[ Inglese] Understanding the Ins and Outs of Watch and Wait

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Topics include: Treatment , Understanding and Patient Stories

Many chronic lymphocytic leukemia (CLL) patients wonder why, after being diagnosed with cancer, they aren’t being treated immediately. What should CLL patients do during watch and wait? How long does the watch-and-wait period last? During this “Understanding the Ins and Outs of Wait and Wait” replay, a panel of experts including Dr. Philip Thompson and Dr. Jackie Broadway-Duren, both from The University of Texas MD Anderson Cancer Center, discuss the value of the watch-and-wait strategy and explain what your healthcare team is observing during this time, signs to start treatment and more. CLL patient Cathy Hamilton also joins the discussion to share her story, and how she stays proactive and positive. Watch now to learn more. 

Provided by CLL Global Research Foundation, which received support from AbbVie Inc., Gilead Sciences and TG Therapeutics.

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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 greetings.  So there you are, diagnosed with CLL and you're told no treatment begins for a while, maybe months or years.  How do you cope with this watch-and-wait period?  I had to do it for four years.  You're going to meet somebody who's right in the middle of it, right now.  We'll discuss all that in the next 60 minutes.  Greetings from Carlsbad, California, north of San Diego.  I'm Andrew Schorr. 

You may have a question for yourself or a loved one about this watch-and-wait or watch-and-worry period.  Send your questions in to cll@patientpower.info, again, cll@patientpower.info.  Now, we're specifically in this program discussing this watch-and-wait period so you may be looking ahead to treatment, but it's less about treatment now and more about why watch and wait, what are you watching and how do you wait?  How long and what are the indications for treatment?  That's what we'll really be discussing today.  And remember not to make your questions so specific about you because we don't want to practice medicine over the Internet.  That wouldn't be fair to our panelists or you.  Always discuss what you learn on our programs with your own healthcare team so you get what's right for you.  Okay. 

Are you ready to go?  For the next 60 minutes, let's meet our panelists.  First, let's go down to Houston, Texas, for our two experts joining us from MD Anderson Cancer Center.  First, Dr. Phil Thompson.  Dr. Thompson is a CLL specialist.  He's been on our programs before.  Phil, welcome back. 

Dr. Thompson:

Thanks, Andrew.  Nice to be here. 

Andrew Schorr:

Okay.  And working hand and hand another doctor, who is a nurse practitioner, and that is Jackie Broadway, who's worked with CLL patients for decades now.  Am I right, Jackie? 

Dr. Broadway-Duren:

That's correct. 

Andrew Schorr:

And I've seen you many times.  A great team, and Dr. Thompson and Dr. Broadway work very closely to support CLL patients who come to MD Anderson.  We're going to talk to them about watch and wait a lot during this program. 

But let's meet somebody who's living with it, and that's my new best friend, Cathy Hamilton, who joins us from Lawrence, Kansas.  Cathy, you've been in this watch-and-wait period now for 10 months, right? 

Cathy Hamilton:

Just—yes.  10 months plus. 

Andrew Schorr:

Okay.  How did this start for you? 

Cathy Hamilton:

It started with a routine annual physical that I got last January.  I went in early to do my blood work, and when I showed up for the exam a couple weeks later my internist told me that my lymphocytes were slightly elevated, and I emphasize slightly, and my neutrophils when a little low and that she would like me to come back in three weeks and test again because it was right after the holiday and I'd been with my grandbaby at the time and she was thinking that maybe I picked up some kind of virus. 

So I went back and, sure enough, got a call phone call on a Friday night from the doctor herself, and as our doctor friends know that's usually not good news, that phone call.  So she said the numbers hadn't changed and that now they were seeing some smudge cells on the slide, which was indicative of CLL.  So two weeks later I find myself at an oncologist's office.  I was getting a flow cytometry test, and that confirmed the diagnosis. 

Andrew Schorr:

Okay.  Now, you had never heard of this. 

Cathy Hamilton:

Never heard of CLL.  But leukemia put the fear of God into me, I'll tell you that.  That word was frightening.  I just didn't realize at the time that there were acute kinds and chronic kinds and was relieved to find out that I had a very slow-progressing indolent case so far. 

