, “Yeah. Sorry. Not how this disease works. We’re going to keep eyes on you, we’re going to keep eyes on your blood, we’re going to keep eyes on your symptoms, and we’re going to keep eyes on, ‘How is Jeff doing? How is Jeff living?’ We are here to help you have the best possible life, so we’re going to monitor closely. When it’s time, we’re going to treat you with the best thing that’s available for you at that moment.”
That’s exactly what I needed to hear. That’s the kind of doctor relationship that I needed. Tell me what’s going on. Don’t pull any punches. Make it personalized. At least connect with me as a human being to make sure that I understand you get it. Living a great life is important. That was a big deal.
He also picked my wife up out of her chair and hugged her, and she was like, “Wait, why am I getting this hug?” But be that as it may.
Working with both your local hematologist and a large cancer center like MD Anderson
That is a very common setup. There are great cancer centers all over the United States — all over the world, actually. A lot of them are just doing amazing research and doing some really cool clinical trials and good work to connect with the CLL community. They do realize at their core that as hard as we try, as great as some people’s insurance is, it’s just not possible to make that physical trek to a center of excellence, if you will.
Most of the professionals that I’ve talked to in my patient advocacy work refer to it as the quarterback scenario. The local guys, the local gals — they’re the team. They’re the ones who are meeting you face-to-face and making sure that your care is done on a regular basis.
The CLL specialist absolutely can be seen every now and then, or just once to call in a play to make sure that your local people are on top of what the latest and greatest are. I know lots of people who do just that, and they’re getting great care.
The importance of finding the right doctor
It is something that does have a long-term element. I’m couching my words very carefully right now, because when I was first diagnosed, nobody used the word “cure.” [It] was not part of the language of CLL. Here we are, a dozen-plus years down the line, and for a bunch of subsegments of CLL, the doctors are now starting to toss that word around: “cure.”
This could be a long time, but for some of us, that could still be a finite long time. We see the end of that road. It is really, really important to connect with your doctor as someone that you can get along with. I remember very early on, I was connected with a person on one of the Facebook support groups who wanted to come to the Houston area and meet with the same doctor that I was seeing at MD Anderson. I thought it was great.
I said, “Look, I know this is going to be scary because you’re coming in from Florida and this, that, the other thing. I’ll tell you what, I can carve out some time. I’ll come meet you at the hospital. I’ll sit with you while you’re waiting to see them. We’ll chat and we’ll get some lunch.”
She did the appointment. She came back out. I went, “How did it go?”
“Can’t stand him.”
I was like, “Wait, what?”
“No, he and I? No, this is not going to work.”
“Tell me what you don’t like,” and she did. I said, “I got this one,” and I wrote a name down on a piece of paper. I said, “Not right now, [but] when you get home, call this doctor. Sorry, she’s not in Florida. She’s up in New York, but I think you’ll get along great with her.”
Sometimes you don’t make that connection the first time. Even if you’re seeing one of the greatest CLL specialists in the world, the personalities may not perfectly mesh. Keep trying. It may take 1, 2, 3, 4 appointments, but you have to find somebody that you can be comfortable with, because this is going to be a long-term relationship.
The patients and their caregivers are not nearly as polite about it. “Watch and wait” is on the borderline of being sarcastic because sitting there doing nothing is so 180 degrees from what everybody has been told about cancer for their entire life.
While you’re in watch and wait, you may be watching. You may be waiting. But you’re worrying, and you’re freaking out about every single, solitary thing because anything that goes wrong, you [think], “That must be the cancer. That’s the CLL kicking in. I’ve got a rash. Ooh, that must be CLL. I can’t do this. Must be CLL.” It becomes this waterfall that you just can’t escape, and it’s constantly beating on your head.
Can you explain getting through knowing you had cancer but not treating it?
I think the best word that I can use to describe watch and wait or conscientious surveillance is that it’s “oppressive.” That’s the best word that I can use for it, because every day you do have to parse all the things that you’re feeling and figure out what can be dismissed as just being normal and what is actually salient that you need to communicate to your team.
Every time you go to have a meeting with the team, they always tell you, “We want to know everything. Don’t leave anything out.” Of course, I started this off like every typical male patient ever does. I would go in for my regular appointment. In the beginning, I always brought my wife with me. The nurse practitioner would come in. The first question that was asked was, “So, how are we doing today?”
My typical male response was, “Fine,” and I left it at that silence.
“So you’re doing okay?”
“Yeah.” My wife [was shaking her head] back and forth.
“Ma’am, you want to tell me what’s wrong with your husband?”
It’s learning how to get past the, “I’m a strong man. I can’t show any weakness,” to, “Okay, I got some crap going on. Here’s what’s happening. What do I need to be worried about?”
As we progressed through not just months but years of that watch and wait, I learned how to be a better communicator with my doctor, with the mid-level practitioners and with my wife about, “Okay, this is important. This is not so much.”
What helped you with the oppressiveness of watch and wait?
I am what most would consider a Type A personality. Add on a soupçon of OCD, and you have a really good description of how my life has been. My biggest problem right up until my cancer diagnosis was that I was an inveterate list maker. I would make tons and tons of lists of all the stuff that I had to get done: stuff I had to get done short-term, mid-term, long-term, plans. This, that, the other. That’s how Type A people are.
The oppression of watch and wait combined with that was not a good mix. As a matter of fact, it was somewhat toxic, and I was getting very frustrated with myself. [I was] getting very frustrated with my family, getting frustrated with my cancer, and getting frustrated that everything was conspiring to make sure that I didn’t get stuff done. Quite frankly, that sucked because that’s not how I had lived my entire life, and I’m not exactly sure what all came together.
It was probably about a year into watch and wait when I came to the realization that I simply couldn’t do it all anymore. It’s not that there wasn’t enough gas in the tank; it’s that I didn’t have enough bandwidth to do everything all the time, 24/7, anymore because things had changed.
I did pull out one of those classic bright yellow legal pads, and I drew a line down it. On the left was stuff that I keep, and on the right was stuff that I throw away. I literally made a big important list that said, “This is all the stuff that’s worth doing. This is all the B.S. that just doesn’t deserve my time right now.”
I stopped doing that B.S. stuff. I cut a bunch of stuff out of my life, and I told people and commitments, “Sorry, you’re on your own.” I had to claw back time for myself. That is how I dealt with watch and wait. I was able to pull up the parking brake and do something that not many people get an opportunity to do, which is reevaluate your life, throw away all the bad stuff and focus on the good stuff.
Self defense training as a stress reliever
Did you cut out relationships and tasks that weren’t meaningful?
It’s all of the above. An example would be: most Type A OCD leaders believe that the best way to do a job is to do it yourself. I wound up doing everybody else’s job in addition to doing my job, and that came to a crashing halt.
“Well, here’s the deal. I hired you to do this job. Do your job. If I don’t like the way you’re doing it, I’ll find somebody else to do your job.” That sounds very perfunctory, but it was a life-changing moment for me because I no longer took it personally. If someone that I worked with failed, it wasn’t my fault. It’s their fault. I could put that on the “do not do” side of the list and make it go along.
As part of still living life, Jeff went to a ZZ Top performance.
Having a mindset change
I was traveling a lot for work. This was long before COVID, everybody discovering Zoom and teleconferencing, and all that stuff. I stopped doing a lot of the traveling. I started taking more time to do the things that made me smile.
[It could be] something as simple as instead of getting on a plane and flying to Atlanta, jumping in the truck, driving, actually enjoying the drive and seeing the country. Put on some jazz. Smoke a cigar while I’m driving (don’t tell the doctors). Have a good time. It was a mindset change where the important stuff is important.
Let’s make sure I have enough energy to do the important stuff instead of shortchanging the important stuff. Things like dealing with neighbors’ problems. It used to be, “Hey, I’ll get this taken care of for you. I know who to talk to.” No, not on my list anymore. I realize that a lot of this sounds trivial, and it is trivial right up until you realize how much time and energy you’re wasting on a lot of that stuff.
Asking for Help
How does financial toxicity affect people?
The financial toxicity side of this is the biggest fear stop sign that I deal with in these support groups. Everybody is really, really jazzed about the fact that we’ve got so many new, good, effective treatments coming. Everybody’s really, really thrilled about the fact that side effects are easy to manage. They’re really, really pumped about the fact that access to these is becoming more and more widely available.
What takes the wind out of their sails is $4,000 a month, $10,000 a month, $13,000 a month or $27,000 for a bag of medicine. People wonder how they’re going to get that bill covered because there’s so many different questions. We don’t have enough time. We don’t have enough energy. There’s not enough gas in the tank to debate the health care system.
Medical insurance, at least in my mind, is not insurance. It’s a way to spread the payments over a lifetime. Some people have programs like that. Other people don’t. I struggle with that because I know that there are patients who could be helped who can’t access that help for want of money.
Not knowing about assistance programs
There are programs out there, foundations, associations, nonprofits and even the drug companies themselves. All of them have a whole bunch of fabulous programs that can help people with the financial burden. The big problem is people don’t hear about that until long after they get the price tag upfront.
There’s no shame in saying, ‘Yes, I need some help.’
You get the shock, you get the freak-out, and you get the, “Oh my God, I can never do this.” Then maybe you’ll get information about how you can cover shortfalls down the line, or maybe you don’t get that information and just walk away.
That’s disturbing and upsetting for me because, yes, I believe that everyone should have access to this medicine. That doesn’t always come through right now. I want everybody to be helped, and I can’t help everybody.
What are some of the assistance programs?
The first 3 that I bring up:
The Leukemia & Lymphoma Society (LLS). These folks have great education programs. They have great learning programs. They put a lot of stuff on the plate, and they also have patient assistance programs. People can apply for these programs. They open and close regularly, and most of them don’t even have an income barrier. Sign up, and you get an LLS gift card to help defray your costs.
The PAN Foundation is a great group of people who do nothing but make sure that people who need patient assistance get patient assistance.
Then the third one, which I think is the most important one: the drug companies themselves. Everybody forgets to go ask the drug company. Quite frankly, although we’re talking about this in terms of cancer, any medication that you’re prescribed that doesn’t have a generic, I always recommend [to] go to that company’s website. Chances are there’s a copay assistance program available for you. They’re there, and they’re available.
If somebody wants to give you $10, $50, $1,000 or $10,000 to help you with your treatment program, take it. There’s no shame in saying, “Yes, I need some help.”
What’s your message to folks who are nervous about asking for help?
This is critical to a successful patient experience. If you’re male [you think], “Everything is okay, and nobody’s going to see me being vulnerable.” It doesn’t quite work. I know it’s part of being a guy, but it just doesn’t quite work. This is heavy stuff. This is big stuff, and there are people that can help you with that big stuff.
I was having a conversation with a gentleman who actually, of all things, was my life insurance salesman and is still my life insurance salesman at this time. I had let Keith know that I had been diagnosed with leukemia. We talked for a bit, and he said, “You probably need to call these folks at CanCare.”
I was like, “What’s CanCare?”
He said, “They’re a really cool support group.”
I was like, “No. Stop. I’m not sitting around in a circle singing Kumbaya with everybody and learning how to pass a peace pipe. No, not going to do that.”
He said, “No, they do things a little bit different. There’s no group support thing that they do. You call them up and let them know what’s going on, and they match you one-on-one with someone who’s just like you that’s gone through what you’re going through.”
