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What Tests Should Chronic Lymphocytic Leukemia Patients Take?

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Published on December 4, 2019

Key Takeaways

  • Tests recommended for CLL patients.
  • See a specialist prior to starting treatment.
  • Additional tests may be ordered based on symptoms.

Experts Dr. Farrukh Awan and Dr. Nicole Lamanna joined Patient Power at a recent Town Meeting in Arlington, Texas to discuss the recommended tests for newly diagnosed chronic lymphocytic leukemia (CLL) patients and when additional testing is necessary. Watch as the CLL experts share the key tests to have prior to getting therapy, and suggested frequency of CLL imaging and scans. 

This program is sponsored by AbbVie Inc., Genentech, Inc. and Adaptive Biotechnologies. These organizations have no editorial control. It is produced by Patient Power and Patient Power is solely responsible for program content

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You share your lives, your thoughts, your time. I am overwhelmed by all the help I have received to help me understand this disease. I can't thank you enough!

— Mary Ellen, CLL Survivor

Transcript | What Tests Should Chronic Lymphocytic Leukemia Patients Take?

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.

Carol Preston:            

What testing actually is needed? There are an array of tests; does every patient need every test?

Dr. Awan:                  

Thank you for the question. I think that’s the biggest issue that we deal with on a daily basis, it’s a great one, we’ll talk about the treatment options and how they’re evolving, but for the vast majority of patients that I see in my practice are patients who have CLL that is newly diagnosed. There’s a lot stress with the diagnosis; there’s a lot of anxiety associated with the disease, and you know the big C word, and you don’t know what that means. What is a leukemia, what is a blood cancer, am I going to die? There’s a lot of that that we have to deal with, so I think, for me, the biggest challenge is, is the emotional connection with the patient and trying to make sure that the patient is comfortable when they see us.

So, I’ve been here a year now in the Dallas area, and I’ve been doing CLL for almost more than 10 years now, so I’ve noticed that a lot of my patients don’t even have the basic testing done that would a) confirm the disease and tell you what type of CLL you have. Because we’re not dealing with one single homogeneous disease that every patient’s going to be the same. Not everyone would need X, Y or Z things for treatment, or diagnosis, or prognosis. Every patient is unique, and how do you tell that, how can you figure out that this person is going to behave one way, and this person is going to behave one way?

The other question we ask is, how often should we see a new diagnosis patient, should we see them every three months, should we see them every six months, or see you in a year? So, those are big practical questions that the patient wants to know that I talk about when I see the patient for the first time. From my personal experience and from the experiences that Nicole and Phil, already published before, and the real-world experience is that the vast majority of our patients don’t get a FISH test, which is extremely important. We start off with a test called the flow cytometry just to diagnose if you have CLL or not. Most of my patients come with that, that’s how they make a diagnosis, or they have a high, white count.

We don’t need to do bone marrow biopsy for the vast majority of our patients; a lot of our patients have circulating disease. Which means they have disease in the blood, which allows us to get access to enough cancer cells to do all of these genetic testing. So, do I do a bone marrow biopsy on all my patients? No. But there are certain reasons why I do want to get a bone marrow biopsy, and those are very specific reasons, which is what the doctor would have to decide if you have these issues.

If I’m suspecting something else or if there’s a particular situation which I feel would allow me to diagnose the patient better, those would be the reasons to do a bone marrow biopsy.                   

I think we have a huge, huge room for improvement in this sphere. So, FISH testing is just one test, number one you have to have the FISH for acute leukemia is different from lymphoma, from CLL. And you need to have a specialized CLL lab which is available in a specialized CLL center. So, unless you have that, you run into these situations where every test has a cutoff; 5 percent, 4 percent, 10 percent depending on the sensitivity depending on the different test characteristics. So, you really want to go to a CLL specialist center where the labs are set up to do the testing the proper way; because there’s a lot of technical things about the CLL cells, which we have to do to make sure we get the best results.

It’s an irony; it’s very, very unfortunate that 50 percent of our patients in this country, which reportedly has one of the best healthcare systems in the world, 50 percent of patients for CLL don’t have FISH testing, ever. Which is…

Carol Preston:            

One in two.

Dr. Awan:                  

…it’s unbelievable to imagine why that is when it's easily available, every insurance pays for it, there shouldn’t be a problem, you can always find a good lab even if your hospital doesn’t do it, you can send it to a CLL lab—50 percent of my patients don’t have it done, FISH changes with time, it might need to be done at multiple times during the course of your disease, less than 50 percent of the patients have it done multiple times. IGHV is another test that is done once, and if you’re either mutated it means something else; if you’re unmutated, it means something else. That doesn’t change; it is the single or one of the very important testing for CLL.

How many patients get it done? Less than 10 percent, TP53 mutation analysis, I’ve seen 100 patients in the last year in the Dallas area. How many of my patients had TP53 mutation analysis that Carol got partly referred to? Do you know how many? Zero percent.

Dr. Lamanna:             

I think it’s absolutely important if somebody says you need treatment, or this is your first treatment, that is really a key point to seek consultation. Because what Farrukh was saying is absolutely true, because to make sure that some of these testing is performed at least prior to—you know the international colleagues, and I go back and forth; and all of us go back and forth because they may not—there is a sense of anxiety by knowing the results of some of these tests. And we shouldn’t be acting on these tests either, in other words, so if somebody has a 17p deletion, or they’re unmutated some of these things that we’re going to refer to during this session, just by knowing that doesn’t mean you necessarily need treatment,

So, there is a sense of anxiety that can come with these prognostic markers; but that doesn’t mean everybody requires therapy just by knowing what you are on the scorecard, so to say.

So, prior to getting any therapy, it is absolutely essential to have this testing done, because it may influence your treatments. And so that’s what when we talk about CLL specialists and seeing somebody, we realize across the country that’s not a possibility. Like Farrukh said, there’s lots of different ways to get access to all of us, so I think that’s important to keep in mind. So, certainly if you don’t have that testing done, that initial presentation, although all of us would like that, certainly prior to getting any initial therapy, we think it’s strongly we absolutely recommend it and we think it should be standard of care; and in addition to educating you all we’re trying to, obviously, educate doctors in the community to learn about this as well.

Because it’s a rare disease. We realize that you guys are rare individuals, and that’s why we’re all here, that you’re special.

Dr. Awan:                  

Special!

Dr. Lamanna:             

Now, in terms of testing, the other big thing that comes up before we get to MRD is images. So, let’s talk about CAT scans or ultrasounds, X-rays things like that. So, typically, we do not traditionally recommend routine CAT scans for patients with CLL. So, if you are—because remember hopefully as we all examine our patients, we can feel who have lymph nodes—most of the time, what’s going on, on the outside is usually mimicking what’s going on in the inside. So, unless there’s symptoms—symptoms can drive imaging, so if you’re not feeling well or there’s something bothering you, you have abdominal pain or discomfort, absolutely I think that’s appropriate. 

But just routine imaging all the time to look and see if the lymph nodes have grown; that’s a little bit of a dangerous catch because if your lymph node—let’s say a lymph node grows from one centimeter to two centimeters, that’s 100 percent growth, oh my Lord are we going to do something about this to intervene. And we don’t want doctors necessarily intervening depending upon that sort of measurement. So, routine imaging is not something we typically do; it should be driven by symptom.

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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