Andrew Schorr:

Right.  And that's true, and I have to tell you there's some people, me included, back in 1996, I wasn't really clear that leukemia was a cancer, right?  And then you talk about acute, chronic, is it this type, is it that type, is it indolent.  Okay.  So we're going to continue.  But first, Phil, you have had to give that bad news to people who have no frame of reference, maybe were referred to you from their general practitioner.  And I know when I walked into MD Anderson I had never been into any oncology clinic, floor, office.  It was like a terrifying stranger in a strange land.  So, first of all, how do you explain this to people, first, what they have? 

Dr. Thompson:

Yeah, so I think what you're saying is true.  I think people come in with an image in their head when they hear the word leukemia or of people with no hair, horribly nauseated, vomiting, you know, IV lines, terrible quality of life.  And I think one of the things I try and do is dispel as much as of that as quickly I can.  Also, people tend to come in terrified that they're about to have a bone marrow biopsy and all sorts of other tests.  So I try and kind of put people at ease, tell them that we're not going to be doing all these things before we start so that people can hear the rest of the conversation. 

Andrew Schorr:

Yeah, and I know I didn't hear much.  I was on the—not on the floor, but Esther, my wife of 33 years, we were in tears.  And, Cathy, what about you?  Did you hear everything the doctor said? 

Cathy Hamilton:

No, I didn't.  My internist had warned me that she thought this was what it was because I always ask.  As a former reporter, I suppose that's where this comes from, like, okay, what's the worst?case scenario.  Tell me now so I can Google it, which isn't necessarily the most calming thing to do, but that's how I operate. 

So I didn't hear everything.  I did hear that there would be no treatment, and that was confusing to me.  It's sort of a good news/bad news situation because any time you hear the word cancer you think, well, let's just get it.  Let's just attack it.  Let's throw everything we can at it.  But in this case it was no, we're just going to sit back and so see what happens.  So from my personality type that was a little bit hard to take. 

Andrew Schorr:

Yeah, me—well, actually I wanted to forget about it.  So if I could forget about it for an extended time, because I felt good.  So, Jackie, how do you explain to patients whether you or one of the physicians based on the test results and everything tell somebody sitting across from you they have CLL, but we're not going to do anything right now?  You've heard the same confusion that either I have had or Cathy's had.  How do you explain that to people?

Dr. Broadway-Duren:

Basically, as Phil stated, when people hear the word leukemia they immediately look at worst-case scenario, which is generally acute leukemia.  So the first thing is to help them understand the nature of the disease, the nature of their diagnosis.  And secondly, to sit down and review what those prognostic indicators mean, both the purpose of doing those and how those will determine at what point we think treatment may be indicated. 

So I—we generally spend a lot of time going over lab work and particularly the FISH test, the gene panel, and so it's important for the patient to understand there are certain prognostic factors that have a positive connotation while others suggest more aggressive disease.  So I think when you can show them something visually as you're explaining the watch and wait, I that help to calm the patient and kind of allays their fears, and they are more willing to consider watch and wait at that point. 

The other thing I think is they have to—it's very difficult for patients to differentiate CLL versus lung cancer, whatever, because, as you stated, they want to get some treatment.  They want to do something right now, and they want to know that it's there.  So it is sometimes difficult to get them to understand.  Yes, you have leukemia.  No, we don't need to do anything, and it may be some time before you will need anything if you need any treatment at some point in time. 

Andrew Schorr:

Right.  So, Phil, let's understand.  What is the rationale among you CLL specialists why not to treat on day one?  How come? 

Dr. Thompson:

Yeah, so I think that the idea that you need to get cancer early, treated early comes mainly from solid tumors.  And so, if for example you have bowel cancer and you discover it when it's small and it's localized to the intestine, then you can surgically removal it and you're done.  Never have to have any treatment other than that initial operation because it's only located in the one place. 

Now, CLL is a very different beast, because at the earliest stages of the disease it's everywhere in your body.  It's circulating around in the blood.  It's within lymph nodes.  It's within lymphatic tissue that's present in organs in your body.  It's in the bone marrow.  So there's no quick fix that you can do at that early stage so that it's gone forever and you don't have to worry about it. 