I thought to myself, “That’s not bad. That sounds doable.” I called CanCare up, and I got connected. Lo and behold, I acquired a CLL Sherpa, and this person was like me. My age, male, same goals, family and all that stuff. He’d been there, done that and got the T-shirt.
Getting rid of some of the burden
It was great to be able to talk to somebody who knew what I was going through. Frankly, that’s getting rid of a burden. Watch and wait — it’s oppressive enough having cancer. It’s oppressive enough. Going through all of this is oppressive enough. Being able to get rid of some of that burden is a big deal.
If things aren’t going 100% right, let the team know. Let your significant other know. Let your best friend know. Let somebody know, because you can get help, and you don’t have to do this by yourself.
Jeff has a passion for F1 racing
Clinical Trial Experience
Joining a Clinical Trial
Time for treatment for CLL
I can remember the appointment that I had at Anderson when we were going through that evaluation. I said, “Yeah, the fatigue is beginning to kick in.”
They asked me, “Well, what does that mean?”
“That means that I’m crashing a lot earlier and a lot harder than I used to, and I’m missing out on some stuff.”
“What do you mean, you’re missing out?”
“I can usually stick it out, have an extra cup of coffee, maybe throw down a chocolate bar or something like that, and get everything done that I needed to get done. Now, sometimes I go, ‘This is going to have to wait because I don’t have enough gas in the tank.'”
That’s when my team went, “Okay, it’s time for treatment.”
I wanted to say, “Wait, all I had to do was say that earlier, and we could have started treatment?”
“No, we needed you to be honest, and you’re being honest.”
It was the combination of my blood work, my symptom load and my quality of life. That matrix all came together, and it was time for treatment.
Why did you decide to do a clinical trial?
For many, clinical trials are this big, scary thing that sounds like, “I’m going to be a guinea pig. I’m going to be a lab rat.” I’ve since learned that’s somewhat of a misnomer. A lot of times when you’re offered the prospect of a clinical trial, it’s not very on early in the clinical trial. It’s down the line.
As it was explained to me, “This will give you the opportunity to get access to medicine that we already know is going to be beneficial. We’re just fine-tuning it at this point. It will be as good or better than the standard of care.”
When it was presented to me in that way, my next question was, “So what happens if I get the placebo?”
“There’s no placebo. You’re getting the medicine. Downside: you may experience some side effects, but we think those side effects will be less than the standard of care.”
Pizza was the only thing Jeff could eat during treatment.
They need to be able to connect with patients who are the right targets for that treatment.
Jeff comfy in his flip flops at the hospital.
I said, “Okay, sign me up. I’m in.”
Then a nurse walked in with a stack of about 6 inches of informed consent that I had to go through. That was a bit of a nightmare. I was completely comfortable with my doctor, who had already demonstrated his prowess by saying, “I invented FCR. We don’t do FCR for you. We should do this because it’s going to give you the best shot at a complete remission for the longest period of time with the least amount of side effects.”
I want to ring this bell one more time: the fact that I was getting this message not from a generalist, but from a CLL specialist. This is somebody who eats, drinks, sleeps, breathes CLL 24/7. That doctor sees more CLL patients in a day than most generalists will see in a year. That has gravitas.
Later in a clinical trial, what are the other considerations and questions patients and care partners should be asking?
The very first question that they should ask is, “What’s this going to cost me?” We have to be candid. Medical research is really, really expensive, and it doesn’t always yield success. There’s a lot of swinging and missing that Big Pharma is doing in order to get a successful treatment.
When they get further down the line — stage 2, 3 and 4 of their clinical trials — they’re getting to points where we’ve got this. We’re just rounding this corner. We’re sharpening this edge. They need to be able to connect with patients who are the right targets for that treatment.
Like you mentioned earlier, CLL is not the most common cancer out there. In the United States, maybe there are 15,000 new diagnoses in a year, and you’ve got a couple of drug companies trying to create a drug for a small subsegment of them. Treatment sounds really, really good, but if I can get it for free, that sounds even better.
Even though I had great insurance at the time, quite frankly, my insurance company (me) didn’t have to pay for the drug. All we had to pay for is the administration of the drug. That’s a huge consideration.
We talked about CLL not being the most common cancer. We talked about medical research being expensive. Being able to pay for the medicine is a really important consideration. Sometimes a clinical trial is a great way to sidestep a huge chunk of that expense.
Jeff adopted Leuk, who helps keep him company.
What is the human experience of a clinical trial?
I thought it was going to be very lab ratty, even though I knew up [in my head] that I wasn’t going to be one. In [my heart] I was still scared. I did everything in what’s called the Ambulatory Treatment Center at Anderson. I would show up on a very regular basis in a room that was slightly larger than my walk-in closet and get plugged in. I would get my IV going, and we’d get all the pre-meds and all that stuff.
The first time around was a harrowing experience because they kind of couched what would happen. They said, “You should expect your first treatment to go about 8 hours, because your body has to get used to this stuff. There’s going to be some adverse reactions. When those happen, we have to stop what we’re doing, treat your reaction and then start all over again.”
Yeah, 8 hours turned into like 23, and I exhibited most of the adverse reactions to the treatment that were on the list from all that informed consent. It’s very disturbing to wake up out of a Benadryl-induced stupor to have your wife saying, “You’re a tomato,” and you’re solid red. Now you’ve got spots, and now this, and now that.
All that happened, but they treated me like royalty. At no point did I feel like I was in danger. I was getting the best of care. It got to the point where I could drive myself to the Ambulatory Treatment Center. I could get plugged in by myself. I could get the treatment. I could get the saline flush, and I could drive myself out. It became routine.
Jeff during the clinical trial he was a part of.
I was thinking to myself, “Well, even if this doesn’t work, they’re going to find out what didn’t work. Those are more data points. It’s not hurting me, and I stand a really good chance, according to my doctor, of getting a complete remission. Let’s stick with this.”
I did, and amazingly, I did achieve complete remission. I got the coveted MRD, minimal residual disease negative, for 6.5 years without having to go through traditional chemo. That was, I believe, worth the price of admission.
Reaching remission
Everybody was learning along the way. I’ll circle back to earlier when we talked about me being the compliant patient. Of course, as part of the clinical trial, they said, “Would you mind giving up all these additional tissue and blood samples during the trial so we can check this, that and the other thing?” Of course, I said yes.
Did you know if this was a blinded study?
In this clinical trial, everyone who was participating in the trial was receiving the medicine. They were not receiving standard of care. It was a fairly down-the-line clinical trial. Everybody was going to get the medicine. We need to see how different karyotypes react to the treatment and at what treatment level.
Meaning dose?
Dosage response. Is it a partial remission? Is it a complete remission? Is it MRD negative?
A few minutes ago, I was bragging [about] 6.5 years of MRD negative. I probably am not supposed to know that was one of the best responses in the clinical trial, but it was. And 10 years later, it doesn’t even bear asking why that happened, because we’ve moved past that already. We’ve already got so many cool new drugs.
The folks at Anderson were plotting out that bell curve and going, “Okay, Jeff is trisomy 12 mutated [and] all these combinations. He got 6.5 years. This person was this type; they got 1 year. This person [had] no response at all.”
All that information is important because they were studying a treatment mode that was far less toxic than the standard of care. FCR is a combination of chemotherapy and monoclonal antibodies. What I did was exclusively monoclonal antibodies, because somebody said, “If you’ve got a high expression of this CD20 marker on your cells, this stands a really good chance of knocking that sucker out.” It did for me, so great on the data point.
Editor’s Note: In the clinical trial, Jeff received an IV of ofatumumab.
Reflections
Using humor to deal with cancer
I have this bright red shirt with white letters, and on the front of it, it says, “Sarcasm. It’s how I hug.” My family knows that that is true. If I can’t find something to laugh at, you know things have gone really, really bad. I am going to find something to smile [at]. I am going to find something to laugh at. I am going to find something to dial down the tension. Otherwise, the oppression just gets to be too much.
Sometimes the humor is inappropriate. I will admit that right now. I can remember the word choice that I used when my daughter came into the Ambulatory Treatment Center with a bag full of Chick-Fil-A nuggets. “Honey, you can’t have those here.” That’s the paraphrase. I gave her the full-on of why having the fried chicken smell where people were receiving treatment is not a good idea. I may not have used the best choice of words, but we did laugh. So there’s that.
Making life changes
After I was pronounced MRD negative, complete remission, I was like, “Huh. I got my life back.” I kind of realized there was a quid pro quo that was expected at this point. I had gone through an awful lot. I had done an awful lot.
I’ve got a reset button that got pressed. What am I going to do with it? For the first time in my life, I decided perhaps it’s time to start taking better care of my body. I have been thin and relatively fit for most of my life, despite my family history of heart disease and all that happy stuff.
I started exercising. My wife had been a wonderful care partner throughout my treatment, the diagnosis and everything leading up to MRD negative. But she didn’t take very good care of herself while she was doing this, and she got big. She got very big. For someone who’s 5’4″ and that big, it was not healthy.
I got to MRD negative. I turned around, and (of course, with a bit of sarcasm) I said, “We can only have one health care crisis in this house at a time. Mine’s done. Let’s work on you.” My wife went through a very awesome program at a Houston health care center, and she lost over 75 pounds. She’s kept it off this entire time, but we had to make changes. We made changes in the way we ate and how much we ate.
Going back on watch and wait
Since she was exercising, I started exercising. Being a Type A personality, a little bit OCD, walking around the block once or twice turned into 5Ks, turned into 10Ks, turned into half marathons, turned into a full marathon. It was pretty cool. My mindset was, “I have to do something to make sure that what I got is not squandered.” I did that, and I kept at it.
After a while, I noticed that the fatigue was creeping back in. I noticed that the “allergies” weren’t quite allergies, because there wasn’t any oak pollen in the air. There wasn’t any tree pollen going on. There wasn’t the typical Houston-area mold going on. It was my body going, “Hey, there’s a problem.”
‘Go enjoy all the stuff you need to do to smile. Everything in moderation, including moderation.’
Jeff’s Doctor
I had that appointment at Anderson, and they did the blood work. My doctor came in, and he had that look on his face. I knew what that look meant. My habit of always giving my doctor a bottle of red wine every time he gave me good news was coming to an end, because he was going to tell me that I was in relapse.
Zoe, Jeff’s daughter, wearing her grandma’s wedding rehearsal dress.
I was, and it was okay. I really wasn’t prepared for him to say, “And we’re back in watch and wait,” because that’s exactly what the program was. In my mind, watch and wait was a one-time thing. It wasn’t something that had the potential to be multiple [times].
I was like, “Wait, we’re doing watch and wait again?”
He said, “Your blood work’s not great, but your symptom load’s not horrible. So let’s wait. Let’s see how it progresses.”
Has it been hard to get back into that state of watch and wait?
It’s been easier this time than it was the first time, because I know what this means. I have a different doctor at Anderson because my doctor retired. He was entitled to retire. He’d been doing this for a long time. My new doctor had a wonderful way of explaining watch and wait in a way that I hadn’t heard of before.
He said, “Look. Think of it this way. At MD Anderson, our job is to keep you alive, period. The longer we keep you alive, the more time we have to develop more medicine, better medicine, less toxic medicine. I’ve got some really good stuff in my pocket right now that I can treat you with now, but you don’t really need it now. If we push this out another 6 months, year, 2 years or 3 years, just think of what we’re going to have in store for you.”
