Finding a Healthy Balance: Tools for Managing CLL-Related Stress

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Topics include: Living With Chronic Lymphocytic Leukemia

This Partners program features a dynamic panel of chronic lymphocytic leukemia (CLL) patients and mental health professionals discussing the effects of stress on people living with CLL. Can stress affect CLL growth? The panel walks through a variety of stressors brought on by the disease and treatment, and the impact of stress on a person’s well-being and cancer risk. How can patients learn to cope? The panel also provides expert and patient perspectives on stress management techniques.

This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello, and welcome to Patient Power in this Partners program. I’m Andrew Schorr. Partners is all about us working together on issues that we face in chronic lymphocytic leukemia, and joining me are some wonderful guests who are gonna be talking about stress as it relates to CLL. Does it have physical effects? Can we reduce the stress? Can that have a benefit? And, we have people who really are living it and thinking about it a lot. Me too, because I was diagnosed in 1996 with CLL. So, let’s go around the continent, if you will. I wanna start in Louisville, Kentucky with Paul Salmon, and Paul is a professor, actually, at the University of Louisville, right, Paul?

Paul Salmon:   

That’s right, yeah.

Andrew Schorr:           

What’s your field that relates to this?

Paul Salmon:   

Well, it’s kind of a blend. My primary area is clinical psychology, so I do teaching, research, and community work in that general area, with a particular focus on stress and stress management. A number of years ago, I was really fortunate to work and collaborate with Jon Kabat-Zinn, who started a program called Mindfulness-Based Stress Reduction at the University of Massachusetts Medical Center. That was back in 1995, and I was so taken, so impressed with his work and the work of their clinic, that that’s pretty much been the foundation for everything I’ve done since.

Andrew Schorr:           

Well, yeah, but we should mention there’s another connection here. About a year ago, Paul, you were told your white count was going up, and guess what? A diagnosis of CLL. So, you’re living it a little bit now.

Paul Salmon:   

Sure, yeah. I’d have to say that the meditation practice over the years really was a good preparation and a good foundation. It’s really all about facing things that, say, occur on a moment-by-moment, day-by-day basis, and I think the more present-moment-focused you can be, it really does have a powerful impact on managing stress.

Andrew Schorr:           

Well, that’s what we’re gonna talk about. Now, let’s go up to Toronto, where an old friend of ours, Mark Silverstein, has been living with CLL since 2010, and has been through it. We should mention Mark Silverstein decided along the way to be trained in psychotherapy and actually counsels people who are dealing with advanced cancer. Mark, you’ve been living with it; just an update from you—last time we spoke, after many different medicines, you had a transplant, but now you need more treatment, I understand.

Mark Silverstein:         

Correct. I have to admit it was a little disappointing that the potential for a cure was there, and right after about a year—my year anniversary after transplant, I started relapsing again. It was a very big disappointment, but thankfully, prior to transplant, I was on venetoclax (Venclexta), and I did venetoclax, rituximab (Rituxan), and I stopped it. I didn’t get a resistant to it. So, we started venetoclax, backed up again, and thankfully, it is working for me.

Andrew Schorr:           

Knock on wood. We sure hope so. And, related to your situation, here, you are counseling other people, and you’ve gotta have the stress, or however you’ve dealt with it along the way. So, we’re gonna talk about that. Let’s go to Ohio State, one of our largest leukemia centers, and there is a professor, Barbara Andersen, who actually studies all this, and Barbara, this whole connection of stress and illness in hematologic malignancies and CLL—that’s your field, right?

Dr. Andersen:  

Yes. I’ve been—I’m a professor of psychology, and like our colleague here, trained as a clinical psychologist, but have been doing research in cancer for essentially my entire career, and in that, moved into the area not just of stress, but what effect stress may have on other biologic responses such as immunity, and that’s certainly important in the context of virtually every cancer there is, it turns out.

Andrew Schorr:           

Well, I understand. As a CLL survivor, if you will, my doctor insists that I get immunoglobulin infusions to boost my immune system every month. This is expensive stuff, like $10,000 a month, so I understand the worry about your immune system, and fortunately, I’m doing okay. So, just to start with you for a minute, Barbara, do you believe there’s a connection with stress that we have that either led to a trigger of CLL or effective CLL?

