December 20, 2023

How Long Can You Live with Chronic Lymphocytic Leukemia?

Dr. Adam Kittai and Dr. Joanna Rhodes share their thoughts on CLL life expectancy

Edited by:

Jenna Jones

Receiving a chronic lymphocytic leukemia (CLL) diagnosis is likely to lead to a very human question: How long can I or my loved one live with CLL? To answer that question, we went directly to two CLL experts who have seen patients at all different stages.

In this conversation, Dr. Adam Kittai from The Ohio State University – The James, and Dr. Joanna Rhodes from Rutgers Cancer Institute of New Jersey share their insight and expertise on Chronic Lymphocytic Leukemia (CLL), offering a comprehensive understanding of the disease landscape. Through their combined knowledge, they shed light on factors influencing the lifespan of individuals with CLL, such as disease biology, genetic tests, and age at diagnosis.

Together, Dr. Rhodes and Dr. Kittai impart not only scientific insights but also a sense of hope, emphasizing the personalized nature of each CLL journey.

People can live decades with CLL, and they can live decades without needing treatment. Everyone’s a little bit different.
Dr. Joanna Rhodes

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table of Contents

How long can individuals live with chronic lymphocytic leukemia (CLL), and what factors contribute to the variation in life expectancy?
Could you elaborate on the significance of changes in white blood cell count for individuals with CLL?
What can you tell us about specific survival rates and life expectancy for people with CLL?
How do you approach discussing survival statistics with patients, considering the emotional impact it may have?
Dr. Kittai, can you share some insights on what to expect regarding survival rates for individuals with CLL??
CLL Patient Stories

How long can individuals live with chronic lymphocytic leukemia (CLL), and what factors contribute to the variation in life expectancy?

Dr. Joanna Rhodes: People can live decades with CLL, and they can live decades without needing treatment. Everyone’s a little bit different. Some of that has to do with the age at which you’re diagnosed, some of it has to do with your disease biology, and some of that can be told by genetic tests that we send on your CLL. It gives me an idea of how I think your CLL is going to behave potentially over time. Some of that we can tell also within the first couple of years by what your blood counts do over time.

Could you elaborate on the significance of changes in white blood cell count for individuals with CLL?

Dr. Joanna Rhodes: Now, the natural course of CLL is eventually, your white blood cell count will go up. The first time that happens, it feels very scary for sure because you don’t know how that’s going to happen over time. But your white blood cell count going up doesn’t mean it might not come back down. CLL cells are pretty reactive, so if anything is going on, if you have an infection or if you had surgery, your white blood cell count can go up. It doesn’t mean it’ll stay that high. It can go back down. That’s something that we see pretty commonly in clinical practice.

»MORE: Hear directly from patients living well with CLL

What can you tell us about specific survival rates and life expectancy for people with CLL?

Dr. Joanna Rhodes: According to SEER, which is our National Cancer Institute data, the five-year survival rate currently for CLL is around 89%. That means at five years, 89% of people who were diagnosed with CLL are still alive. What we don’t always know is where the 11% death rate is from because the median age of diagnosis of CLL is 70. As we get older, other things can happen, like heart disease, hypertension, and motor vehicle accidents. It doesn’t necessarily take into account exactly why patients who have CLL are passing away.

“Get creative and try to find ways to bring joy to your life and happiness because life is short for all of us. No one knows what the next five seconds are going to bring so just live your life and enjoy your life”
Susan K. | Explore her CLL story

How do you approach discussing survival statistics with patients, considering the emotional impact it may have?

Dr. Joanna Rhodes: That’s also a hard statistic to hear, so one of the ways that I frame this for patients is that while we have statistics, that’s taking a whole group of people and figuring out the trend. The only person that matters is you. You’re what we call an n-of-1, and so that’s important to remember. Just because there’s a number out there doesn’t necessarily mean that number relates to what your story is going to be and what your journey is going to be.

Dr. Kittai, can you share some insights on what to expect regarding survival rates for individuals with CLL??

