Newly Diagnosed With CLL: What Do You Need to Know?

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Topics include: Treatment , Understanding and Living Well

In many cases, the first time a person hears chronic lymphocytic leukemia (CLL) is upon diagnosis, leaving room for an unsettling fear of the unknown. What should patients and caregivers know about the disease right off the bat? For patients starting their journey with CLL, a panel of experts, including Dr. Philip Thompson, from The University of Texas MD Anderson Cancer Center, Dr. Susan Leclair, from University of Massachusetts, Dartmouth, and Online Host, CLL Patient and Advocate Carol Preston, discuss what newly diagnosed patients should know; from diagnosis and disease monitoring, to second opinions and making treatment decisions. The panel also offers practical tips for coping with stress and anxiety. Watch now to learn more about living with CLL.

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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.  I'm Andrew Schorr.  Stay tuned for just a wonderful discussion now for people who are newly diagnosed with CLL, What do I need to know?  And I would say what does your care partner, caregiver need to know.  I'm joined by a wonderful panel of experts.  That includes my good friend Carol Preston, who was diagnosed with CLL.  When was that, Carol?  Back in 2006?

Carol Preston:

Correct. 

Andrew Schorr:

Okay.  And again treated again after that in 2010 after you relapsed.  And then also Dr. Susan Leclair, laboratory science professor emeritus who joins us from Dartmouth, Massachusetts.  Susan, welcome back to Patient Power.

Dr. Leclair:

Lovely to be here. 

Andrew Schorr:

Thank you.  And Dr. Philip Thompson, who is a wonderful CLL specialist at the University of Texas MD Anderson Cancer Center in Houston.  Dr. Thompson, welcome back to Patient Power. 

Dr. Thompson:

Thank you for having me.  Delighted to be here. 

Andrew Schorr:

Okay.  Let's get started.  I want to start with you, Carol, and then just go round robin, very quickly, what's a headline you have for our viewers, patients and family members, when they are newly diagnosed that you want to impart to them? 

Carol Preston:

Get a second opinion with a specialist.  Get a second opinion with a specialist. 

Andrew Schorr:

Okay.

Carol Preston:

And the reason I say that, before you go on, is because I did not do that the first time, and as we get into the conversation I'm convinced there were ramifications from that. 

Andrew Schorr:

Okay.  We're going hear more from you about that.  Susan Leclair, a headline for people newly diagnosed.  You've corresponded over the years with so many patients, people ask you what's the headline you want to give them. 

Dr. Leclair:

Take a deep breath and slowly exhale.  This is something that you can take your time with.  In a way, you have all the time in the world.  This is not a panic.  Carol's right.  Go investigate the best person that you can have as a physician, but for your family and for yourself, take a deep breath and try and slow down. 

Andrew Schorr:

Right.  Susan remembers a woman who was a leader, a patient opinion leader on the Internet in CLL, Granny Barr Black Ritz, who was a big mentor to so many of us, and Esther and I spoke to her on the phone when I was first diagnosed in 1996 after we connected on the Internet, and she had two words for me.  Chill out. 

Dr. Leclair:

Yes, that would be what she would say.  And that's I think the most important thing because, as Dr. Thompson will say later and I'm sure everybody else will, you can't be panicked in these conversations.  You have to show down, take your time, and you'll be okay.

Andrew Schorr:

Dr. Phil Thompson, people come from around the world to see you and other MD Anderson physicians sometimes initially or the second opinion that Carol was talking about.  You walk into the room, how do you start with people?  What's the headline you would start with our audience now? 

Dr. Thompson:

Well, I'd like to kind of echo some of the things that have already been said, and I would say it's very likely not as bad as you think it is.  I think every patient that comes to see me, they've been told they have the L word, and they're terrified.  They're starting to have images in their mind of when their funeral is going to be.  And for the vast majority of patients that's not something that they're going to have to consider for decades, if at all, because of the dramatic advances that we've had in treatment and also because many patients don't even need treatment. 

So I think that's the biggest thing in most first consultations I have, is just kind of going through the information and just being able to generally give people a lot of better news than they thought.  And the other thing that I usually tell people is you're not going to have a bone marrow biopsy today.

Andrew Schorr:

Yay.

Carol Preston:

Yay. 

Dr. Thompson:

I was saying to a patient the other day, they came in, and I sort of had gone through all of their prognostic information and talked about we don't need to treat you and all that sort of stuff, and then right at the end I said, oh, you don't need to have a bone marrow biopsy, and they kind the visibly relaxed.  And I said to them I probably should open with that. 

Carol Preston:

That's great.

Andrew Schorr:

There you go.  Well, things have advanced, and I do want to just mention, you mentioned some people, there's a percentage of patients, the minority maybe, you don't need treatment or never need treatment, and that's my friend Pat Ford, who we've had on Patient Power. 