I’m good with that. I know what the combination would be if I were to need treatment right now. I also now know some of the candidates for what the treatment might be 6 months from now or a year from now.
Staying healthy while accepting limits
Can I go drop off my briefcase, head out the door and knock out a half marathon right now [while] speed walking? No, I’m going to have to work up to that.
I don’t have as much gas in the tank, but I still speed walk every dang morning. I still do my sit ups. I still even play around with dumbbells. For the love of all that’s holy — my daughters have me eating oatmeal and chia seeds with fruit in the morning. I’m putting in the effort. The oatmeal is not really that bad. It’s just weird. I’m putting in the effort, and I’m still enjoying everything that I do.
Yeah, I’m in watch and wait, but the oppression is not as heavy as it was, because I’ve got an understanding of what’s going on.
Living life with moderation
When I first started seeing the folks in Anderson, I felt the need to do this confessional thing.
“So, Doc, you need to understand, I do enjoy the occasional cigar. I smoke a briar pipe from time to time. Is that going to be a problem?”
“How often do you smoke, Jeff?”
“Couple of times a month.”
“Not worried about that.”
“All right, Doc, you need to understand, every night I have a whiskey or 2.”
Jeff is a whiskey lover and has tried most of the back bar at his local favorite
“Really? What kind of whiskey do you drink?” I had to name it off. He said, “When was the last time you were drunk?”
“1992.”
He said, “I think we’re good.” I opened my mouth again, and he was like, “Stop. I’m not here to make you miserable. I am here to help you live a great life. So go enjoy the whiskey. Go enjoy the bowl of ice cream. Go enjoy all the stuff you need to do to smile. Everything in moderation, including moderation.”
Now, I’m a dozen-plus years into it. I’ll share a little secret with you: I still have that whiskey every night, except it’s a much higher quality whiskey. Because why not? Why not? If I have that whiskey and pretend to watch something on TV, and I have fallen asleep and gone off that cliff at 8:30 in the evening, I don’t care. I’m up at 4:30 in the morning anyway, getting my exercise in. I still got 8 hours of sleep in. Who cares when it happens? Watch and wait’s not fun, but it’s not as horrible as it was the first time around.
What is the biggest takeaway you want people to remember?
I think the most important message that I can deliver to anyone who’s newly diagnosed with CLL is, “Get the right specialist on your team,” because doing that will allow you to get in the mindset of enjoying your life. Being diagnosed with cancer is horrible. It sucks all the air out of the room.
We have learned so much in 12 years about treating CLL. I am not going to shy away from the fact that there are some people who are newly diagnosed with CLL that are not going to have good outcomes. That’s still something that we deal with. But the truth is that for the overwhelming majority of people who’ve been diagnosed with CLL, some of you may never need treatment. And those of you who do need treatment are probably going to have a fantastic response from it and have the opportunity to live a great life.
Since that’s going to happen, from a Type A personality, make a list. What’s all the stuff you want to do? What’s all the good stuff that you want to do? Put it down on paper and keep your promises to yourself. Go live a great life, because it absolutely is possible. The fact that all these medical professionals are now using the C-word (cure)? Cool for us.
When Lynn received his small lymphocytic lymphoma (SLL) diagnosis in 2013, he felt like he had lost his future.
Lynn saw a specialist at MD Anderson for treatment options. He is a strong proponent of seeing a specialist, especially after being a caregiver for his son when he was diagnosed with cancer in 1977.
A decade after diagnosis, Lynn reflects on his first symptoms, treatment and side effects and living life with a glass half-full mindset.
Name: Lynn B.
1st Symptoms:
Prolonged fever
Night sweats
Diagnosis:
Small lymphocytic lymphoma (SLL)
Non-Hodgkin’s lymphoma
Tests for Diagnosis:
X-ray
Chest CT scan
Bone marrow biopsy
Treatment:
Rituxan (rituximab) and Revlimid (lenalidomide) combination for 3 months
Rituxan (rituximab) and Imbruvica (ibrutinib) combination – ongoing
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
SLL 1st Symptoms and Diagnosis
Introduction
Tell me about yourself
I’ve been married to my wife since 1970, so that makes 52 years. She’s a long-suffering lady, and we alternate being caregivers. I couldn’t have done it without her. We had five children and when you have children, you’re a hostage for the rest of your life. Every day she’s got to check on them!
I worked for an electric utility for 40 years. My training was in electrical engineering at a school in South Texas, and that was growth out of my hobby, which was ham radio. This has been an interest of mine for all these years.
In some senses, I was bi-vocational because when I went to work for the electric company, I also was a youth minister, served in several churches, and then later on was a volunteer music minister directing choirs and leading music in a church.
Music is one of my real loves, having grown up singing in choirs, playing a trombone in the band, and picking up the guitar. It should be no surprise that my wife, I love to hear her sing, and her voice has lasted much longer than mine has.
It all started with sitting by her as she waited to be picked up at high school. Of course, I had been trailing her for months, getting up the nerve. I was about to graduate, so I had to make my move. She left her [sheet] music there as we were sitting and visiting. When her dad drove up, she left the music, so I didn’t say a word. Of course, I knew where she lived. After her dad took her home, I followed about 20 minutes behind and handed her the music.
Ham radio
[One] morning I had insomnia about 2:00 a.m. I knew some guys were talking, and I went out into my ham shack and talked to them. First time I’d actually talked to them, but I told them I had been listening to them for 10 years.
I said, “When I was diagnosed with blood cancer, it meant a lot to me to be able to get some normalcy by listening to you guys in the middle of the night when I was lying awake worrying about my disease.”
That meant a lot to me to bring some normalcy into my life. You just longed for that. Your life has changed for forever when you’re diagnosed with cancer. That was my chance to say thank you to those guys that morning.
They said, “Hey, everybody out there, this is Lynn’s first time. Say hi to him.” I was hearing voices and people giving their call signs from different locations. I certainly did feel welcome. I had witnessed their companionship, the type of camaraderie. Anyway, the friendship that they have, their camaraderie.
My wife has put up with it, like they do with hobbies, whether your hobby is radio or fishing or whatever. She’s put up with it. I appreciate that. It’s not all time consuming, but it varies.
Cancer’s impact on who you are
When you’re diagnosed with cancer or you go through a hard time in your life, it can put you in a very dark place. My normal personality is a very optimistic-type person, but I got into a real dark place. It was hard to come out of.
I’ve shared with you that in ’74, our son was diagnosed with cancer, and I lost 20 pounds just within just a short time. People react differently to depression, but I did the same thing when I was diagnosed with cancer.
One of the side effects of this cancer is weight loss, but I think it was as much for me as having that diagnosis hanging over me and not knowing what it meant. That it might mean I have 2 to 3 months left to live or maybe a year or 2 or 3, hoping to be a granddaddy, things like that. It’s a tough time to deal with.
Symptoms and Tests
What were your 1st symptoms in 2013?
I began to run a fever with no known cause, which was not a new thing, but it prolonged. It lasted day after day after day. It went on for a week, and so I said, “Okay, I don’t know what it is, but I want to go see my primary care physician.”
I was having some night sweats along with that, too. I was meticulously keeping the record of the daily temperature. I actually saw the nurse practitioner, but he had a lot of experience and he said, “Let’s just get a chest X-ray and see where we go from there.”
Then the call came from the doctor’s office after they got the chest X-ray. They said, “He also now wants you to go get a CAT scan.” The alarm bells went off then. I said, “What did they see on the X-ray? Something’s going on here.”
Anyway, I went and got the PET scan. Then I had the appointment the next week with him to see what he saw. He said, “It appears that you may have a type of lymphoma. We don’t know, but you need to go see an oncologist.” That’s how things evolved at that point.
Night sweats
I had some night sweats with that. I didn’t know what to think about that. Is this just part of the fever or what? I would find that it would get much worse in the coming months. I found that it would be to the degree where your night clothes were drenched and the sheet underneath you was drenched.
I would sometimes have to get up and change clothes, underclothes and then the spot in the bed would be too wet to lie back down on. Through all that, I didn’t want to wake my wife up. We are in a pretty dry climate out here in West Texas, so things would dry out pretty quickly.
Getting an X-ray, CT scan and bone marrow biopsy
X-rays don’t raise an alarm. You’re just kind of like, “Oh, yeah, I’ve had a lot of X-rays.” But when they said, “We want a chest CAT scan.” Well, I’ve never had a chest CAT scan. Something is going on. I try to compartmentalize that, try to put it off to the side, but it’s there. It’s just nagging and you know something’s not right.
All of a sudden, what life I had left, which I thought was maybe 15 years, shrunk down to maybe just months.
The next week, I went in to get the report from the primary care physician. He said, “I think you’ve got lymphoma.” I went home and told my wife, and she didn’t believe me because I’m always joking and pulling pranks on her and things like that. She didn’t believe me when I went and told her. I had to insist that it was true.
She really stepped up to bat, because I withdrew into my cave. She began to research and print things out off the Internet, and I didn’t want to read them. Of course, I had the upcoming appointment with the oncologist and then the bone marrow biopsy.
When I got there, she said, “We can do a biopsy of your lymph nodes, but they’re all internal, so it’s going to be a little more difficult to get to them. We need to do a bone marrow biopsy and we can assess from that what type of cancer this is.”
The Diagnosis
Receiving the diagnosis
Then when the report came back on that, she said, “This is small lymphocytic lymphoma (SLL), which is akin to chronic lymphocytic leukemia, except this is primarily in the lymph nodes and not detectable at this stage in your blood. What I would recommend is that you be treated with R-CHOP.”
We remember the acronyms from when our son had cancer. We remember the acronyms and that they had meanings, and we recognized some of the drugs that she mentioned that I would be treated with.
I went home with the feeling that my days were numbered. Of course, I’ve always known my days were numbered, but I said, “They’re very short.” I went home with the thought, “I got to go through this.”
Within a day or so, my wife contacted the children, the grown adults, and told them what was going on. She came back and said, “The kids and I want you to go to MD Anderson.”
Processing the diagnosis
I crawled back into my cave and just accepted the fact that I was going to have to go through chemotherapy. My days were numbered. It was a dark place and just almost a resignation that this was the end.
My wife came, and still I had not read any literature. I had not looked on the Internet. I was scared of what I would see. My wife came, and she had printed some things out that I didn’t want to see. She said, “The kids want you to go to MD Anderson.”
With our history with our son having had cancer back in the ’70s, we were familiar with MD Anderson. We knew it was the right place to go. I knew it was the right place to go, but I just felt so lousy. It didn’t feel good, and I didn’t want to make the 400-mile trip.
She stepped up as the caregiver and called MD Anderson and made an appointment. She didn’t even get a referral. She just made an appointment and said, “I got you all lined up. We’re going to go down there, and we’re going to go there in a week-and-a-half.”
It’s one thing when somebody else gets a diagnosis, but when you personally get the diagnosis, in my life the future just disappeared. Even at that age of 66, the dreams I had of being a granddad and what was to come and things to enjoy since I was newly retired — those all vanished.
All of a sudden, what life I had left, which I thought was maybe 15 years, shrunk down to maybe just months. I didn’t know. I certainly knew I didn’t feel good, and something was wrong. The doctors were right. I did not feel well.