Dr. Kittai: One of the questions I hear is the average age of death of CLL patients. There was an interesting study that was presented at iwCLL that looked at all patients who were treated in modern-day clinical trials. These are patients who require treatment. They did a study where they took all those patients and matched them to age-matched controls in the general population. The overall survival of the two groups was practically equal.

With treatment, patients were getting very, very close to their life expectancy. Remember, these are all clinical trials so it’s going to seem a little bit low. It was 52 to 55 months versus age-matched controls which was 56 months. Once again, it was age-matched controls, so they matched the population to age-matched controls to general society, and the difference was only by a few months. That tells us that our patients with CLL are living very close to the normal life expectancy, even if they require treatment with our new therapies, which is great news.

CLL Patient Stories

Susan K.

Symptoms: Swollen lymph nodes on the neck, high white blood count
Treatment: Venetoclax & obinutuzumab

Hannah D.

1st Symptoms: fatigue, high WBC

Treatment: Imbruvica, Venetoclax

Andrew SchorrDiagnosis: Myelofibrosis, Chronic Lymphocytic Leukemia (CLL)Treatment: Clinical trial, Gazyva, Jakafi, Increbic, Reblozyl and steroids

Jeff F.

1st Symptoms: Fatigue and night sweats

Treatment: Clinical trial of ofatumumab

Leesa T.

1st Symptoms: Bruising

Treatment: Imbruvica (ibrutinib),
Brukinsa (zanubrutinib)

Michele N.

1st Symptoms: Slow healing, scalp infection, enlarged lymph nodes

Treatment: Clinical trial of ibrutinib, fludarabine, chlorambucil and rituximab; acalabrutinib

Tamsin W.

1st symptoms: Out of breath, dizzy, nauseated, tiredness, palpitations
Treatment: Obinutuzumab & venetoclax

Bill M.

1st symptoms: Tightness, lumps in left side of neck, severe pain in left shoulder, enlarged spleen
Treatment (CLL): 6 cycles of EPOCH, clinical trial for DuoHexabody-CD37

Stephen B.

1st symptoms: difficulty swallowing and fatigue
Treatment: Rituxan, Bendamustine, targeted therapy BTK inhibitor (ibrutinib)

Sean R.

1st symptoms: No apparent symptoms; went to ER for unrelated shoulder pain
Treatment: Clinical trial, Ibrutinib & Venetoclax

Lacey B.

1st symptoms: Extreme fatigue and elevated WBCs
Treatment: FCR chemo and Venetoclax+R

Tony D.

1st Symptoms: Lump in back of neck that got bigger in a couple weeks
Treatment: Targeted therapy - orall pill (Imbruvica), takes 3 pills a night

December 15, 2023

Latest Data on Newly Approved CLL Drug Pirtobrutinib Presented at ASH 2023

Top CLL doctors share their thoughts on pirtobrutinib

Edited by:

Jenna Jones

Accelerated approval was granted to pirtobrutinib (JAYPIRCA, Eli Lilly and Company) by the U.S. Food and Drug Administration (FDA) for the treatment of adult patients with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (CLL/SLL) who have received at least two prior lines of therapy, including a BTK inhibitor and a BCL2 inhibitor.

To better understand what the approval means for CLL/SLL patients, we spoke directly to Dr. Adam Kittai from The Ohio State University – The James and Dr. Joanna Rhodes Rutgers Cancer Institute of New Jersey at this year’s American Society for Hematology (ASH) Annual Meeting.

This interview has been edited for clarity and length. This is not medical advice. Please consult with your healthcare provider for treatment decisions.

Table Of Contents

What makes pirtobrutinib distinct from other FDA-approved BTK inhibitors?
Can you share your insights on the safety and effectiveness of pirtobrutinib?
Can you provide an overview of the BRUIN trial?
Can you elaborate on the implications of this data for informing patients about the expected duration of treatment?
What can you tell us about pirtobrutinib’s side effects and clinical trials?
Final thoughts
CLL patient stories

What makes pirtobrutinib distinct from other FDA-approved BTK inhibitors?

