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What CLL Patients on Watch and Wait Need to Know Right Now

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Published on June 26, 2020

What CLL Patients on Watch and Wait Need to Know Right Now

Do chronic lymphocytic leukemia (CLL) patients in the watch-and-wait stage have different COVID-19 risks than other patients? How long can they stay on watch and wait? If they do end up needing treatment, should they proceed during the pandemic?

In this segment from a recent CLL Answers Now program, host Andrew Schorr gets the answers from two noted experts, Dr. Nitin Jain of the University of Texas MD Anderson Cancer Center and Dr. Alexey Danilov from City of Hope. They discuss prognostic tests, disease progression and treatment options. Tune in to learn more.

Although this is a sponsored program, Patient Power maintains editorial control and is solely responsible for the content of this program.

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Transcript | What CLL Patients on Watch and Wait Need to Know Right Now

Andrew Schorr:
Long term survivorship. So, some people have been in that watch and wait stage for years and years not knowing, is another shoe going to drop? So first of all, if they've not had any CLL treatment but they're being monitored and they do have CLL, are they in a different category? That's the first thing. Should they see themselves differently?

Dr. Jain:
Differently in terms of, I guess, the risk of infections, you're saying, or?

Andrew Schorr:
Yeah.

Dr. Jain:
So I think certainly, if you haven't had treatment for your CLL and you have just been in watch and wait, I think the general thinking is, most of those patients are doing well, they usually don't get frequent infections in general. And we see them in the clinic many times, once a year actually, especially patients who have been in five, six plus years in observation. And most of the time they're not reporting any major issues. So I think their immune system is better preserved than a person who had for example, FCR or some chemotherapy or some treatment for their disease. I would say that their immune system is still not normal but I think they're certainly not as immunocompromised. So I think in terms of the COVID restrictions, still I would advise, again, given the lack of medical data, to follow the other guidelines which we just talked about for CLL patients in general even if you have not received treatment for your CLL yet.

Andrew Schorr:
One other question and again, this is the long view of CLL for you, Dr. Jain, can someone who's been in watch and wait for an extended time — I mean, maybe even more than 10 years — can it become active at any time? In other words, if you're like Nick, he had treatment and then long term remission but let's say he never had treatment, does it remain smoldering and never go somewhere or there's some people where it flips at some point?

Dr. Jain:
Yeah, I mean, so certainly there are patients... I think, in some sense, there are patients. I just saw a patient the other day who was diagnosed just around year 2000 and came once a year and this is his 20 year anniversary in terms of not needing treatment. So that, obviously, is a very positive thing. But certainly, I think we have patients in the clinic who were doing well for first maybe five, 10 years and then their disease has started to take off or their disease has started to progress a bit. So I think, the longer you go, maybe the less risk you have. It's only the time to treatment for newly diagnosed patients on an average could be five, six years but again, that's an average. There are patients more than that, it could be 10 years. But certainly, I think it's not 100% that if you have not needed treatment that you will not need treatment forever. No, certainly some of these patients may need treatment. But again, the observation for these patients at least in our practice, if they have been really doing well, 10 years plus, many times we see them once a year, as I said, hoping that nothing really major will change at that time.

Andrew Schorr:
Dr. Danilov, so we had a question people were asking about. Where are we now with tests to predict outcome? So we talked about MRD testing, other testing... You get this question all the time. Well, in acute cancers and maybe in CLL as well, when someone's newly diagnosed, people say, "Well, doctor, how long do I have? Well, how long will this treatment be successful?" So Dr. Danilov, tell us about monitoring and how you get prognostic information from that.

Dr. Danilov:
Right. Nothing is absolute. And a lot of the data that we have is based of thousands of patients. So when you come down to an individual, it's very difficult to commit to a number in terms of, how long this treatment is going to work for. But we can have some idea based on the prognostic features that we use in CLL. And first and foremost is what Dr. Jain has already mentioned, it's the FISH testing for cytogenetic abnormalities. And I cannot stress enough the importance of performing that test every time before treatment is being administered. And like Dr. Jain already mentioned, for example, deletion 17p renders somebody really not a candidate for chemotherapy. Well, at this current European Hematology Association congress, there was actually an interesting poster by Dr. Anthony Mato where they analyze some database data and found that in the era of novel therapies, use of FISH testing has declined. Because it is true that those normal therapies work well across many subtypes of CLL but also some of these patients did still get chemotherapy. I have to say, we even have to rely on our patients to ask for this test. So, using FISH cytogenetics is highly important and can be predictive of outcomes.

Then there is another indicator such as IgHV mutational status. And in the chemotherapy era, folks with unmutated IgHV responded less well to therapy or relapse sooner. It seems that also maybe true with venetoclax (Venclexta) combination. So far, with BTK inhibitors, the outcomes are very similar between mutated and unmutated IgHV. And also at larger centers like ours, on every patient that comes to my clinic, "I'm ready for treatment", I do perform next generation sequencing. Because that way we can also find some high-risk mutations for example, TP53 - which again, renders the patient not a candidate for chemotherapy. Notch mutations, that really does help predict response to therapy over the next several years and better plan the next steps.

And then an important factor, of course, is other medical conditions or comorbidities. And we have published several papers on how comorbidities potentially affect therapy with ibrutinib (Imbruvica) or with idelalisib (Zydelig). So, looking at those other conditions also helps determine what we can expect. Now again, raising the issue of minimal residual disease, I have to say that in my practice I do not use it outside of clinical trial unless there is a very particular specific situation because I end up to tend to not make clinical decisions based on MRD outside of clinical trial. But yes, this test will be predictive of efficacy of treatment once the treatment is complete. How well did it work? So, there are many factors which go into consideration when we try to understand and help patients understand what will happen in the future.

Andrew Schorr:
Okay. So Dr. Jain, is there a testing that's going to tell you that something is going to change with someone's CLL? Is that the FISH testing we're talking about or the genomic testing that Dr. Danilov? Something's going to flip, something's going to become more aggressive. Or is it just whether somebody is having symptoms?

Dr. Jain:
So, as Alexey pointed out, some of these things we check and many times we check it again and again before needing any treatment is like, testing for FISH for deletion 17p or checking the mutation analysis for different mutations like p53, NOTCH1 and other mutations. Because if you give, for example, someone chemotherapy, for example, FCR or bendamustine (Bendeka) – rituximab (Ritxuan) or some chemotherapy, you probably didn't have that mutation or abnormality before but when the disease comes back five years later, you may have gained that abnormality, acquired that abnormality. So, we call it clonal evolution. So, the cancer clone has evolved.

So, with that argument in mind, I think it's very important to check that again, even if it was negative before, at the time of the patient needing therapy so that thing can't evolve. One thing which generally does not evolve over time is the IgHV mutation status. So that's what we call it IgHV mutated or unmutated. So that typically and practically, I think, stays the same forever in your treatment lifespan. So there is no need to check that again. In fact, in our lab, if we send that assay again, our molecular lab will reject it and say, "Oh, this patient had it five years ago, why are you checking it again? We won't do it." But rest of the things, the FISH panel, p53 mutation, those are the two important ones, it should be repeated before every treatment because that can change.

Andrew Schorr:
Okay, so let's pull all this together.

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