Did you feel like you were losing things you had been looking forward to?
Yeah. We had retired where I was working in West Texas, out in the country on 6 acres. There was an extensive area to mow, but there were things we were involved in.
We were involved with our church, and we were joining with an acoustic group of musicians singing at the rest home. I was enjoying getting to take my guitar, and there were dulcimers, violins, other banjos and other kinds of instruments.
He said that we can’t cure this disease, but we can manage it. All of a sudden, the glass for me was half full again.
All of a sudden you’re sick, and you need to stay away from people. When I saw people, I was not one who held it back or didn’t share my diagnosis. I shared that with other people. All of a sudden, it’s like you’re marked, and I felt marked.
I felt like, “I’m here, and I just want to tell you that I’ve got this diagnosis of small lymphocytic lymphoma.” Of course, nobody knew what that was. It is a rare disease, just like its counterpart CLL. They’re rare diseases.
Can you describe what you meant by feeling “marked”?
We’ve all been through that in our life where somebody we knew was diagnosed with a terminal disease. You have different reactions. When you hear that, you don’t know how to respond to that person or to their family. Sometimes you’re asking their family members, “How are they doing?” because you’re uncomfortable asking that person how they’re doing.
We’ve seen through life experiences that some people withdraw from you. Some people that have been friends don’t know how to cope with it, so they pull back. I was pulling back, too. It was a difficult time.
Processing what it means to live with chronic cancer
I finally saw the specialist at MD Anderson, and the phrase that he said to me brought hope back in my life. He said that we can’t cure this disease, but we can manage it. All of a sudden, the glass for me was half full again. It was not half empty. I found that to bring hope to my life.
On that trip we made to MD Anderson, I decided to start looking for things that were humorous again and find things to laugh about. As I stood there in the medical clinic at MD Anderson and I looked at the list of doctors, I began to laugh. One of the doctor’s names was Dr. Fanale. He was not my doctor, but that was one of the doctors.
The doctor at the top of the list, the one in charge, was Dr. Kwak. I had to take a picture of that and post it on my Facebook page to let folks know that I was finding things to laugh about again.
We stopped and ate at a restaurant. Of course, camo or camouflage-type dress is common in Texas, and I looked over there and saw these folks with camouflage. It made me think of the TV show about the guys in Louisiana that sell the duck calls. I thought about them. Things like that were bringing humor back to my life.
Can you explain the power of your doctor saying you could manage the cancer?
I think I was thinking he was going to say, “We can just buy you some time.” But he turned it in a positive way to say that we can manage it.
I did not have any comprehension of the research that was going on that was going to begin to explode in the treatment of CLL and SLL, which certainly has exploded in the last 10 years. It would bring so much hope for people that are diagnosed with those diseases.
To that point, the treatment was going to be chemotherapy. But as we sat down and talked — the doctor and I did, and my wife and son were with me — he said, “Let me just talk to you about some of the treatment options. We’ve got the traditional chemotherapy that we can treat you with, or we can treat you with some novel therapies, targeted therapies.”
We began to see that there were some other options. We were up into the time frame of November, and he was ready to start treatment because I had 70% involvement in my bone marrow, and my blood counts were beginning to drop. The B symptoms, as they say, would be getting worse: losing weight, the fevers and the night sweats.
Treatment and Side Effects
Deciding to Start Treatment
Testing for treatment options
He gave the option to start treatment in December, and I said, “You said that this is a disease that we don’t have to treat right away? We can defer. How about if we start in January? I would like to enjoy Christmas.” That’s the way that took place. We went back to MD Anderson. At this point, we were going to MD Anderson every month.
Now I digress a little bit, but you go from where you’re comfortable, the doctors you’re comfortable with. Here you go to the big city, and you go to the parking garages, and you go to the freeways. All that, to me, was like a maze. As we age, we’re not as capable of negotiating those kind of traffic jams and problems you have.
It’s like a great sigh of relief came when you get the car parked and stop and take a picture of the parking lot number so that you remember where your car is when you get ready to come back to your car.
We were having CAT scans, and I had PET scans, bone marrow biopsies and blood work. I’m sure at some point in there I had an X-ray, and then at some point in there I’m sure I had an EKG. They wanted to be sure that the kind of drugs they were giving me would not interfere with that.
Discussing treatment options
There we were, going to start in January, and we discussed the options. It was chemotherapy or a novel therapy. The doctor said, “We’ve got 2 drugs that have had some benefit for this type of cancer. One of them is Revlimid. The other name for that is lenalidomide. It’s a common treatment for multiple myeloma. The other drug is Rituxan.”
Of course, those didn’t mean much to me. Some folks have a long watch and wait. During that time, they can research and see what the different drugs are and how they interact and so forth.
A pill a day keeps the cancer away.
I was so naive that the Rituxan went in on an IV, so I thought that meant I was actually getting chemo. I didn’t understand that it was a monoclonal antibody, and it was not chemo. I got Rituxan and Revlimid. I was getting the Rituxan IV every week, so we stayed there locally.
We were going back every week to get another infusion, and this stretched out for about a month. Then after that, we were coming monthly for the IV and to get a refill on my pills, which were the Revlimid.
Changing treatment
At the 3-month mark from the time we started, the doctor said it’s time to do a CAT scan and see if this is working. The results came back, and we sat down with him. That was in April of 2014, and he said, “Okay, what we’re seeing is no difference.”
I said, “Well, that’s good, isn’t it? I mean, they haven’t grown.” Here I am, the guy with a glass half full of water.
He said, “No, no, that means we need to try something else.” He said, “There’s a new drug that was just approved by the FDA, but it’s approved for second-line therapy.” I had failed Revlimid and Rituxan, so I was ready for second-line therapy.
We began with again repeating the Rituxan every week (and then stretching it to every month) and taking the ibrutinib every day. That’s how that all started in April of 2014.
That’s right. I’m still taking my daily pill. As I say, a pill a day keeps the cancer away. In some ways, to me, it’s not too much different than the person who’s a diabetic and has to get insulin every day or some other type of chronic disease.
I choose to look at it in a positive way. I know that this may not work forever. I know it’s got some side effects, and we don’t know for sure what the long-term side effects are.
God bless those folks that were in clinical trials, because those pioneers that took this — some of them it worked for them, and for some of them it didn’t. For some of them it’s still working, and they’re at 10 years on this drug. They continue to bring me hope that this will continue to work for me.
In the meantime, I’m on the very first of the BTK inhibitors (ibrutinib), but since then, there have been several other ones that have been developed. There are second generation and third generation ones that have fewer side effects and are easier for people to take. It brings hope for other people.
Besides that, there are other types of treatment that are targeted or novel that are not chemo. They know now that chemo’s probably not the best treatment. Before ibrutinib, the standard of treatment was FCR. That still is the standard and probably is in some other countries. Fortunately, in the U.S., we’re able to move on to other options.
Back in about 2015, I was taking ibrutinib, and I was at a Patient Power conference at MD Anderson. Dr. Michael Keating, who is one of the pioneers of treatment and drugs, was answering questions.
I asked the question, “Since a bone marrow transplant or stem cell transplant is the cure that we would have to lean on if everything else quits working, but at a certain point we get too old to take that, why don’t we just do that up front? Why don’t we get the stem cell transplant up front?”
He said, “Because these other drugs that you’re taking have so much fewer side effects, so much less risk. There’s a lot of risk with a stem cell transplant or bone marrow transplant.”
I was reading the blog of Dr. Brian Koffman, CLL Society, and what his journey was like and what was working for him. He was one of the pioneers of ibrutinib. There was another fellow, Terry, who had a blog going back to year 2000 about the different drugs that he was on even back then. To be able to read those real-life stories, just like you’re creating with these videos, gave me hope.
Being able to take treatment at home instead of going to a clinic
I started well for the first line. I had a pill and the infusion. I didn’t have to go in and get an infusion once we got the infusions behind us. Life was much more normal than it would be with every week or every month having to go in and get IVs. Of course, every time you had to go get an IV, you had to have a blood count to go with it to be sure that your counts were up high enough to proceed with that.
When I started on ibrutinib in April of 2014, I think even my doctor was cautious, too, because all he had to read was the clinical trials from a medical standpoint. But he didn’t know how long it was going to work. I was going back every month to get the infusion. I also was having blood work done.
Of course, that led us to that 3-month point when the CAT scans showed that wasn’t working. Even after we proceeded forward with ibrutinib, I was still getting a CAT scan every 3 months. With SLL, the disease was hidden in my body. There were no swollen lymph nodes on my neck to observe. It was lymph nodes that were internal, so the CAT scan gave an option to see what was going on.
They would look at the CAT scan and compare it to the previous one to see if anything was changing. Did the lymph nodes decrease in size? And once they had, were they staying at that point? Thankfully, I only have to get that CAT scan once a year now.
Side effects of treatment
If you’re on Facebook with a CLL group on there, you’ll see people talking about the side effects that they’re having. I had a lot of those. I had the achy joints. I had the sore muscles.
At one point, my knee hurt so bad I thought that I was going to have to have a knee transplant. I said, “Let’s hang in there. It’s probably just a side effect.” Any time I stood up or anything, it just hurt. I had that happen a couple of times, but thankfully, that pain would just vanish after about 3 days. Then the next day it was almost like a memory. If I didn’t remember it, I didn’t even know it had happened.
Then after some period of time, I began to notice my nails were splitting. I had to be careful when I was prying anything with my fingernails [so I didn’t] pull a nail loose or split a nail. Then I began to keep my nails much shorter and to file them if they got rough edges and things like that. That’s still an issue.
My hair was so straight and normal in my perspective, but it became frizzy and wild. My wife just finally said, “Just cut it all off.” That’s what we did. There’s some hair up there, but not a whole lot of it.
If I had it growing out, I would look like Albert Einstein. I would look like those pictures of him where he had the wild and crazy hair. That’s kind of how it evolved.
Having those side effects, you find yourself comparing with other people through the different forums and encouraging other people. For some folks, the side effects are so overwhelming they just can’t go on. They have to change to a different treatment.
The first dangerous side effect that I had was picked up at the 3-month point. When I went in for blood work, my neutrophils were down, I think around 600 or so. The neutrophils are like the number one fighter in your immune system.
I’ve got a friend right now over in England that’s in the hospital. The neutrophils can get low enough that if you’re running a fever, you can become septic really quick. You have to be really careful.
Fortunately for me, the doctor said, “Okay, we’ve got something we’ll try with this. We’re going to give you a Neupogen injection.” Oh, boy, here’s another shot. As a cancer patient, you’ve been stuck every which way but loose.
I said, “Well, here’s another one.”
He said, “This one goes in your stomach. It’s just subcutaneous. It doesn’t go very deep, and it’s a little bitty needle, so just a little sting.”
It was easy enough that they gave me one there, and then my wife was able to give me the next 2. By then my neutrophils were beginning to climb back up, so fortunately I was able to rebound.
But some folks don’t. Some folks have a harder time with that, so some folks have to have infusions if their platelets or various blood components get too low. You just have to be careful when neutrophils get low. You have to be careful about being around people. You have to be careful about eating food that hadn’t been cooked.
That was just another one of the side effects that you have. Some folks have rashes. I have some rashes, but I don’t know if they’re caused by the SLL, if they’re caused by the treatment I’m on, or if they’re caused by something else.
