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

CLL specialist Dr. Meghan Thompson from Memorial Sloan Kettering Cancer Center stated that CLL patients 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 targeted CLL therapies (the medicines target mainly cancer cells leaving most healthy cells alone), how long a patient can expect to live with CLL is hopeful. 

Watch Dr. Thompson’s video about how long you can expect to live with your CLL.

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 Can I Expect to Live Without Therapy? 

The data below is from studies conducted by CLL specialists that evaluated, on average, how long CLL patients 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 CLL patient’s life, please read the sections below.

• 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 Treatment? 

Once your CLL signs/symptoms meet the criteria below, you are able to start treatment. CLL treatment options include fixed-duration targeted therapies, continuous-duration targeted therapies, or treatment inside a clinical trial. We will talk more about these medicines in the sections below. 

Reasons to start treatment include: 

• You have major CLL symptoms such as: 
  • Drenching night sweats 
  • Fever with no infection 
  • Extreme fatigue 
  • Unintended weight loss of at least 10% of your body weight within 6 months 
• CLL is causing one or more of your organs to stop working properly 
• The size of your spleen or lymph nodes is increasing quickly and causing you pain
• CLL is causing your blood cell counts to decrease such as red blood cells and platelets 
• You have autoimmune cytopenia (your body is destroying its own blood cells) and treatment with steroids is not working 
• You can enroll in a clinical trial 

Average Time in Remission with Fixed-Duration CLL Therapies

Fixed-duration refers to receiving the treatment for a set period and then stopping. If this is your first treatment, you can expect to receive the non-chemo treatment combination of venetoclax (Venclexta) with obinutuzumab (Gazyva) for one year and then stop.

If this is your second or more time receiving treatment, venetoclax in combination with a monoclonal antibody (obinutuzumab or rituximab) would be administered for two years and then stopped. The monoclonal antibody CLL specialists recommend is obinutuzumab because they have found it more effective than rituximab (Rituxan). 

• 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 patients 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 

Average Time in Remission with Continuous-Duration CLL Therapies

Non-chemo continuous-duration CLL therapies are taken indefinitely until the patient can no longer tolerate side effects or the CLL cells mutate and no longer respond to the medicine. 

CLL specialists currently have the most data on the covalent BTK inhibitor ibrutinib (Imbruvica), as it was the first FDA-approved BTK inhibitor. Please note that CLL specialists recommend patients take the newer BTK inhibitors such as acalabrutinib (Calquence) or zanubrutinib (Brukinsa) 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 limit the progression of your 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 patients who took this treatment combination, at the check-in point of 6 years, 78% of patients continued to have control over their CLL from progressing. 
  • Acalabrutinib by itself: At the check-in point of 6 years, 62% of patients continued to have control over their CLL from progressing. 

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

• Pirtobrutinib (Jaypirca)
  • 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 your 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 your 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 your CLL is 1.3 years. 

New CLL Medicines in Clinical Trials 

There are new CLL medicines in clinical trials, many of which will hopefully improve the lifespan of patients with CLL compared to the current FDA-approved therapies. We encourage patients to talk with their doctor about whether participating in a clinical trial is right for them.  

Interested in Accelerating Research? Join HealthTree Cure Hub!

Are you interested in accelerating research toward a cure for CLL? We have created a powerful patient data portal named HealthTree Cure Hub for this very purpose. We invite you to join the 12,000-and-counting blood cancer patients who are collaborating with specialists through research surveys and studies in HealthTree Cure Hub. YOU are the key to improving CLL care. We are grateful for your time and support in helping us progress toward a CLL cure. Create your free HealthTree Cure Hub account by visiting the link below!

Create My HealthTree Cure Hub Account