Dr. Andersen:  

Well, there’s research not just on the blood cancers, but also solid tumors as well, so many studies that people have done things called a meta-analysis, and in those summaries of the literature, there is data that does not support the relationship between stress and the onset of cancer.

However, there’s very reliable findings across the years, across tumor types, that stress is indeed related to disease progression, so that we have studied breast cancer patients, currently studying those with lung cancer and CLL patients, and in all of those studies, stress has a really toxic effect in that it is not only biologically/psychologically disruptive when it is occurring at the worst periods, like cancer diagnosis, but it also predicts—portends—predicts poor quality of life, depressive symptoms, and other kinds of outcomes down the road. And so, that is part of what the toxicity of stress is.

Andrew Schorr:           

Okay. I’ll just say—we all have our own anecdotes, and I know maybe this hasn’t been rolled into a clinical study. My diagnosis in 1996—a long time ago—CLL followed a year when we’d had a lawsuit. Somebody—frivolous lawsuit, and somebody sued us, and I’d felt personally attacked for months and months. And then, I had a routine blood test, and it showed an elevated white count, and we were off to the races with this condition, CLL, I’d never heard of.

Now, whether that has any scientific validity, I don’t know, I just know that that was a tough time in my life. We’ve spoken to other people who’ve had divorce, or lost their job, or a financial situation, so I don’t know, but let’s talk more about the managing stress after diagnosis. So, Paul, you obviously have studied it, but now you’re living with it, so you’re in this one-year, watch-and-wait situation. You were told you probably have this condition you never heard of, CLL. How have you used what you know to minimize stress?

Paul Salmon:   

I think there are several parts to it. I guess in one way, the initial diagnosis, of course, came as a surprise, because after all, I had just gone in for a routine workup, and in every other respect, everything else was great; all my other numbers were fine. Then, it was kind of like, “Well, we just have this one number that seems to be out of the ordinary, and maybe we should look into it.” That was my first inkling, and maybe something that I wondered about a little bit.

And, I should mention that my father probably—may have had CLL. We don’t know, but he had an elevated white blood cell count for years. So, that’s kind of—and, there are cancers in the family. I take really good care of myself. I work out, I meditate, and do all the right things, and of course, people who are diagnosed with conditions like this often go through an initial phase where they say, “Why me? I do everything right. I follow all the rules. I eat well.”

And, in a certain way, what’s helped me is to become real curious about this and to look for interesting connections that I can make. I can see where people—you could get into a sense of blame or feeling like somehow, you’re responsible for what happens, but really, the foundation of the meditation practice of mindfulness—which is based in Buddhism—I think there’s a view of the world and of how things are that certainly helps me keep things in perspective.

Andrew Schorr:           

You seem calm. You seem pretty calm.

Paul Salmon:   

I just take great joy and pleasure in what’s happening on a moment-by-moment basis, and I think a really important element is I can find my mind—I’ve been meditating for years, but the essence for me of mindfulness is that paying attention to what’s going on in the moment, and then noticing when you’re not in the moment. That’s kind of a critical thing, because you get off wondering about things, predicting, and trying to make projections, but when I find myself doing that, I say, “Okay, back to the breath, back to the moment, and let’s just go with that.” So, that’s very helpful.

Andrew Schorr:           

Mark, you were nodding your head there a minute ago when he was talking about living in the moment. So, you’ve had a rollercoaster with CLL.

Mark Silverstein:         

Absolutely. Often, CLL is my moment to be living in, but yeah. I absolutely agree with everything Paul said. 

Andrew Schorr:           

So, how do you do it? Because you’re a man who’s lived with tremendous uncertainty. We all have uncertainty, and I’m gonna ask Barbara about this in a minute. The thing that weighs over me as a cancer patient—two blood cancers, because I have myelofibrosis as well—is uncertainty. But, what I know is the now. What about you? With this rollercoaster, you’re on new treatments now after the transplant, which you hoped could be curative. How do you manage that?