Continuing to Monitor
Regular blood work
I realize that with the treatment I’m on, the cancer is not gone. I still have some of the side effects of the cancer. I still have night sweats every once in a while. They’re not really bad.
They looked at my blood at MD Anderson. They said that I have 1.6 cancer cells in a flow cytometry test. That’s like 1.6 in 10,000, so that means it’s still there. You take me off of the ibrutinib, and it’ll come back. You just keep on taking that pill a day.
I get blood work done twice a year at MD Anderson on a 6-month interval, but my doctor has asked that I also get intermediate blood work done at the 3-month and the 9-month marks. I do that through my local primary care physician.
Other issues to monitor
You did bring up the kidney cyst, and he referred me to a pulmonologist there, who reviewed the CAT scan and so forth. They said I could follow that locally, so I see a urologist once a year here and take them the CAT scan.
With the pulmonary issue, something new has come up in the last 4 years. They solved it back in 2013 on those early CAT scans from some issues in the lungs. I’m a non-smoker. As it moved forward, the pulmonologist told me that it’s idiopathic, which means they don’t know what caused it. Idiopathic pulmonary fibrosis.
Anyway, we just track that. I hope it doesn’t take me out eventually, but you just go with what you got. Of course, that’s one of those things I went back to the doctor at MD Anderson and said, “Is there anything in the side effects of this drug that would point to this being the cause of this?” That’s, I think, the question anybody would ask. I would look on the Internet and try to see if I could find anything in my layman’s understanding that would point to that.
I do that usually every year before or every 6 months before I go back to MD Anderson and see if there’s anything there that we need to talk about. I realize he’s got a plate full of patients besides me. You’ve got to ring your own bell when you’re there and bring up the questions you have.
Are your kidney cysts and pulmonary fibrosis related to your SLL?
No, it’s not. Apparently the kidney system is not that uncommon, according to the urologist. Even my cancer doctor said that any issues from that cyst will not bother me in my lifetime.
Of course, then if you look at that from a negative way, what does he mean by “my lifetime”? Does he know something I don’t know? There’s always a comment on that report every time I have it done. It’s happening in both areas.
Self-advocacy
Certainly, your doctor is the medical expert. You really need a doctor that can explain to you in your understanding what’s going on. There are things that concern us. If you and your doctor differ about the route you’re going to go in the treatment… For some folks, you change doctors.
I have not been to that point. I’m comfortable with my doctor. He’s probably in his late 60s now, so I know he’s got a lot of experience in treating different cancers. As a specialist, he treats more SLL patients than anybody else I might go to in the Southwest, so I trust his judgment.
Like you say, with new drugs, there are new side effects and issues you’re dealing with.
I’ll just backtrack here a little bit. We had the experience with our son that when you had a side effect or you had an issue, your local doctors would say something. When we got to MD Anderson to review what we had heard, we found out that they were the experts. They understood what was going on in a much better way than our local doctors. I believe that’s still true today, just by the fact that your doctor is a specialist.
Usually in those areas, some type of teaching facility like MD Anderson, they treat a much greater number of patients.
They can also question other doctors in their facility that are treating similar patients to see, “Are you seeing this?” In my case, a pulmonologist referred me to a pulmonologist there locally at MD Anderson that I could talk to about what was going on. She was used to dealing with cancer patients and the issues they had related to your lungs.
Being a Caregiver and Lessons Learned
Lynn’s Experience as a Caregiver
Seeing a specialist
We certainly became advocates for anybody that had cancer to go see a specialist. If there’s any hope, it’s going to be from a specialist. Not only because of their knowledge, but they’ll know what the latest treatments are. Often, a doctor in a remote area may not be up to date on what has evolved in the last 6 months or 12 months.
There are doctors that meet at these national and international conferences, and then they review the results of the clinical trials and what they’re seeing. From our perspective with our own son, we would definitely encourage anybody dealing with any kind of disease to go to where the specialists are.
At one point, my doctor at MD Anderson said, “You seem to be doing well. If you want to go back in the care of a local oncologist, you can.”
I said, “No, I want to stay with you.” We laughed about it later, but I said, “We’re not dealing with a common cold.” To be fair about it, it probably wouldn’t be a bad idea for me to have a local oncologist in a supporting role. [I would] still let the doctor in Indiana be the driving force. I think that’s probably a wise thing. I haven’t done it, but as you get older, it’s harder for you to travel distances.
As time has gone by, I’m aware of some other doctors. There’s a Dr. Awan over at the Southwest Medical Center in Dallas who is well thought of, so that would be an option for me. At MD Anderson, there are probably a half dozen or more doctors there that if my doctor decided to retire, they could just step in and pick up without skipping a beat.
Lynn’s son’s 1st symptoms
He was 3.5 years old, and we were with some friends at the swimming party. We noticed that his stomach was very swollen like a malnourished child. We said, “What is going on?”
We went to his pediatrician the following Monday. Of course, the doctor was very wise and an older doctor. He knew this was a bad thing. That went from there to him being in the hospital locally there, where we lived in Corpus Christi. He was there for a week. They were running various tests.
There were no CAT scans back then, so it was just blood work — maybe some type of a sonogram or something like that, but no CAT scans. Finally, the doctor, his pediatrician, told those doctors, “You’ve got to step up. This kid is getting worse and worse.”
The diagnosis
At that point, they did an exploratory surgery, opened up his abdomen and found a massive tumor in there. They took biopsies and so forth and then gave us the name of a local oncologist. We said, “We want to go to MD Anderson.”
When we finally got to MD Anderson, for some reason — we don’t know why — the biopsies were not usable. That’s why “undifferentiated” was the diagnosis. The doctor at MD Anderson said, “We hope this might be a Burkitt’s tumor,” which was that tumor found in children in Africa.
Anyway, it never was for sure what that was. He went through treatment and went through a relapse. We had him for 28 more years, and we were so blessed to have him for those 28 more years.
The cancer in the end did not come back. Actually, he passed away because of the damage of one of the drugs. He was like 3.5 years old. One of the drugs damaged his lungs and eventually his heart.
Advice of seeing specialists as a caregiver for any diagnosis
Even to this day, to somebody who has a child with some type of cancer, we would say go to MD Anderson if you can, or go to UT Southwestern. Go to one of the places where they have the experts. You can keep your doctor locally as a part of your team.
We went through this with my brother-in-law. He was diagnosed with pancreatic cancer, and we said, “We’ll take you. We’ll take you to MD Anderson if you’d like to go.” We did make several trips with him, and it’s a very difficult cancer to treat. He lasted 9 months. You got to try. You’ve got to look at all your options.
Emotional and mental impact of being a caregiver and then being the patient
When the cancer diagnosis comes, I think we all look at it from our own perspective. We look backwards at people we’ve known, and so often, people that we’ve lost, people that passed away from cancer.
I knew there was hope with some types of cancer. I knew that they were beginning to cure some types. When I heard that word, “lymphoma,” it was like the word “leukemia,” a very scary word.
So many other folks that get that diagnosis look at it all of a sudden as the person that has it, whereas before they were looking at other people that had it. They remember that experience, what happened, and what worked or didn’t work. It’s a tough time when that diagnosis comes for you.
Reflections
Looking on the bright side
Even with an SLL diagnosis, if the doctor were to say at my next visit in August, “Okay, you’re beginning to relapse. We’re going to have to start looking at other options,” I must say that that would be a disappointment. It would be a downer.
I think after kind of having a little pity party, I would begin to also to look at the bright side. There are other treatments that have a lot of promise. Newer drugs have been developed. There are drugs that are being given in combination that, for some folks, are at least getting them so deep in remission that the disease is not detectable, and it’s questionable whether it will ever come back.
Then there’s CAR T that Dr. Brian Koffman had, and Deborah Sims down in Australia had that as well. Both are doing very well. It’s not always a cure, not always even a remission, but still there are options. You take them as they come.
Benefit of watch and wait
One of the things I know a lot of people worry about with watch and wait is that the time is going by. But this particular disease (a chronic cancer or lymphoma), it just depends how you’re feeling at that time, what your blood counts are doing, and what other risk you have, because they often will watch and wait.
Each year that goes by means newer drugs are being developed and new clinical trials are progressing. That means if you’re not being treated today, but your treatment’s another year or 2, 3, 4 or 5 down the road, there may be new treatments or new combinations that were not even thought about when you were diagnosed.
Even for me, ibrutinib has bought me 8 years. There are other drugs that have come along and have been proven to be helpful, like venetoclax, that would be an option for me at that point.
Have you thought about getting to the point of undetectable minimal residual disease?
Yes. I have looked at the other options and have questioned the doctors about it. We’ve also even had a clinical trial nurse from MD Anderson join us on one of the CLL Society monthly calls and talked about the clinical trials that might be an option to add another drug to (in my case) ibrutinib.
One of the things that all of us eventually bring into this mix is our comorbidities. I mentioned that the issue of the pulmonary fibrosis makes it perhaps difficult to qualify for a clinical trial.
Another issue I have is I’m on a blood thinner because I’ve developed blood clots. Before I was diagnosed with cancer, I had 2 occasions where I had blood clots, and I found out that I’ve got a genetic issue with my blood that makes it more likely that this could happen. It’s not really common.
Anyway, those 2 things (the lungs and on a blood thinner) would make it more difficult for me to be approved for an additional drug. My doctor kind of took a risk, and I did, too, when he put me on ibrutinib back in 2014.
A lot of those patients would not be put on ibrutinib if they on a blood thinner because one of the side effects of ibrutinib is bleeding in the brain, subdural hematoma. I’ve told my wife, “If I fall and hit my head, no matter what I say, put me in the car and take me to the emergency room. I need to have a CAT scan.” Bleeding like that could certainly happen even if I wasn’t on ibrutinib.
What advice do you have for other people in your situation?
I would say certainly be open to go to a specialist, because it made the difference for me in getting the latest treatment that was available. If I had stayed here, the doctor was going to give me R-CHOP, which is not the right treatment at all. You won’t find that as a treatment.
My doctor at MD Anderson said that hasn’t been given for years. By being at MD Anderson, I was at the right place to begin on the drug of ibrutinib. Now they know that ibrutinib outperforms FCR, which was the long-time gold standard for this type of cancer. For some folks, it appears to have been a cure on the FCR. Anyway, I would say that it’s important to get to a specialist.
Things will get brighter.
Finding a community
I think the other thing I would say is, “Find yourself a community of other people dealing with cancer.” You can find groups on Facebook. I have a group that I joined, Blood Cancer Uncensored, on a weekly conference call. We’re friends that get together and talk for about an hour and a half when we can make it. It just warms my heart to be able to talk to people and to be concerned with others about the things they’re dealing with. We have not only CLL or SLL; we have other types of cancer.
Likewise, CLL Society, I join with a group out of the Dallas-Fort Worth area on a monthly basis. We talk about people and give an update on what’s going on with their cancer. If you want to talk, you can talk. I don’t want to really say anything. You can do that as well.
I’ve also joined with another group called AnCan, headed up Michele Nadeem-Baker. It’s a good group. It’s give and take, and lots of times folks will say, “Let me give you an Internet link that you might want to follow. There’s a study here that might be of interest to you.”
I like to try to help people find a doctor. It’s one thing to say, “I recommend a specialist.” Well, where would I find a specialist? You can go on the CLL Society website, and they’ve got a list of doctors there by the states that are specialists in this area. Likewise, [you can look for] whatever type of cancer you might be dealing with.
