How Long Will I Live With CLL?

People with CLL often want to know how long they will live with the disease. Below are the average amounts of time individuals with CLL can expect to live with the disease if it is left untreated (the start time is at diagnosis) and how many extra years, on average, targeted therapies may extend your life. Please keep in mind that personal circumstances may vary. 

CLL specialist Dr. Meghan Thompson from Memorial Sloan Kettering Cancer Center stated that people with CLL often pass away from old age, living alongside the disease rather than from the disease itself. Because of the usually slow-growing nature of the cancer and thanks to the recent advances in CLL treatments how long a person can expect to live with CLL is hopeful. 

What are the Types of CLL?

The data below will talk about remission times for different types of CLL. Remission means that CLL signs and symptoms are reduced and are not progressing. Some studies presented their remission data separating the types of CLL, whereas other studies did not and simply grouped all types together using a patient average. Click here to learn more about the types of CLL. 

Something to note about the types of CLL: Some features, like IGHV, do not change. Meanwhile, others, like del(17p), can change over time. Unfortunately, what influences CLL to acquire new genetic differences is not yet well understood. However, attending appointments with your CLL specialist can help regularly screen the genetic features of your CLL cells to find any changes in your CLL type that influence prognosis.  

These genetic features are screened by the following tests: 

• Fluorescence in situ hybridization (FISH) test to check for chromosome deletions like del(17p), del(11q), and del(13q). Click here to learn more about the FISH test. 
• Next-generation DNA sequencing to find gene mutations like unmutated or mutated IGHV. Click here to learn more about DNA sequencing. 

How Long Will I Live Without CLL Treatment? 

The data below is from studies conducted by CLL specialists that evaluated, on average, how long people with CLL live from the time of their initial diagnosis until they pass away if they do not receive treatment. To see data about how much time targeted therapies like venetoclax or BTK inhibitors extend a person with CLL's life, please read the sections below. Please note these are averages and individual circumstances may vary. 

• Del(17p)/TP53 mutation: 2.7 years 
• Del(11q): 6.6 years 
• Trisomy 12q: 9.5 years
• Del(13q): 11 years 
• Unmutated IGHV: 9.8 years 
• Mutated IGHV: 24.4 years 

When Can I Start CLL Treatment? 

CLL treatment starts if the disease is causing you health-related problems, not only if your lymphocyte count is high. Click here to read more about the qualifications to start therapy for CLL and the treatment options available to you. 

How Long Will I Remain in Remission after Taking Venetoclax?

Venetoclax is often referred to as a fixed-duration therapy as it is administered in combination with a monoclonal antibody like obinutuzumab for a set period of time and then stopped. Click here to learn more about the combination of venetoclax and obinutuzumab. The numbers below outline how long, on average, you can expect to be in remission after being treated with the following therapies: 

• Venetoclax + obinutuzumab used as a first line of therapy:
  • No del(17p)/TP53 mutation: 6.4 years
  • With del(17p)/TP53 mutation: 4.3 years
  • Mutated IGHV: 7 years
  • Unmutated IGHV: 5.4 years

• Retreated with a venetoclax-based therapy (some people were treated with venetoclax by itself, others were retreated in combination with obinutuzumab or rituximab):
  • Average amount of time in remission after treatment: 2.1 years 

• Venetoclax + monoclonal antibody (obinutuzumab or rituximab) used as a second line of therapy after stopping a covalent BTK inhibitor:
  • Total patient group (including all types of CLL) average: 3.6 years 

• Venetoclax + monoclonal antibody (obinutuzumab/rituximab) used as a third line of therapy after previous treatment with chemotherapy and a covalent BTK inhibitor:
  • Total patient group average (including all types of CLL): 3.6 years 

How Long Will I Remain in Remission While Taking BTK Inhibitors?

BTK inhibitors are often called continuous-duration treatments because they are taken indefinitely until the CLL cells stop responding to treatment, or the person is unable to continue because of side effects. Click here to learn more about BTK inhibitors. 

CLL specialists currently have the most data on the covalent BTK inhibitor ibrutinib (Imbruvica, Pharmacyclics and Johnson&Johnson), as it was the first FDA-approved BTK inhibitor. Please note that CLL specialists recommend people with CLL take the newer BTK inhibitors such as acalabrutinib (Calquence, AstraZeneca) or zanubrutinib (Brukinsa, BeiGene) over ibrutinib because they have fewer side effects and are proving to work better than ibrutinib. The below data shows how long you can expect a BTK inhibitor to delay the progression of CLL. 