Mark Silverstein:         

It is often challenging at times. Honestly, I probably went through a bit of a grieving process after relapsing after the transplant. There was some hope that there was a cure in there. And so, I think both my wife and I actually went through a bit of a grieving process through it, and part of it is allowing yourself to go through these things and experience them as opposed to suppressing them. 

But, as Paul said, the mindfulness—I’ve taken mindfulness courses, walking—all these things help. Our emotions—I like to believe that we are not our emotions. They don’t control us. We can control them. If we understand ourselves well enough, we can make different choices. As mindfulness teaches you, something comes into your head, you put it up there for now, say, “I’ll come back to it later,” and come back to the present moment, and that’s really the most important thing.

The existential challenge of CLL especially—what I’ve gone through is 17p, and all the treatments, and all the relapsing – it is challenging, and it’s challenging to stay in the moment, and I’m not gonna lie: There are times that I’m not in the moment, I’m in the hell of CLL world, so to speak, but it’s bringing yourself back as quickly as possible to what matters. You can’t live in the future too much. You can’t live in the past, because then, you’re not in the present, and really, the present is all I have, because I don’t know what’s gonna happen next. And so, my need or my motivation to stay in the present is huge, and so, anything I can do to manage that is where I focus on.

Andrew Schorr:           

Right. I remind myself, “I don’t know about tomorrow, but right now, I know about today. I’ve got a great cup of coffee with my family on it, and that’s what I know.” So, Barbara, there you are at Ohio State. It has one of the largest leukemia clinics in the world. People come from all over, and you get people—among the patients who come—who are freaked out, and I get calls like that, and I know you have patients like that. How do you help people get grounded?

Dr. Andersen:  

There’s no, simple answer to that question, but on our end in terms of what we do, we help them process this current experience. We also teach them, help them understand that while stress is really buffeting them right now, in many respects, that’s a normal response. They have gotten very bad news, just like you would have for other kind of traumas in one’s life. 

But, we can also get ourselves back to our baseline, and we can do that by discovering how stress is—their stressful thoughts, their actions in terms of what are they doing when they are feeling at their worse, what are they not doing, and really, what are those bodily sensations that are just kind of firing off, like stress-related headaches, muscle tension, and so on.

So, part of it is dissecting, if you will, what stress is like for them because then, we can use that information as a cue to work on how I might respond differently. So, we teach them strategies for relaxation. You all have embraced mindfulness. In our work, we’ve used other strategies, like progressive muscle relaxation, to physically relax the body and do that in a way that’s portable for people to use. We’ve also – oftentimes, people are at a loss for—“I don’t know anything about this disease,” and so, oftentimes, as you all have found, I am sure, that information is helpful. 

But, another big piece that is important not only for CLL patients, but all cancer patients, is this thing we call social support, and a big focus of our work has been helping people to not only receive support from others, because that’s oftentimes very difficult to do, but also, what can they do to ask for support, because people are reluctant to ask as well?

But, it’s looking at their social relationships and helping them to understand how might I enlist the help of significant people in my life, how do I cope with the fact that people’s responses to my request for social support sometimes aren’t optimal, and how to cope with that. But, social support is a huge part of what we try to do.

Andrew Schorr:           

I just wanna comment on that one for a second. So, the other day, I was invited to have coffee with a gentleman in his 50s who was diagnosed with CLL four months ago, is on treatment, and his wife knows; nobody else knows. His teenagers don’t know. His wife has eight siblings, all in the area. Big potential support group. Nobody knows. His aging parents don’t know.

And, we spoke about this burden that he was carrying around by keeping it a secret. But, he was afraid, Barbara, of—he was worried about social report. He knew he’d get it from some people, but he knew they’d get tons of questions and misunderstanding about CLL as a cancer, and whether he was going to die tomorrow. So, he just—not only did he find it easier to just keep it a secret right now, knowing he had a lot of stress with it, but he was worried about if he told people and sought social support, there’d be a downside as well as an upside. Could you comment on that—taking that risk?