The specialists are going to be at the university teaching facilities. That’s also going to be the place where you can get research. The community doctor cannot put you on a clinical trial, because it’s not available through that location.
You’ll need to go to the specialist to see what trials might be available. I would encourage you to. You may have a pity party. Things may be dark. But I really think that when you get to talk to a specialist, things will get brighter
She was put on watch and wait for a decade before starting treatment due to worsening symptoms. These included fatigue, dizziness, infections and ocular disease. Leesa was put on ibrutinib and later switched to zanubrutinib.
Now, 14 years after diagnosis, Leesa reflects on her journey and making the most of the time she has.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Chronic Lymphocytic Leukemia Diagnosis
Introduction
Tell me about yourself
I like doing puzzles. I like animals, especially cats. I’m married. I live in California and have been retired about 7 years now. I love to travel, although that has been curtailed. Mostly long trips, but I’ve done a few short things. I love my lunch dates with my girlfriends, and that’s me.
I have 4 cats. They’re all seniors, so Dancer and Delilah are 17, and Sammy and Bella are turning 14 on Thursday.
It was really a fantastic distraction for me. You need something bright in your life, and I feel like they were sent to me to help me.
Leesa had Dancer and Delilah prior to diagnosis, and she got Sammy and Bella around the time of diagnosis.
The CLL Diagnosis
You didn’t really have symptoms, so how did the testing and diagnosis process begin in 2008?
I switched insurance, and I decided I’ll have a physical since with this insurance, that’s covered. When my results came back, my doctor said, “Your white blood count is high. Have you been feeling sick?”
I said, “No, I feel great.”
She said, “Then retest in a few weeks,” and I tested again. She said, “Your white blood count is high again. I’m referring your case to a hematologist-oncologist.”
It just floored me. My husband thought that just must be a mistake. You’re healthy; that can’t be true. More blood tests were done. An appointment with hematologist-oncologists and tests confirmed that it was indeed CLL.
How did you process thinking it might be cancer?
Mostly just shock, and it felt like it was just surreal. This can’t really be happening, and I’m going to die. Those thoughts come in your head. “I’m going to die.”
He’s a hematologist-oncologist, not a CLL specialist. I’m very fortunate in that he’s extremely knowledgeable about CLL.
I had heard of CLL because of my aunt, and she described it. She came from Texas to visit. She described it as, ‘It’s not the kind of cancer that’s going to kill you.’
First off, various types of blood tests. We’ll add all these others on. The other test I had some months later, as I remember, was a bone marrow biopsy, which he was trying to do in his office. I could not tolerate the pain, so that was put off for a time when I could be in a hospital setting and they could give me some sedation. Those were the main tests that I had to get the diagnosis.
[The FISH test revealed it]was trisomy 12 unmutated, which my oncologist said was a moderate progression. It’s not the slowest-growing CLL, and it’s not the fastest-growing. That diagnosis is kind of in the middle.
Processing the CLL diagnosis
Figuring out the path of living with chronic cancer
He told me right away that you’ll be on watch and wait, with having your blood tested about every 3 months and visits with him the same. I think he kind of erred on the side of caution and always has seen me more frequently even than I think some specialists see their patients. That was our course of action.
I had heard of CLL because my aunt, my father’s sister, had CLL, and my dad’s mother, my grandmother, I believe also had CLL. All we knew was she had leukemia, but she lived to be 94 and she was diagnosed late in age. I had heard of CLL because of my aunt, and she described it. She came from Texas to visit. She described it as, “It’s not the kind of cancer that’s going to kill you.”
I never thought I would ever say that I’ve had CLL for 14 years when I was first diagnosed. When I was first diagnosed, I thought I only had a few more years to live.
I think she had actually passed before I was diagnosed, so I couldn’t really give her a call and ask about her experience. But her experience would have been different, because the only drug they had to treat it in 2008 when I was diagnosed was chemo. That’s right when the BTK inhibitors and other drugs were coming out.
She had told me that she was not going to do chemo, and that was her only option at the time. Now, we also know that for people who are unmutated like me, chemo doesn’t work for them very long. It has a very short duration, so I’m really grateful that all these new drugs are available for me.
Processing the CLL diagnosis and breaking the news
I told my husband, and he was just as shocked as me. He cried. I did not tell my father, who was in his late eighties and had mild dementia. I knew that he did not process bad information well, so I chose not to talk to him about it, which is very difficult. You want to be able to share with your [family].
I didn’t have my mother anymore, and I really wanted to share with him, but I knew that for me and for him, that was the best thing to do. I told my good friends. It’s difficult for people to understand this type of cancer and the whole watch and wait thing. My friends were extremely supportive.
A lot of ways it was a blessing, because it taught me, ‘Do not put these fun things off. Do it all now.’
I’ll just say that for the first 6 or 8 months, I really felt like I was just in a complete fog, just going through the motions of life. I’m usually a pretty positive person, but it just knocked me over, and it took me a really long time to wrap my head around it.
Now it’s just part of my life, 14 years later. I never thought I would ever say that I’ve had CLL for 14 years when I was first diagnosed. When I was first diagnosed, I thought I only had a few more years to live.
A lot of ways it was a blessing, because it taught me, “Do not put these fun things off. Do it all now.” There was a trip my best friend asked me to go on with her sister and a friend to the beach, a very expensive place on the beach with massages included and expensive dinners.
I had just bought a new house with my new husband. I’d be like, “That’s just an extravagant, expensive weekend. I can’t do that.” The diagnosis made me say, “I’m going, I can do it. It’s not really that big of a deal.”
There were a lot of moments like that, but that one really stands out in my mind. You just have to put it behind you and enjoy all the days. It’s just something that switches within your own brain.
What support is important from people in your life?
I think you’ll find out pretty early on who’s able to kind of understand it and be supportive to you, and who’s not. Sadly, it doesn’t mean they’re a bad person or anything. They might want to try to sell you this product that they sell. “This is amazing, and it’s going to get rid of your cancer.” They might say, “You should go on this kind of diet,” or that kind of thing. The people who just don’t understand say, “Well, my aunt had it, and she lived to be 90,” or that kind of thing.
You find your people, and they might surprise you who they are and who they aren’t. You just need a couple of supportive people in your life, even one supportive friend or family member, and you go to them.
My oncologist said, “You probably have had this for a while. See if you can pull some records.” I contacted my doctor’s office, and they faxed the information to me. I’m like, “Wow, he’s right. There it is.”
I had been living with it for at least 3 years, and I suspect a couple of years before that, based on just a couple little minor changes. I started bruising very easily in my early 40s. When my husband first met me, he said, “You’re like a banana,” because I always had maybe about 20 bruises on my legs at any given time. I had to hold my shopping bags out to the side because if they touched my leg, I would bruise.
In retrospect, I should have known, but I was just like, “That’s just me. I’ve been like this for a while.” But it’s definitely a sign.
How do you feel knowing it could have been caught earlier?
When I wracked my brain thinking back to that time, after I got my records, I had this vague memory of the nurse before my surgery — who saw my labs — asking me if I had been sick. That’s a common sign. When your white blood count is high, you’re sick or have an infection.
I said, “No,” and she said, “When your surgery is all said and done and you’re feeling better, you should actually have that checked out or redo your labs.” I totally forgot it, having gone through surgery and recovery for 6 weeks.
I wonder why [my doctor that I really liked] didn’t point it out to me and remind me, because I continued to see him. That should have been a red flag for him to bring that up 6 months later when I saw him, or even while I saw him during recovery. The nurse [should have] called me for a follow-up. But they were not oncologists, and they’re busy.
Watch & Wait and CLL Symptoms
Being Put on Watch and Wait
Reacting to not needing treatment right away
My first reaction is different than a lot of people. A lot of people want it fixed right now, but not me. I’m like, “Oh, thank God, I don’t have to do chemo right now. Watch and wait? I can do that.” That’s how I felt about it.
I realized I didn’t know I felt so bad until I started feeling better.
I just saw him about every 3 months, had my labs done, had a CT scan to get a baseline on swelling of my lymph nodes and other organs that might be affected. That’s fine with me. I want to be on watch and wait for the rest of my life. I never want treatment. That was my thought. Treatment was horrible. That was my thought. But it’s really not.
Did your aunt having CLL make watch and wait less foreign to you?
I did understand that there was this period where it wasn’t going to take her life right away, and she was just living with it, and she was tired. That’s what I knew. She was in another state.
What’s your advice for dealing with watch and wait?
Just try to relax, enjoy it, learn what you can about CLL from reliable sources. Support groups are fantastic. It can be scary, too, in a support group, hearing other people’s stories. I sometimes even felt some guilt because people were so sick.
Here I was working full-time, taking care of my elderly dad’s needs, having fun, living a completely normal life. Granted, when I look back — especially as it neared my 10-year mark when I did need treatment — I was really so sick. When I finally started treatment, I realized how many times I felt so horrible and how much better I felt once I did start treatment.
I had gotten used to feeling bad, used to having these flu-like symptoms, with no clue why and just kind of still carrying on with life the best I could — working, doing everything around the house, living normally within those bounds.
Once I started treatment, of course there are side effects and I had them, but I felt so much better. I realized I didn’t know I felt so bad until I started feeling better.
Worsening Symptoms
Symptoms from November 2015 to December 2017
Dizziness, headaches, nausea, pain on the head, tooth pain that was an infected tooth, pneumonia more than once, bronchitis, sinus infection, pain throughout body, including muscle pain, some arthritis, then at the end of it, vertigo and near blindness in left eye.
I don’t know how I did it. I don’t know how I did it, but you just do. You realize how strong you are when you don’t think you are, and I hope to not have to do that again.
How did you juggle all the doctor’s appointments?
It was difficult. In 2016, the company I was working for closed in the spring, and that coincided with my health just taking a turn for the worst. Thankfully, I was not working. There was one week that I had 7 doctor appointments, but they weren’t all for me. I believe 5 were for me, 1 or 2 were for my dad, and I had to take the cat to the vet.
My whole week was consumed with doctor appointments. I was retired before my husband, and he would say, “What do you do all day? Don’t you get bored? Do you get bored?” “Never.” It was a busy time with appointments and sickness.
Ocular Disease
How did it start?
Especially at the end, I would say those last couple of years, my oncologist had mentioned several times, “I think it’s about time starting treatment.” I was kind of digging my heels in. I was supposed to start in the fall, and I said, “I want to wait until after Christmas.” I kind of wish I didn’t, because that’s when my whole eye thing started.
It was after Christmas. It was actually December 28th. I was in a restaurant, waiting for my friend to have lunch. I was very early because I had been at some kind of doctor appointment.
I’m waiting at the table, looking towards the door for when she comes in so I can wave and flag her to the table, and it was blurry. I kept taking my glasses off and looking at them, then putting them on and looking at the door. I just wasn’t seeing clearly. My friend came. We had lunch.
The next day, it was worse. I think on the 30th, my husband and I went for a walk, and I had on sunglasses. I did the same thing, kept taking them on and off. “What’s wrong with these?” Holding them up, I told my husband, “It feels like I’m like blind in my left eye or going blind.”
‘Nothing we can do, or anybody can do.’ If you don’t get answers or you don’t like the answers from one doctor, go to another one. Don’t just take their word for it.
