What Factors Influence CLL Treatment Decisions?

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How is the pace of change monitored in chronic lymphocytic leukemia (CLL)? What changes in disease behavior indicate a need for therapy? A panel of renowned experts, including Dr. Susan Leclair, from the University of Massachusetts, Dartmouth, and Dr. Philip Thompson, from The University of Texas MD Anderson Cancer Center, discuss what is observed in newly diagnosed patients, the spectrum of high- and low-risk CLL characteristics and how treatment decisions are made. Tune in to find out more.

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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:

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.   

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. 

Some patients will come to see you and their white count will be just above the normal range, and they'll have absolutely no symptoms, and it will have been picked up on a routine physical assessment.  And in that case, it's likely that you could observe that patient for many years though they won't develop symptoms, they won't develop low blood counts, and their white count may remain stable.  

And then there's the complete opposite end of the spectrum.  For example, I met a patient once who had a white cell count of over a million, and he had a spleen that was almost into his pelvis, and he had very advanced CLL.  And in that case—he was anemic and a low platelet count.  In that patient, I didn't need to observe for any period of time to know that watch and wait is not going to be appropriate.  But then there's everything in between.   

But for a patient who is newly diagnosed and maybe isn't going to need treatment straight away, you don't necessarily have to do a lot of tests to look at the genomics of CLL because I guess there are two ways that you can work out what is going to happen to this patient's CLL over time.  The first is you can watch it over time, but that's not going to allow you to give any information to the person right now.   

The second is you can have a look at what are the genetics of this CLL, because that can give you a good idea about what might happen in the future.  It's not perfect, but it gives you a much better idea about what will happen to an individual patient because there's a huge spectrum of changes that you can have in CLL where the cells look the same but genetically they're completely different, and they behave differently, and they respond to different treatments differently.  

But we can get a lot of that at diagnosis just with some simple blood tests, and it allows us to give a patient a lot more information.  So when they come to see me it's usually because they want the most information, and so we often do all of these tests at diagnosis, and that allows me, I guess, to counsel people as best—to the best of my knowledge, this is what is likely to happen in the future.  

Those tests, we look at the chromosomes of the CLL.  So everyone has 46 chromosomes.  You get 23 from your mother, 23 from your father.  And in the CLL cells you can have missing pieces of chromosomes or a whole extra chromosome, and the knowledge of that can help you determine is this going to be an aggressive CLL or a stable CLL.  

We also try and divide CLL into two groups.  One is called unmutated CLL, and the other is mutated CLL.  

And that mutated or unmutated refers to what we call the immunoglobulin heavy chain gene. "Immunoglobulin" is another term for antibodies, and antibodies is something that your normal immune system uses.  In the normal immune response your B cells try and make the best possible antibody to fight an infection, and by doing so they actually mutate their immunoglobulin gene. 

So a CLL cell can arise from a B cell that's previously fought infections and has a mutated immunoglobulin gene, or it can come from a B cell that's kind of newly born or naive, has never fought an infection before, and that's what we call an unmutated immunoglobulin gene, CLL.  

Now, counter-intuitively it's usually better to have a mutated CLL.  People think, oh, mutated, that must be bad.  In this situation an unmutated CLL has the potential to grow much quicker than a mutated CLL.  

And also they have a slightly different response to treatment, which we might talk about later.  

And the last thing we can do is there's a huge array of knowledge that's come about from gene sequencing tests that have been done over the last seven or eight years, and we now know a number of gene mutations that can happen in the CLL cells that can drive their behavior.  And we have a standardized test where we look for 29 of these mutations at MD Anderson, I mean, most of our newly diagnosed patients and anyone who is about to have treatment, and that can kind of give us additional information about how the disease is likely to behave.   

So we can get, I guess, in a snapshot of time a lot of information about the CLL cells and how they're likely—how that patient's disease is likely to behave over time.  

It can vary from patient to patient even with similar genetics.  Because maybe those don't give us every bit of information, but they can be very useful.  

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 May 23, 2019