Are There Symptoms a CLL Patient Can Recognize to Know Their Disease Is Progressing?

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Dr. William Wierda, a world-renowned CLL expert from MD Anderson Cancer Center in Houston, provides an explanation of how active disease and progressive disease is determined and how this information is used to plan for treatment. He also outlines the symptoms that patients should monitor and share with their doctor to know when their disease is progressing.


The Ask the Expert series is sponsored through an educational grant to the Patient Empowerment Network from Pharmacyclics, Inc.

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Jeff Folloder:

Here's a great question along those lines.  Are there some early symptoms that a patient can recognize that lets them know that their disease is progressing?

Dr. Wierda:

So when we evaluate patients and are monitoring patients, one of the questions is does a patient have active disease or progressive disease, as you indicate.  That's important because it's at that time when we start talking to patients about treatment and planning for treatment.

The parameters that we use to determine whether or not a patient has active disease or progressive disease are the indications that we use to start treatment, and we're still holding to those indications.  There haven't been any clinical trials that have shown that early treatment, before patients develop these indicators of active disease, early treatment doesn't improve overall survival compared to waiting until they do develop indicators of active disease.

And I think it's also important because—to remember that because there are patients who never need treatment.  So if you act on early treatment and a patient doesn't need to be treatment—treated you may be doing that patient a disservice by treating them when they could have 10 or plus or more years of treatment-free, a treatment-free period.

So, again, I'll review the parameters that we look at to assess disease activity and whether—assess whether or not a patient has active disease.  Those are generally symptom related.  So if patients develop night sweats or if they have fever without evidence of infection, if they have unintentional weight loss or fatigue, those are the four big symptoms that we look for.

In order for them to be indicators so initial therapy for me, and I'm relatively conservative, they have to be significant, and they have to sort of impact the—your daily life or you daily activity.  So fatigue where you're not able to do things that you were doing six months ago, reactional things, if you're a regular golf player and you're--if you're a regular player of golf and you're not doing that regularly, I think that's an important feature to discuss with patients and to use as a consideration point for talking and starting to think and plan for treatment.

Night sweats have to be significant.  Night sweats, drenching night sweats, they have to occur with some regularity, that is, once or twice a week.  The weight loss is relatively rare, but it can occur, and fever also without infection is an unusual reason to start treatment.  But those are the symptoms that we look for that suggest disease activity or active disease.

Nothing happens usually in CLL rapidly or quickly, so these symptoms will come on gradually and will crescendo over time. And the time frame is variable between patients during which their--the symptoms may be escalating, but it's usually on the order of months or a year or two.

The other features that we look at in terms of disease activity or features that may indicate disease activity are the blood counts.  We expect the white blood cell count to go up with time without any treatment, and how quickly that count goes up does reflects the activity of the disease.

So if the white count's rapidly rising, doubling in every six months or even less than a year that's an indicator that there's some activity with respect to the disease and progression of the disease.  And those are patients if their doubling time is less than a year, then I'm thinking, okay, this patient is going to need treatment in the not-too-distant future.

Other features that we assess for disease activity are dropping hemoglobin.  So if patients begin to develop anemia, their hemoglobin is consistently down each time that they come in for a visit and have their blood counts done or if the platelet count is dropping.

And again, as I mentioned, things don't happen quickly in CLL.  They happen gradually, and they happen over months to even years. So for me, I don't get excited about one blood count or one time point.  For me, it has to be a consistent observation of a change.  So the white count will fluctuate with time.  Sometimes it's a little bit higher than we expect it, sometimes it's lower than we expected, and, again, I usually will repeat the count to be confident that the trend is real so—and there usually will be a month or two between those two counts.

So if a patient comes to see me and they have a white count that's higher than usual, I'll say, okay, well, let's have you come back in three months.  We recheck it and see if it's really an issue.

If the hemoglobin drops below 10 or 11, that's when I start talking to patients about starting treatment.  If the platelet count drops below 100, I start talking to them about treatment.

So those are sort of the indicators that we look at for disease activity, and also they tie in to the things that we use to initiate treatment for patients, first-time treatment or treatment for relapsed disease. So patients may have their disease come back after they go into remission the first time. And as soon as we identify that there's disease there, we don't necessarily have to jump to treatment.  We do typically have a period of observation until patients develop indicators of active disease before we start them on retreatment.

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.

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Page last updated on July 10, 2014