He was also diagnosed in 1996.  Does he have a somewhat elevated white count?  Yes.  Has it stayed more or less where it always is?  Yes.  So whether you call that smoldering CLL, whatever, he's just never had treatment.  We're talking about 22 years. 

Dr. Thompson:

Yep. 

Andrew Schorr:

Okay.  Let's go on.  So CLL, I never heard of it when I was diagnosed.  Carol had you ever heard of it?  Had you ever?

Carol Preston:

Never. 

Andrew Schorr:

Never.  So it's like ah.  And then hear "leukemia," and you think about a young child, four or five years old with leukemia, no hair, very aggressive treatment, and then if you've met people, older people maybe with acute leukemia, and fortunately the landscape is changing there, but usually a pretty fatal condition, you say, well, that's me.  Susan, what is CLL?

Help us understand.  What is it?  You've looked at a million blood tests and your students, what do you see?  What is it? 

Dr. Leclair:

Well, I will tell you that the worst thing you're ever going to hear is somebody looking at you and saying if you had to get a leukemia this is a good one to have because I think that—yeah, I that's someplace where you want to murder people.  But when we look at your cells they don't look that bad.  You would expect with leukemia, with the word "leukemia," that you would have this, I don't know, unexplained explosion of cells that you've never seen before in your life. 

This is a chronic condition.  These cells look reasonably at times, normal.  They may not work well, but they can look normal.  You typically have a high white count.  Well, what is high?  High could be not high at all. 

It could be hugely high.  The high white count we talk about is of a specific type of cell called a lymphocyte in particular a subtype of lymphocyte most common, which is called B lymphocytes.  But you will get an increase in that one cell line.  Your red cells will probably be fine in the beginning.  Your platelets will probably be fine in the beginning.  No one knows.  There are so many different variations and routes you can take, it's hard for me to say that those will be fine forever, but in the beginning there's usually just an increased number of these typically B, typically looking pretty okay cells.  The problem is their function doesn't work. 

Why doesn't their function work?  Oh, if I had that, I would be on my way to Oslo to get a Nobel Prize. 

Somehow, somewhere in the course of your life a mistake is made in a cell, in your genes, and from that stumbles a clone of cells that look kind of okay but don't work okay.  That's what we see.  That's how it happens.  What genetic mutations?  What are we up to now?  Fifty of them that might be involved in this, so, in fact, no one will know that answer for a while. 

Andrew Schorr:

Okay.  Let me see if I've got this right.  Too many B lymphocytes among the white cells, and you mentioned about bone marrow biopsy, but we're not going to have that right off the bat, you know, but, Phil, but the idea was when you can get too many it can at some point clog up the blood factory, right, and start affecting your ability to fight infection but the number of platelets you have to stop bleeding, things like that, it starts getting in the way of things.  Is that right?

Dr. Thompson:

Yeah, absolutely.  So the problems that you can have from these abnormal B cells, firstly, I think  they can actually affect the function of your normal immune cells.  So by having these B cells there, even if there aren't huge numbers of them, they can actually cause dysfunction of the T lymphocytes and the way in which they conduct your immune system's function. 

So even—some patients, even with early-stage CLL where it's otherwise causing no problems, their other blood counts are normal, they can have an increased risk of infection.  They can also have an increased risk of things like skin cancer where immune system is surveillance is. 

And the second thing that can happen is they can accumulate in lymph nodes, they can accumulate in the liver and the spleen, so you can have enlargement of lymph nodes in your neck or your arm pits.  The spleen can become enlarged. 

And then the third thing that can happen is the CLL cells can also live in the bone marrow, and they can crowd out the normal bone marrow.  And essentially I sometimes describe it to patients as you've got a factory for making cars, which is your blood cells, but it's piled high with junk, and there's just no room to make the normal blood cells.  And so you can end up with anemia, which is not enough red blood cell and therefore not have enough oxygen-carrying capacity in your blood.  People can feel tired, short of breath when they exert themselves. 

And then you also mentioned the platelets.  So the platelets are the things that clot the blood.  If you don't have enough of them you may notice some easy bruising and bleeding.  And so I mentioned earlier that many patients at diagnosis don't need to have a bone marrow biopsy because we can diagnose CLL without a bone marrow biopsy. 

But if with we get to the point where patients are anemic or patients have a low platelet count, that can be a reason that we need to treat a patient.  And we would always do a bone marrow biopsy before treatment, and we would do it if we needed to investigate why a patient was anemic or had the low platelet count. 

Andrew Schorr:

Okay.  We'll come back to that.  So let's look from the patient and family perspective.  So, Carol, you were told you had this leukemia you never heard of.  I was too.  How do you cope, or are you like on the floor in tears?