• Ibrutinib - The average amount of time ibrutinib limits the progression of CLL: 
  • All ibrutinib patients combined average: 7.2 years
  • With del(17p)/TP53 mutation: 5.6 years
  • Mutated IGHV: 9.8 years
  • Unmutated IGHV: 6.7 years
  • If ibrutinib is your first treatment: 9 years
  • If you have had prior treatment before ibrutinib: 4.1 years
  • With del(17p)/TP53 mutation, if ibrutinib is your first treatment: 6.8 years
  • With del(17p)/TP53 mutation, if you have had prior treatment: 3.7 years

• Acalabrutinib 
  • Acalabrutinib + obinutuzumab: Your CLL specialist may recommend taking acalabrutinib in combination with obinutuzumab. For people who took this treatment combination, at the check-in point of 6 years, 78% of people continued to have control over CLL from progressing. 
  • Acalabrutinib by itself: At the check-in point of 6 years, 62% of people continued to have control over CLL from progressing. 

• Zanubrutinib
  • With del(17p)TP53 mutation: At the check-in point of 4 years, 79% of people with CLL patients continued to have control over CLL from progressing. 
  • Without del(17p)TP53 mutation: At the check-in point of 4 years, 82% of people CLL patients continued to have control over CLL from progressing. 

• Pirtobrutinib (Jaypirca, Lilly)
  • If you have previously taken a covalent BTK inhibitor like ibrutinib, acalabrutinib, or zanubrutinib, the average amount of time pirtobrutinib will limit the progression of CLL is 1.6 years. 
  • If you have never received treatment with a BCL-2 inhibitor like venetoclax, the average amount of time pirtobrutinib will limit the progression of CLL is 1.9 years.  
  • If you have received treatment with a BCL-2 inhibitor like venetoclax, the average amount of time pirtobrutinib will limit the progression of CLL is 1.3 years. 

New CLL Medicines in Clinical Trials 

There are new CLL medicines in clinical trials, many of which will hopefully further improve the lifespan of people with CLL compared to the current FDA-approved therapies. We encourage you to talk with your doctor about whether participating in a clinical trial is right for you. Click here to read about treatment options beyond venetoclax and BTK inhibitors for CLL. 

What Other Factors May Influence CLL Prognosis? 

• Stage of the disease: The stage of CLL at the time of diagnosis may impact prognosis. Early-stage CLL generally has a better prognosis than late-stage CLL
• Overall health: The person's overall health may also affect prognosis. Those with other serious health conditions may have a poorer prognosis
• Age: Younger people with CLL generally have a better prognosis than older people with CLL
• Response to treatment: How well the person responds to treatment can also affect prognosis. Those who respond well to treatment generally have a better prognosis

All of these factors play into survival statistics you may hear about. A 5-year survival rate is a statistic used in cancer research to describe the percentage of individuals diagnosed with a disease who are still alive 5 years after their diagnosis. The higher the survival rate, the more favorable the outcome. According to the American Cancer Society, the 5-year survival rate for people with CLL is about 83%. The 10-year survival rate is about 70%. However, these statistics can vary widely as they depend on individual factors such as the person's overall health, the stage of the disease at diagnosis, and the type of treatment received. It's also important to remember that these statistics are averages and can't predict the outcome for any individual person. Everyone's experience with CLL is unique. 

Having a CLL specialist on your team provides you with the best way of truly understanding your prognosis. Visit HealthTree's CLL Specialist Directory to find a CLL expert near you. 

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Do you want to have all your medical records and labs in one place? We have created a powerful patient data portal named HealthTree Cure Hub for this very purpose. We invite you to join and connect your medical records for free. Track all your tests, treatments, and side effects; explore available treatment options and clinical trials, and collaborate with CLL specialists through research surveys and studies in HealthTree Cure Hub. YOU are the key to improving CLL care.

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Sources: 

• Genomic Aberrations and Survival in Chronic Lymphocytic Leukemia
• Multivariable model for time to first treatment in patients with chronic lymphocytic leukemia
• Transcriptomic profiles and 5-year results from the randomized CLL14 study of venetoclax plus obinutuzumab versus chlorambucil plus obinutuzumab in chronic lymphocytic leukemia
• Venetoclax retreatment of patients with chronic lymphocytic leukemia after a previous venetoclax-based regimen
• Treatment Effectiveness with Venetoclax-Based Therapy after Bruton Tyrosine Kinase Inhibitors in Chronic Lymphocytic Leukemia: An International Real-World Study
• Long-Term Outcomes in Chronic Lymphocytic Leukemia Treated with Ibrutinib: 10-Year Follow-up of a Phase 2 Study
• Acalabrutinib ± Obinutuzumab Vs Obinutuzumab + Chlorambucil in Treatment-Naive Chronic Lymphocytic Leukemia: 6-Year Follow-up of Elevate-TN
• Brukinsa CLL Brochure
• Pirtobrutinib in Post-cBTKi CLL/SLL: ~30 Months Follow-up and Subgroup Analysis With/Without Prior BCL2i from the Phase 1/2 BRUIN Study