Seeing the doctor
He goes, “Well, you better go to the eye doctor.” Here it is, the end of December [around] New Year’s. There were not a lot of doctors working. I was able to get in January 2nd, and the eye doctor confirmed that I had swelling and such in my eye.
That doctor said, “There’s really not a lot I can do or anybody can do. Just follow up with your regular eye doctor in a few weeks.” I don’t remember if it was that doctor or a different doctor that also ordered an MRI. I did have an MRI.
This was all happening so fast that my vision was changing daily for the worse. I made a follow-up with my doctor, and they were like, “You can’t get in for a week.” I’m like, “No, no, no, I have to get in.” I did get in, and that eye doctor didn’t say, “There’s nothing you can do.” That eye doctor said, “If it were my eye, I would see a retina specialist as soon as possible.” He gave me the information.
What did it feel like being told no one could do anything?
“Nothing we can do, or anybody can do.” This is something people should take away from this. If you don’t get answers or you don’t like the answers from one doctor, go to another one. Don’t just take their word for it. They’re a trained professional with a degree on the wall. No. Speak out for yourself.
Thankfully, that second doctor right away was very concerned. He said, “If it were me, I would see a retina specialist ASAP,” because there wasn’t anything he could do. Only a specialist could work with me. It was within a couple of days, and again I was on the phone saying, “No, I can’t wait a week or 3 weeks or whatever it was. I need to get in now.”
My husband had to drive me, and it was about a half an hour away. [They] dilated my eyes. He did the test and showed me my eye on a graph on his computer with all the swelling and damage and ridges. He said that he suggested eye injections. I believe it’s a type of chemo medication.
Nobody wants to hear “eye injections,” but when you are going blind, you’re like, “Bring it on. Give me that injection. Start it now.” It wasn’t pleasant, but it certainly wasn’t the worst thing in the world. I ended up seeing him every few weeks and always had to have a driver because I really couldn’t even see after.
I’d get a headache. I’d be walking out holding on to my husband, really in rough shape. [I’d use] the hat and the magazine to block the sun in the car all the way home. Sometimes he’d hit a blood spot, and it would be bright, bloody red. My husband said, “You look like a demon in that eye.”
What was the eye injection process?
They put the numbing drops in. I think he might have done a numbing injection, too, before he put the medicine in. The needles are very small, and it’s not that painful. What hurt me the most was once the medicine was in there, it was stinging. It would give me a headache and stinging — the stinging for a half an hour afterwards, and headache for an hour or so. Not horrible that you couldn’t tolerate.
[I got the injection] every few weeks. Again, this was the beginning of 2018 when that happened. Every few weeks turned into like, “From 4 weeks, let’s go 6 weeks. See you in 6 weeks. Okay, let’s go 8 weeks, and then every 3 months.”
Now I am on a yearly schedule. I only had the eye injections about the first 2 years, and I haven’t had one for a while. He’s just monitoring to make sure everything’s okay.
Vision improvement
The injections stopped, and my vision improved. At my lowest point, I had less than 10% vision. If I covered my good eye, I really couldn’t see anything.
I remember being in the retina specialist’s office looking at the eye chart, and they put the big E up on the board, and it had a lighted background. The way my vision was affected, the square box that the E was on was just a squiggly shape, more like an oval that was misshapen. The E looked nothing like an E. It looked more like a snake.
It went from that, less than 10% vision, to slowly improving to the best it’s going to get, which I think is about 60 or 70% vision. It cannot be corrected with anything like [special contact lenses].
Continuing to monitor
I’m just on a monitor situation. I saw a regular eye doctor recently for new glasses, and she said something that I really liked, too. [It] was, “Protect your good eye. Wear glasses when you’re gardening. If something starts coming at you, that gives you a little protection. Wear sunglasses in the sun. Wear a hat. Protect that good eye.”
CLL Treatment and Side Effects
Starting Treatment after Watch & Wait
Monthly IVIG infusions starting in December 2015
My oncologist brought it up because I started getting a lot of infections. After I had pneumonia, he said, “I want you to have IVIG.” A lot of people say it makes them feel better afterwards. I never noticed any difference in the way I felt. I know I didn’t feel great for about 2 days, I think because of the pre-meds, which are a Benadryl drip. You’re kind of high as a kite in the hospital the day you’re getting your infusion.
A lot of people sleep. I couldn’t really sleep, but I would just be lazy in my chair, looking at my iPad, watching some mindless TV program or something like that. It did help lessen the frequency of infections, although I did continue to have infections here and there. What really stopped infections for me was starting ibrutinib.
Deciding to start treatment for CLL
He was ready before I was. He had mentioned it, kind of like easing me into it. He definitely felt my hesitance to start any kind of treatment. I probably should have started it in the fall when he wanted me to, but it was definitely a shared decision.
I often wonder, “Would my eye issue not have happened if I had started?” But maybe it would have anyway. I do think that starting the ibrutinib probably helped my eye as well.
I just felt I’ve put this off as long as I can, and you just have to go with it now.
Discussing frequency, administration and side effects of treatment options
At that time, there were no clinical trials that Kaiser had. He had told me during my watch and wait that if a clinical trial became available, that was my best option. He would think that I should take that.
I didn’t know I was so sick until I started feeling better.
Fortunately, by the time I did need treatment, my options were chemo or ibrutinib. Kaiser does have a leukemia specialist. My doctor made an appointment with him for me, and he discussed treatment as well. He said, “You could do either, but being you’re unmutated, I would suggest you do ibrutinib because chemo doesn’t work as well for unmutated.”
When I had that discussion with my regular hematologist-oncologist, we went for the ibrutinib. I was just ready. I knew I had put it off far too long, and I had several months there at the end to just prepare. This is what I’m doing. It’s time.
Taking ibrutinib and side effects
It was 3 pills a day to start with. That’s the standard dose for everybody. After 8 months, my dose was reduced to 2 capsules a day. It was some years back, but what I remember of that time, I felt very tired.
One of the things that started happening within about 2 weeks — it seemed like it was a couple of days, but I think it was a couple of weeks — I started getting joint pain and swelling, and that is one of the major side effects.
During that initial beginning time while my body was adjusting, sometimes I would be freezing cold, and I always run hot. I was just freezing cold and could not warm up.
I remember putting on a really warm jacket and going in my backyard on a sunny day. I was just laying on this lounger and [enjoying] how good the sun felt, just warming me up with that warm jacket. I would get those chill spells a few times, and then that eventually went away. I would say about the first month or two was when my body was really adjusting to it.
Right away, my labs shot through the roof in the beginning, but they started coming down so quickly. It really started working very quickly, and all those bad things started going away. I had developed migraines in the months before treatment that I never had in my life. They went away.
That flu feeling that I would get about every 3 months for 2 days, that only happened maybe once a year or not at all. All those kinds of things went away really quickly after starting treatment. I’ve only had one infection since starting treatment, and it was within the first month.
That was definitely the time when I said, “I didn’t know I was so sick until I started feeling better.” Although the side effects did kick in very quickly, everything else went away. The side effect kicked in. In spite of that, I still felt better.
Treatment Side Effects
Treatment side effects and low-purine diet
The reason it causes joint pain, as I understand it, is because your body is sloughing off the cancer cells. It raises your purine levels. They call it gout. I’m not sure if it was gout or if it was just joint pain, but I followed a low-purine diet that did not seem to do any good. But I did that for all those years.
No red meat. Mushrooms are supposed to be bad. Beer’s horrible, which was fine. I don’t really care about beer, but once I could have a beer again, I’m like, “I think I want to have a beer just because I can.”
Turkey is very high in purines. I tried to follow it. Mostly the red meat, turkey, that kind of thing. I don’t think it helped me at all. There’s also drugs you could take — I did not — for gout as a preventative, so people do that. It probably helps them.
When I first started ibrutinib, I asked my oncologist. I had seen that in a support group that a lot of people started Allopurinol (or something like that) along with it. I asked him about it, and he said, “I can prescribe that if you want.”
I said, “Yeah, I don’t want that pain.” I started taking both at the same time, and I started getting the little red bumps — Rickettsia.
My doctor said, “It could be from Allopurinol or the Imbruvica. We don’t know, so why don’t you stop the Allopurinol? If it goes away, then we’ll know that’s what it was.” That’s why I stopped it. It went away. It wasn’t a big deal to me, but I just never went back on it. It has side effects, too. I try to be on the least possible [dose]. I just never doubled back because I was afraid of the side effects from that.
What worked for side effects?
Next thing, and the next thing. Pretty soon, on top of ibrutinib, you’re going to be taking 5 other pills. I just chose not to. What did help me? Hot baths. If it was just a hand, soaking my hand or a finger or wrist in a tub of super hot water and Epsom salts. That was really helpful. I tried every cream under the sun: CBD cream, arthritis cream. None of it worked.
What finally did help was taking steroids, but that did cause another issue that would need another medication. We finally decided that only on my horrible flares, where the pain had brought me to tears or that I couldn’t walk, that that’s when I would use the steroids. I only use them once a month to keep the other problem at bay and only take them for 3 days.
Did you or your doctor make the decision to go off ibrutinib?
It was his decision. I know that you can’t jump around with your treatment when you’re on a BTK inhibitor. You should kind of stay on that, because if you go to the next treatment, you could eventually run out of options.
I was like, “I can handle this. I’m a trooper.” Looking back, I don’t know how I put up with all the pain that I lived with and disruption to daily life — not being able to use my right hand for 2 days or my left hand or dress myself a couple of times. I don’t know how I lived with it so long, but I just thought, “I’ll just put up with it because I don’t want to run out of options.”
My oncologist suggested changing to zanubrutinib (Brukinsa). I think they were trying to transfer most of their CLL patients who were on that to the new drug. It had fewer side effects with afib and heart issues that are much higher with the first line of treatment, ibrutinib.
Again, I was hesitant to change, even though I had so much pain. He said, “You don’t have to if you don’t want to, but I think you should try it.” So I did, and 2 days after starting, my joint pain went away. I’ve never had joint pain again.
Did Kaiser take care of the insurance and financial side of things?
Note: zanubrutinib was not FDA-approved for CLL treatment when Leesa started it.
It was their idea, and I believe that it is a less expensive medication. Cost-wise for them, I think that was one of the main reasons. The 2 reasons: it’s more cost effective for them, and there are fewer issues with the heart.
Zanubrutinib side effects
I thought that zanubrutinib was my miracle drug, and it was great. I really could forget that I had CLL most of the time, so it was great. Then in March, I started developing GI issues, which is another side effect of this drug. It isn’t really common to develop them months after starting, but that’s when it happened for me.
I wasn’t managing it well for about a month. I was trying to take Pepto and Imodium. I had my regular monthly labs, and my sodium was rather dangerously low. A couple of hours after I did my labs, I got a call from my oncologist’s office asking me a lot of questions. I was told at that time to hold the zanubrutinib. “Drink Pedialyte, Gatorade. Let’s work on the sodium.”
Going to the ER for side effects
I just felt awful. It was bad enough that it drove me to the ER. I had a headache and was really fatigued, like I had the flu. Just the flu-like symptoms. We never could pinpoint exactly what happened, but some people have talked about a withdrawal. I have been on a BTK inhibitor for many years, so I’m thinking that’s why my liver enzymes shot through the roof rapidly.