Dr. Andersen:  

Well, one of the things we help people to do when thinking about their social life is in some sense, who’s on the page for you? Who are the individuals that you see as being in your social sphere? And then also, thinking about are those individuals that are—that could provide emotional support to me? Are they individuals that are better helping me with things? 

Because not everybody’s good at everything, and so, sometimes people misconstrue when—for example, I remember a woman who said, “I have been so difficult with my dad,” and what she was realizing was she was expecting that her dad would sit down and talk with her about this experience. But, he wasn’t a person that did those kinds of things, but he would come over and do anything for her, but she was just able to see that people in my social environment—not everybody’s the same, not everybody can do all things—and be aware of that, not make negative attributions to people when there’s a mismatch.

But, your point about a person trying to control the information—oftentimes, that’s a product of them trying to control their own emotions, that is not a “CLL will be bigger if everybody knows about it” kind of thing. “I can only deal/cope with so much right now.” For some people, it’s just a strategy to, in some sense, control their stress.

Andrew Schorr:           

I respect people whatever they say, but Paul, do you tell people or your family? Do they know? How do you feel about whether it diffuses the CLL, or keeping it close controls it?

Paul Salmon:   

I think what I’d say is that I’m in an ambiguous state right now, and I’m really not—I haven’t lived through this to the extent that, for example, Mark has. I’m just really awed and impressed, Mark, by your courage and your ability to move through this, and I take a certain inspiration from that. I’m selective about how I share this with family, but I’m kind of in a situation of not yet being symptomatic, so in a way, I haven’t really lived the experience of people who are further along.

So, I guess I’m just judicious about it and don’t make a big deal about it, but if somebody asks, or if there’s an opportunity that would warrant sharing it, I will, but…So, maybe you’ll have to check back at some point in the future and see how it’s gone.

Andrew Schorr:           

Mark, you’ve been pretty public about it. Do you take strength from people? I’m sure there are people now who say, “Mark, how are you?” Obviously, you’re taking steroids now, you can see the effects of it, and there are certain symptoms you’re dealing with. How do you interact with people, and does it give you strength, or is it a downer, and how do you cope with any of that?

Mark Silverstein:         

I think it took a while to accept it and accept it as part of who I am at this point, and I went through—as ridiculous as it might sound, I was laid off from work after I came back from chemotherapy and my initial diagnosis, I had to go find another job, and I found in my interviews, I was just crashing and burning, because I couldn’t talk about why I hadn’t worked for several months, why I was off for a year, and all this other stuff. I finally came to terms with the fact that I had to accept it and actually talk about it, and once I did that, I actually ended up with a job.

The fact is, it is part of my life, it is what it is. Unfortunately, lots of people—I’m their worst nightmare. Someone with cancer is their worst nightmare. They don’t really want to know about it. What they ask is not really specific to the cancer. “How are you?” is not really a specific cancer-related question. So, I actually try to—I wear it; I don’t throw it in people’s faces, but I wear it…not proudly, but as part of my life. It’s actually part of who I am at this point. And so, I don’t shy away from it.

Andrew Schorr:           

Barbara, Mark runs support groups as well as seeing people privately as a counselor. What about support groups—whether it’s informal—I used to have a group in Seattle, where we used to live, and found ourselves on the Internet, all diagnosed with CLL, and actually used to have lunch together, not so much to talk about the CLL, but just to be people. But, what about that—getting together with others and talking?

Dr. Andersen:  

That’s very interesting because we ran groups for years—they were with breast cancer patients—and after our part ended because they were time-limited, it was oftentimes the case that women would get together there after for lunch, just like you were doing. 

People matter—numbers of people matter. Individuals that…are at great risk for their struggle with cancer are those individuals living alone, not having a partner. They’re at great risk for poor outcomes, and that’s not only from cancer, but you can see that effect across diseases. And so, having a confidant—it doesn’t have to be your spouse, but having a confidant is of great benefit in coping with this experience, as you all know. But, for those that do not, it’s a great, great loss.

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Page last updated on August 20, 2019