So with a few exceptions what you're doing is managing a chronic disease.  And so when you're managing a chronic disease you have to weigh off I guess the risks of treating the disease and toxicities that are associated with treatment versus the risks of doing nothing.  And sometimes for patients, well, very often for patients with very early-stage CLL you can watch them for many years.  They don't have any symptoms related to the disease.  The disease is not causing them any harm.  And if I were to give a treatment to that patient that would have a—that they could potentially have a significant side effect, I may be doing more harm than good by doing that. 

Andrew Schorr:

Or costs, as we look at some of the new therapies. 

Dr. Thompson:

Well, there's that as well. 

Andrew Schorr:

Okay.  So I have one other follow-up question for you, Phil.  And that is is there a price to pay, though.  So for instance have I had a tougher CLL journey by waiting four and a half years, and it proliferated to a certain point.  My white count got to 253,000 and I had the swollen lymph nodes and my spleen got enlarged.  Is there—while letting more cells circulate, if you will, do we ever recoup from that, or was it just this balancing act you were talking about? 

Dr. Thompson:

Yes, so that's a—I mean, that's a really good question, and there's probably not super robust data to actually answer that.  You know, in the past the studies that were done to try and determine is it better to treat a patient earlier were done with pretty ineffective drugs like chlorambucil (Leukeran), for example, which is really completely outdated therapy now, and it never got rid of all of the CLL.  So exposing a patient earlier to the drug just meant that you had to maybe potentially use it more times. 

Now, if we look at sub-groups of patients who may be potentially even cured by treatments like FCR, then you can make an argument that if, well, if we know we're going to need to treat you then maybe we should do it a little bit earlier before you get really sick, and perhaps if there's less of a disease when we treat you we could do better.  We don't actually have data that tells us that that's the right approach.  So really there are a number of clinical trials that are being done looking at earlier therapy with a number of drugs that are, I guess, less toxic than FCR.  So it will be interesting to see how those play out, I think.  But it is a very good question. 

One thing I do with patients is that not all watch and wait patients are the same.  So some watch and wait patients might have a white count that's just above normal, they don't have any lymph nodes.  When we do the genetic profile of their CLL it looks like what we call favorable genetic profile. 

And then on the other hand, you may have some patients who are in watch and wait where every six months or every 12 months their white count doubles, they have lymph nodes that are growing, and so even though they may not meet formal treatment criteria you can clearly see they are progressing and they may be progressing relatively quickly.  And in that setting sometimes we don't wait quite until they meet those formal treatment criteria.  We may say, well, that's where the art comes in.  We say, we know you're going to need treatment in six or 12 months, why don't we just get started now.  But you don't want to do that in a patient who could go 10 years without needing therapy, if that makes sense. 

Andrew Schorr:

So, Jackie, so that goes back to you.  So you take a look at these test results with your patients and you help them understand, and then for follow-up visits you're discussing with them the change or not and the rate of change and what that's telling you, right? 

Dr. Broadway-Duren:

Correct.  And as an afterthought from the first question, another thing I think that helps people to understand the watch and wait is that I first try to help them understand this is a chronic disease, and the CLL was there likely years before they were ever even diagnosed.  So my point to them is there's no urgency today, because this is a chronic disease, so you're just getting the diagnosis now. 

But on subsequent visits when the patients come in, we do a very thorough physical exam on them to check lymph nodes to see if there's been any advance in the size of the nodes or the liver or spleen, and we again review the labs very closely when the change is in the absolute lymphocyte count or hemoglobin and platelets.  Those are indicators that would indicate to us whether the patient is progressing. 

Andrew Schorr:

Cathy, let's see if you're willing to share a little bit for you, and we're going to discuss how it's different for everybody.  So when they did your blood test, do you recall what the white count was initially, the white counts? 