I had to go have labs every day. I’m really fortunate that there is a clinic 4 miles from my home, and I go there frequently. My husband could see how sick I was, and he said, “Do you want me to drive you?” He drove me down the hill to the clinic. He could see how sick I was.
I ended up being off of zanubrutinib about 3 weeks, and then I started feeling better. I guess my body had adjusted to whatever I was going through. Then I went back on, and now I am managing the GI issues really well with medication. I take 2 Imodium a day with my Brukinsa. They go hand in hand. They’re in my little pillbox together.
Dealing with diarrhea
If I was making a lunch date with you, I tell all my friends this, “Let’s confirm in the morning because I don’t know how I’m going to be.” They are all so sweet and understanding. I don’t have anybody who says, “Well, how can you not know? You felt good last night.” No, my health can change on a dime. They understand that.
It has made it scary to leave the house, because I don’t know how my body’s going to be acting that day, especially in March before I really had a handle on things. Now, right now, I have a really good handle on it. Those fears have gone away, but that was really difficult. It was a difficult time.
Figuring out how to manage side effects and live life
I was just taking one a day, again, kind of fearful of drugs and so afraid I was going to flip and go the opposite. But the next day I wouldn’t, and the next day I wouldn’t. I should have just stepped up to 2 a day then.
It was a conversation with my oncologist after the sodium level and the whole fiasco with my health, that he said, “Take 2 a day. Take as much as you need.” Once I did, that fixed it. A little adjustment in the first week or so, but then it just seems like my body is in a good rhythm right now.
I actually kept a log. Thankfully, I don’t need to do that anymore. I’m like, “I took 2 today, and this is what happened or didn’t happen.” It was pretty quick. Once I started taking 2 a day, I would say within a week and a half, I was back on track.
Reflections
The importance of a good relationship with your doctor and their knowledge of CLL
I hear and see that every day in the support group online. I understand that there are probably way too many oncologists that are not familiar with CLL.
I’m really fortunate — maybe it’s because I live in a large metropolitan area — that my doctor is very familiar. Sure, he probably doesn’t know as much as a CLL specialist, but he’s not in the dark. He’s updated on all the current information, and I’ve always felt like he’s a great partner.
I don’t feel like he’s forcing me to do one thing or another. It’s a conversation. “This is what’s happening. Here are your options. How do you feel?” He’s great at answering every question I’ve ever had.
When I send him an email, I don’t think he’s ever taken longer than 3 hours to get back to me. I have to be careful not to have this question on a weekend that’s not really pressing. I’m like, “I don’t want to bother him on this weekend, because I know he’ll look at it and answer me. I don’t have to know right now.”
The beautiful thing about the Kaiser system is that all of my doctors that I see have access to all of my labs and can see everything going on. Everybody’s on the same page, and they work together pretty well.
What do clinical trials and research mean to you?
It’s huge. I feel like I wouldn’t be here if it weren’t for ibrutinib. I just know that. If there was a clinical trial available, I would jump on it in a heartbeat. It really is the best.
Don’t waste one more precious day of life dwelling on the negative. Try to learn all that you can about it without dwelling on it all day long. Have fun, learn what you can, and just enjoy life.
In 2008, when I was first diagnosed,my doctor said, “You don’t need any treatment now, but I would highly suggest a clinical trial.” I’m like, “What’s that? I don’t want to be a guinea pig.” Absolutely, it is the best thing. Fortunately for me, ibrutinib was available.
After 14 years of successfully living with CLL, what message do you have for other people?
Absolutely the hardest part is wrapping your mind around your diagnosis in the beginning. I like to tell newcomers, “Of course you’re going to feel like this, but do your best to push through as soon as you can.”
Don’t waste one more precious day of life dwelling on the negative. Try to learn all that you can about it without dwelling on it all day long. Have fun, learn what you can, and just enjoy life.
The annual American Society of Clinical Oncology (ASCO) meeting is where top minds in oncology gather every year to share progress and cover the the top cancer treatment and research trends today. The Patient Story spoke with three of the top cancer specialists, covering precision medicine, myeloproliferative neoplasms (MPNs) and chronic lymphocytic leukemia (CLL) studies.
There are 35,000 people here talking about cancer, but more importantly, talking about progress.
Patients should know the theme of ASCO, which is like the Super Bowl for oncology. There are 35,000 people here talking about cancer, but more importantly, talking about progress.
I think the biggest theme has been personalized medicine. That’s a phrase that sometimes is used almost to the point of overuse, but I think authentically means individualizing treatment.
First of all, defining a cancer as specifically as possible. For instance, rather than saying colon cancer, which side of the colon that it started on? That matters. Then what molecular or genetic characteristics does the cancer have that can refine the patient’s treatment?
Actually, a lot of the meeting has been about doing less, not more. What I mean by less is intensifying treatments, which means fewer side effects, but arguably no decrease in outcome, meaning that the cancer related outcomes like survival don’t get worse, and the patient was spared side effects.
The most unbelievable study happened. In fact, it was so important it got coverage in the New York Times. Patients with a relatively advanced but not yet metastatic rectal cancer had a vulnerability to immunotherapy. With just immunotherapy, all 12 patients — which I know sounds like a small study — had a complete response to the cancer.
Not only did they not need surgery, but they didn’t need chemo. They didn’t need radiation. It was such a big deal that it actually got covered in The New York Times in addition to getting, of course, a lot of publicity here at ASCO.
Those are the kind of things that are happening. You can see the spillover into popular media and popular culture when something of that magnitude happens. Traditionally, we have thought every patient with a cancer like that would require chemo, radiation and a big operation. Now it turns out, again, it’s exceptional that a certain group of patients can “only” get immunotherapy, which is amazing.
Patient access
We do walk this tightrope of hope and hype. I don’t think it’s hype, because the science is there. I think the difficulty is in overpromising logistically. It’s okay for patients to ask their oncologists about the progress that they’ve heard about here, but I do think there has to be a little bit of realization that it will take a little bit of time to implement.
Now, having said that, the really groundbreaking changes will almost immediately change the guidelines by which doctors — and let’s be honest, insurance companies — decide how to arbitrate care. You actually should not have to wait very long. The FDA monitors a lot of this activity and is pretty quick these days to approve new drugs and new indications when they see evidence of benefit.
Precision in oncology and what that means to care
To be honest with you, oncology has this not-proud history of indiscriminate toxicity. Quite famously, people know that people on chemo tend to be very sick. They tend to lose their hair. They can have permanent damage.
We really are trying to be more targeted in the treatments we get, and so less really is more. It’s interesting. I actually had a patient reach out to me and say, “Don’t say ‘less’ because patients don’t want to feel like they’re being treated to a lesser degree.”
There’s a difference there. It is quantitatively less. It is not qualitatively lesser. We’re not actually treating you in an inferior manner. I would actually argue that we’re having it both ways. We’re having an equal outcome in regard to your cancer, while we’re preserving you and your quality of life.
For people that don’t get to attend, I think it’s actually really important that you know that there’s gatherings like this. ASCO is a massive, massive event. Again, I think what’s so exciting is we’re all pulling in the same direction. We’re all trying to make things better for patients. Regardless of what specific cancer you might be interested in, there is research being done. We are slowly but surely, in some cases very quickly, moving in the right direction.
For MPN patients, I think there should really be a tremendous sense of hope. There are many, many new therapies in development, some that are really having some very positive results.
I’m at this meeting. I’ve got this 20-year member badge here, and I’ve been a member here for about 25 years. But I saw my first MPN patient now almost 30 years ago.
The first 15 of those 30 years, we did not understand the diseases to a great degree. This is before we had discovered the JAK2 mutation and many other associated mutations that are very important in the biology of why MPNs develop and why patients are afflicted.
Sometimes we learn even from diseases as different as lung cancer or breast cancer, and they learn from us.
Dr. Ruben Mesa
During that time, it was very hard to develop treatments that were effective against the disease, because we didn’t know that much about them. The last 15 years have really been unprecedented.
We now have several approved drugs for MPN, three in myelofibrosis, ruxolitinib, fedratinib and pacritinib. The recent approval of ropegylated interferon alfa-2b, or Besremi, for individuals with polycythemia vera. There is an unprecedented number of new medicines that are in development. That may have implications, whether you have MF or PV or ET. It’s really a tremendous time to be hopeful.
What are the top focus areas trending for oncologists?
I think there are several things. One, a meeting like this, there’s a lot of innovation in terms of how we care for patients. If we’re using telemedicine, how do we do that best? How do we help to care for everyone in society, and how do we help to improve diagnostics? How do we help better monitor patients in a way that’s more convenient, whether through their device or their cell phone or other things?
Second, there are real innovations in different ways that we’re treating cancer. They have started more in other types of cancer, particularly around the treatment of the immune system, with either ways that are vaccines against cancer or even treatments that we call cellular treatments that, again, use the body’s immune system.
There are things that are called CAR T or CAR NK. These are treatments where these cells are programmed to go after the disease itself. They have not yet started in MPNs, but we’re learning a lot about them from other diseases and then really hoping to apply those things in the future.
I think, again, the treatments that we’re going to have are going to continue to evolve, but we learn from other blood diseases. We learn from the diseases that are cousins of MPN, diseases like myelodysplastic syndrome or even acute leukemia. Sometimes we learn even from diseases as different as lung cancer or breast cancer, and they learn from us.
I just came from a meeting with a colleague. She is looking at using a medicine we use in MPNs, ruxolitinib, but combined with a different type of medicine to treat patients with advanced lung cancer. The combination with an inhibitor against her protein called AXL may have a benefit against treating lung cancer. We learn from them, but they learn from us.
Dr. Kerry Rogers: Chronic Lymphocytic Leukemia (CLL)
Larger studies follow-up
This year, I think the theme is kind of follow-up on larger studies, and I was really excited to present some work that we did. We have a study at Ohio State that’s a combination of obinutuzumab, ibrutinib and venetoclax for people with CLL given for just a little over a year.
We’re seeing longer remissions off treatment for patients.
Dr. Kerry Rogers
We’ve now looked out to 4 years with the first 50 people treated with this regimen in our phase 2 study. The big question is, “How long do people stay in remission after only one year of treatment?” It looks like people are staying in remission.
For people that took this as a first treatment, it looked like 96% of them were alive and without leukemia returning at this follow-up. For people who took it after another treatment, 85% were alive and without the leukemia recurring. That’s really outstanding for something where you get treated for one year and you can remain in remission.
That is kind of a theme we’re seeing in CLL now, because we did these really great studies to combine non-chemotherapy drugs to get really deep remissions for our patients, and then they could be off treatment, back in observation, living their lives and not have to deal with taking treatments every day or chronic side effects.
There is a study called CAPTIVATE, which had a group of 159 people with CLL treated with just ibrutinib and venetoclax for a little more than a year. They received similar results for our 3-drug regimen. For the extended follow-up, they’re at 3 years. 88% of those folks are alive and without their leukemia returning. 88% might not sound awesome, but this is really awesome when you consider people aren’t taking treatment.
At the European Hematology Association meeting, which is coming up in a couple weeks, we expect to see a follow-up on a study called CLL 14, which is the venetoclax and obinutuzumab study. This is really just kind of a theme we’re seeing, where we’re seeing longer remissions off treatment for patients.
It might not seem brief for a year, but that’s brief considering the alternative is taking BTK inhibitors every day. People can just remain healthy and in remission.
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