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Does CLL Run in Families?

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Published on July 15, 2020

Is there a Hereditary Risk to CLL?

In this podcast from our CLL "Dinner with the Docs" series, Carol Preston talks to Dr. Rajat Bannerji, chief of Hematologic Malignancies at Rutgers Cancer Institute and Dr. Robert Grossman, a hematologist at RWJ Barnabas about whether CLL is hereditary and issues regarding time-limited treatments.

This program is sponsored by Janssen Oncology and Pharmacyclics LLC. These organizations have no editorial control. It is produced by Patient Power. Patient Power is solely responsible for program content.


Transcript | Does CLL Run in Families?

Carol Preston:
Hi, everyone. I'm Carol Preston with Patient Power. I've been living with CLL for 14 years. The COVID-19 pandemic shut down our plans for the in-person Dinner with the Docs in North Jersey. Well, while we couldn't shake hands or give hugs, an online forum provided an intimacy that might not have happened face-to-face. Dr. Rajat Bannerji, Chief of Hematologic Malignancies at Rutgers Cancer Institute, and Dr. Robert Grossman, Hematologist at RWJ Barnabas in North Jersey, shed light on whether CLL is hereditary, as well as which treatments may allow patients at some point to stop their medication.

I did want to ask you about the hereditary nature, or does that even exist? Dr. Bannerji?

Dr. Bannerji:
Yeah, so we know that patients with CLL, their first-degree relatives do have a higher risk of developing CLL, about a threefold higher risk, but it's not anywhere close to the risk of, to give something analogous, a genetic cancer syndrome like BRCA, you know. So with CLL, we don't know if that elevated risk. It's certainly not a single gene. There's no CLL gene that a genetic counselor would screen for that tracks through families, but we also know that CLL is the most common leukemia that we see, at least in people of European background. So whatever those factors are, there is a slightly higher risk in first-degree relatives than not. And I do have various permutations of first-degree relatives; siblings, parent, children, with CLL, but that risk is only slightly higher. It's not an inherited syndrome of that I know of. There's nothing that we would track or look for.

Carol Preston:
Dr. Grossman?

Dr. Grossman:
When we take the history, we see if there's a familial component if a parent had it, and I have several patients like that, but there's not a screening that we recommend for family members or for their children.

I think one of the other things that's very important that I see, there's a wide range of risk in CLL. There are patients who will have a low-risk CLL and they have it for years without progression. There are patients who have high-risk features that may progress very quickly, and you may see this population for a long time in your practice. Rajat will see more patients that may be on the clinical trial, maybe more of the high-risk patients.

CLL carries with it an increased risk of second malignancies. So you may be fine from the CLL, but you have an increased risk of solid tumor. And what I've seen over the years is patients who are fine with their CLL may have prostate cancer or lung cancer or pancreatic cancer. So you need to have your regular cancer screening. You need to have the colonoscopy. There's nothing that you would do to prevent these things, but make sure that you go through your regular cancer screening. You can also have skin cancer. So have your colonoscopy, check your PSA, go to the dermatologist. That's all very important in CLL.

Carol Preston:
So this is a really interesting question because it leads to the topic of time-limited treatments, i.e. can I get off these drugs? There's a question from one of our audience members who's been on venetoclax (Venclexta) for two years, and what this person is asking is to whether there's an estimate on the five-year drug data will be released to the oncology community?

Dr. Bannerji:
With studies now, the question is time-limited treatment and is that viable. Combinations that people are looking at include combining venetoclax with one of the BTK inhibitors, for example, ibrutinib (Imbruvica). Or combining one of the oral therapies with an antibody, so, for example, ibrutinib with obinutuzumab (Gazyva). Or combining everything together, so ibrutinib, venetoclax and obinutuzumab. There are a number of studies with those pairings and triplets going on. Some are through pharmaceutical companies. So, for example, the company Pharmacyclics has a large study going on combining ibrutinib with venetoclax. The academic groups have a study going on. So in younger patients with CLL, the ECOG, the Eastern Cooperative Oncology Group has a study going on comparing ibrutinib plus Gazyva versus ibrutinib, venetoclax, Gazyva in a very similar design in older patients through a group of institutions call the Alliance Cooperative Group.

So we'll have to wait for all of those studies to report out their data to see if the time-limited treatment is effective. Now, we have seen data from what we call phase one studies, so early studies actually from MD Anderson, as well as from the UK, making combination of ibrutinib and venetoclax, and then limiting the period of time patients are treated to a year and a half, and looking at things like response rates. So that's what the doctor can measure with CT scans, bone marrow biopsies and blood tests, and also looking at this idea of minimal residual disease (MRD). And what that means is, typically with the assays we have now, the sensitivity is can we detect a single CLL cell or the evidence of a single CLL cell in a background of 10,000 normal cells? So this is a more sensitive test than our typical CT scan and bone marrow biopsy.

So we know that the time-limited patients with these combinations have a much higher rate of being negative for minimal residual disease than with any of those drugs given alone, so I'm on venetoclax just by itself, or I'm on ibrutinib just by itself. How long those patients remain in remission is not known because none of those studies are mature enough to report that data yet. And what is definitely not known is does that predict, in a certain population of patients, that we can't predict who the people are, but people treated that way, is there going to be a certain percentage that is truly cured? Meaning the CLL never comes back.

Carol Preston:
Our thanks to Doctors Bannerji and Grossman, and to the patients from North Jersey who participated online. I'm Carol Preston reminding you that your questions can help lead you to more informed treatment decisions.

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