Carol Preston:

Yes.  Let me just mention that I had a young cousin decades and decades ago who around age 4 or 5 died of childhood leukemia, so leukemia was not an unknown word in my lexicon or vocabulary, and as soon as I heard that word attached to a diagnosis for me, pretty much, yes, you had to scoop me off the floor compounded by the fact, and I think many patients have gone through this, it never seems to be a really good, convenient time to get sick. 

Andrew Schorr:

No.

Carol Preston:

Right?  So when I was first diagnosed, when I was first diagnosed it was around the Fourth of July week, and there were many people, many specialists and physicians who go on vacation that week, so I didn't have a lot of options.  When I relapsed, it was right before Christmas in 2009, and, Andrew, you and I both share a third cancer—a second cancer.  I know that's not the discussion, but again right after Christmas when nobody's around. 

So compounding the fear of this word "leukemia" and the disease about which I had never heard was the fact that people were hard to reach to move forward.  So that in itself becomes very frightening, from my perspective. 

Andrew Schorr:

Right.  So I'm going to add one other element, which is so true.  Susan, you commented on it when you said you look at the cells and in some a cases they're not doing much.  It's not an aggressive cancer.  Many of us are familiar, unfortunately, and our families and friends with people who maybe had more aggressive cancers, or where it was treated more aggressively.  Woman has breast cancer, I want it out.  Somebody has lung cancer, maybe you're going to start treatment right away, whatever it is.  You have skin cancer, we're going to cut it out. 

But something happens right away, but there's this approach in CLL for many, for me it was four-and-a-half years, watch and wait.  So what are we watching, Susan?  What are we watching?  Because for us it's unnerving.

Dr. Leclair:

Yeah, and I think I'm going to change that.  Physicians will tell you, other healthcare providers will tell you watch and wait.  I think the correct term is watch and worry. 

Andrew Schorr:

Right. 

Dr. Leclair:

Because no matter how strongly you believe in your physician walking out that first day with someone saying to you, yes, you have leukemia, and I'll see you in about six months.  Maybe four, I don't know.  It's not really exciting yet.  You are clanned psychologically to the get it out.  Well, you can't get out a leukemia.  There's no place to get it because it's in your blood, and it's in the lymphatics, and it's in other places, so it's very hard to deal with that. 

And having said that, because I wanted to say something about watch and worry I've forgotten your question, so could you just…

Andrew Schorr:

…what are we watching for? 

Dr. Leclair:

Okay. 

Andrew Schorr:

So in other words Dr. Thompson or another doctor may say, okay, you don't have to see me for a while, but I want you to go get a blood test.  I'll get the results, whatever, but we're not doing anything now.  Okay?

Dr. Leclair:

Okay.  That's kind of, that one at least is a relatively easy—unless you ask why—item to explain.  These cells live on their own.  They have decided that they're not going to answer any control mechanisms that the normal cell responds to.  As long as they sit here and do nothing, like a 16-year-old in the summertime, I guess, we're not going to be overwhelmingly afraid of them because they're not moving, they're not acting out. 

But at some point they will start to increase in number, or they will change in morphology, and either one of those suggests that there's some movement, there's some activity going on.  May not be anything overwhelming.  Could be you have a cold. 

Maybe something even, I don't know, you got a bruise because you fell, or it could be that B cells are continuing to become destabilized and are becoming more assertive.  It takes them a while to become aggressive, so I'll…

Andrew Schorr:

One other question.  You talked earlier about the white blood count may be fueled by the B lymphocytes in CLL, so is the number, is the number, just the number necessarily worrisome, or does that vary by person?  So somebody could have a much higher number, feel like they're living well, and somebody could have a little bit over the edge high number, and they're pretty sick. 

Dr. Leclair:

I'm going to steal Phil's thunder.  No good physician treats a number.  They treat a patient.  Sorry I stole it, I know.  He's laughing at me now.  But it's true. 

If you feel good at 20,000 cells, that's wonderful.  If you feel good at 200,000 cells and everything has been stable for a while, then that's wonderful too.  The number itself is not as important as the change from the last time or the time before.  This is a long-term consideration, so want to see a year's worth of data maybe, minimally, six-months’ worth of data in order to be able to make the sentence these cells are really just sitting there doing nothing, or they're becoming more assertive or something's wrong.  You need a time limit here. 

Andrew Schorr:

Okay.  Let's get to our Dr. Phil, Dr. Phil Thompson.  So in my case, no treatment for four and a half years under the care of one of your mentors, Dr. Keating at MD Anderson, and my white count finally got to 253,000.

And I did have some swollen lymph nodes and I was--he said, are you tired?  I didn't know it, but I was, so I was having fatigue as well.  Okay.  First of all, take us through what tests are you going to do?  If not a bone marrow biopsy early on, beyond just a normal CBC are there other tests you will do to understand what is that patient's status, and then what changes will you look for where you begin to say watch and wait or watch and worry, maybe we're coming to the end of that. 

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Page last updated on October 26, 2018