Dr. Joanna Rhodes: Pirtobrutinib is different from our other FDA approved BTK inhibitors because it’s something called a non-covalent inhibitor. It is a different drug entirely than our prior BTK, our covalent BTK inhibitors – ibrutinib acalabrutinib, and zanubrutinib. I consider it in its own class of drug, as opposed to lumping it into all BTK inhibitors because they do have different pathways and I think will be used in different scenarios.

Right now, the current FDA approval for pirtobrutinib is for patients that have received a covalent BTK inhibitor – so have gotten ibrutinib, acalabrutinib, or zanubrutinib – as well as a BCL2 inhibitor. And in usually in the United States, that’s venetoclax. It’s the one that’s commercially available. One of the challenging clinical scenarios that we were in before pirtobrutinib was if patients need more than two lines of therapy, what were we giving them? And we didn’t have a lot of great options.

Can you share your insights on the safety and effectiveness of pirtobrutinib?

Dr. Joanna Rhodes: Having participated in the BRUIN trial, I can tell you from a patient perspective that it is very few side effects. I think that’s really wonderful, and it’ll be exciting to see how pirtobrutinib moves into the treatment landscape of CLL

Can you provide an overview of the BRUIN trial?

Dr. Adam Kittai: So here at ASH, we saw an updated BRUIN trial analysis by my mentor, Dr. Woyach, at the CLL oral session that gave us a longer time follow up for patients on pirtobrutinib. But it also helped us know how patients do, whether they got BCL2 inhibitor venetoclax or not. In the trial, it was only mandated that you get a BTK inhibitor. 100% of patients received a BTK inhibitor. However, about 50% of received venetoclax as well. Dr. Jennifer Woyach showed us in the trial that if patients had received a prior BTK inhibitor and a venetoclax when they got pirtobrutinib, the median PFS was around 15 months, whereas if they did not give venetoclax, the median PFS is around 23 months.

Can you elaborate on the implications of this data for informing patients about the expected duration of treatment?

Dr. Adam Kittai: The reason why I bring this up, and why I think it’s important, is it helps us inform patients about how long we expect them to stay on drug. It also might have implications into the future about sequencing in terms of whether or not we should go from a covalent BTK inhibitor to venetoclax to a non-covalent or covalent BTK, better to non-covalent BTK orbiter to the nucleus. I think time will tell until we really know the answer to that question, but at least knowing this data is really informative.

Another thing that was presented by Doctor Jennifer Brown at Dana-Farber was the resistance mechanisms to pirtobrutinib. We got a better idea of how resistance forms in pirtobrutinib and how pirtobrutinib helps with resistance to covalent BTK inhibitors.

Once again, she showed that T474I and L528W are the primary resistance mutations for pirtobrutinib, and knowing those resistance mutations helps us as well. Knowing, sequencing, knowing and informing in the future whether or not we can go from covalent to non-covalent, which we know we can, or non-covalent to covalent, which is still a question that I think remains to be solved.

What can you tell us about pirtobrutinib’s side effects and clinical trials?

Dr. Joanna Rhodes: I can tell you from a patient perspective that it has very few side effects. I think that that’s really wonderful, and it’ll be exciting to see how pirtobrutinib moves into the treatment landscape of CLL.

There’s a lot of upcoming clinical trials using pirtobrutinib that we don’t have data from yet. They’re currently enrolling, and some have completed enrollment. Those are comparing pirtobrutinib to other covalent BTK inhibitors for patients who haven’t been treated with a BTK inhibitor. And then I think what’s interesting is we’re going to see it used in combination therapy for time-limited durations of treatment. And I think it’s going to be a safe and effective drug in that scenario as well, but we don’t have data from those trials yet. So definitely more to come from pirtobrutinib. But again, really exciting that for patients that have progressed or have received a BCL2 inhibitor and a covalent BTK inhibitor, we have this as a potential treatment option, commercially available and readily available outside of clinical trial.

Final thoughts

Dr. Adam Kittai: So really exciting to see this data, really exciting to see the evolution of pirtobrutinib. And I think the most exciting thing is now we just have another drug that’s approved for the treatment of CLL, which is just fantastic for our patients.

CLL patient stories