Cathy Hamilton:

Yes, so I would just say I'm the first patient that Dr. Phil—sorry, Dr. Phil—mentioned.  I had a very low white blood, I mean, relatively speaking my white count at the start was just 12.8, and at my last follow-up it was down to (inaudible).  So, again, I have a just a smidge of CLL I call it.  I'm not symptomatic.  They were just—they were high enough for someone to sound the alarm, but really it's not that I've been told I have the good kind of cancer, but I have been told I'll probably die with it, not from it.  I don't know what consolation that is, but, you know, my numbers are not that scary. 

Andrew Schorr:

And how often do you have a blood test? 

Cathy Hamilton:

Well, I'm not going back until May now because I'm going to have my blood checked at my annual physical.  So it was three months, then four months, and now it's not until May at the oncologist's office. 

Andrew Schorr:

Okay.  And have you had this, Jackie referred to, this FISH testing or any of these other more sophisticated tests? 

Cathy Hamilton:

Not yet.  That's in the plan for next year.  I had a very positive I think it's called CD38 marker from the flow cytometry test that he said was really good prognostically, but that's really all I know.  I'm just kind of—I'm just spreading out the expense part of it. 

Andrew Schorr:

Right.  And you've had a bone marrow biopsy or not. 

Cathy Hamilton:

Not. 

Andrew Schorr:

Okay.  All right.  So we're going to go on.  Oh, swollen lymph nodes or night sweats? 

Cathy Hamilton:

No, and that's what I was told my by oncologist.  I want to hear from you immediately if you have drenching night sweats, debilitating fatigue, swollen lymph nodes.  He checks my spleen and all my lymph nodes every time, and so far so good on that count.  I will say I do intend to find a CLL specialist.  There doesn't happen to be one in my area. 

Andrew Schorr:

You have two on camera with you right there. 

Cathy Hamilton:

I know, so I'm pretty much halfway between MD Anderson and the Mayo Clinic, and then my son just moved to Denver and I know there are a couple of experts out there.  So my big thing right now is trying to figure out where I'm going to live in retirement and then finding a CLL specialist close, so that's going to take about a year to figure out. 

Andrew Schorr:

Yeah.  And I'll just mention for me.  So I'm living with two blood-related cancers, CLL, which I've been treated for twice, and so I chose to be in San Diego to be near Dr. Tom Kipps of UC San Diego.  I have another condition, myelofibrosis, and at that same center they have a specialist in that.  So that's kind of where I chose to be living my Internet life here with Esther.  

So one other question for you, Cathy, and then I want to probe our medical experts further.  And again send in your questions to cll@patientpower.info. 

And that is so you've been told there's like a scent of smoke in your kitchen somewhere but there's no fire and you don't have to worry about it.  How have you coped with that? 

Cathy Hamilton:

Well, I wasn't ever going to be happy with sitting around doing nothing, so I really did take—I read up a lot.  Patient Power, I have to say, brought me up the learning curve—which is very steep, by the way—it brought me up that curve very quickly.  And I am grateful to you and Esther and your whole team for that because I think it would have taken months without the internet to think about what I was looking at. 

And I just decided to make some lifestyle changes that I thought would just make me healthier in general and perhaps fend off those secondary cancers that we worry about when we have CLL.  So I had all my necessary screenings done and I switched my diet and I started to exercise more faithfully.  I'm taking a couple of supplements, not crazy stuff, but I just got healthier. 

Andrew Schorr:

Sunscreen, although more for me in California than you in Kansas. 

Cathy Hamilton:

Oh, I've had precancers frozen off my face.  I went in immediately and had a full body skin check.  I had a mammogram that I was about nine months late on, and I'm getting a colonoscopy on schedule next year.  So those are just the kinds of things that—I don't think watch and wait means doing nothing.  I think you can do things to make yourself healthier in general and just be more proactive, and I think that gives you a sense of control and empowerment versus just wait to see what the universe is going to deal you, you know. 

Andrew Schorr:

By the way, Cathy has done a little program for Patient Power where she takes us through her routine including her exercise TV, bouncing at the TV on your little exercise ball and all that stuff. 

Cathy Hamilton:

I don't know why I sent you guys that video, but I bounce on the stability ball to keep my lymph system going. 

Andrew Schorr:

Okay.  So, whatever.  So, Phil.

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Page last updated on December 13, 2018