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Can you live 20 years with CLL?

Chronic lymphocytic leukemia (CLL) is a type of cancer that affects the blood and bone marrow. It is one of the most common types of leukemia in adults. With advances in treatment, many patients are now living longer with CLL. So can you expect to live 20 years or more after a diagnosis of CLL? Here is an overview of the prognosis and life expectancy for CLL.

What is the average life expectancy for CLL?

The life expectancy for CLL varies quite a bit from person to person. On average, patients diagnosed with early stage CLL (Rai stage 0) live approximately 10 years. Patients diagnosed at intermediate Rai stages I and II live around 7 years on average. For advanced stage III and IV CLL, average survival is around 5 years from diagnosis.

However, these numbers reflect averages. Many patients live much longer than these estimates, while some may unfortunately pass away sooner. Your individual prognosis depends on several factors:

  • Your age at diagnosis
  • The stage of CLL
  • Your overall health
  • Presence of other medical conditions
  • How well you respond to treatment

With the treatments available today, many patients live 10 years or longer after their diagnosis. For early stage CLL, 20 year survival is certainly possible.

What factors affect prognosis with CLL?

Some of the main factors that impact your prognosis with CLL include:

Age

Younger people tend to live longer with CLL. The average age at diagnosis is around 70 years old. Patients under 50 have the best long-term outlook. Older patients over 70 may have more aggressive disease and more complications.

Disease stage

The outlook is better when CLL is caught early at stage 0 or 1. Advanced stage 3 or 4 CLL has a worse prognosis.

Chromosome abnormalities

Certain chromosome changes in CLL cells, like deletion of 17p or 11q, are linked with more rapid disease and shorter survival times.

Response to treatment

If you achieve and maintain a complete remission with treatment, you have a better long-term outlook. Relapsing or refractory CLL is harder to treat.

Overall health

Patients in good health, without other chronic illnesses, tend to live longer. Poor health and many comorbidities negatively impact prognosis.

What percentage of CLL patients live 10 years or longer?

Studies looking at large groups of CLL patients over time give a picture of the 10-year survival rates:

  • For low-risk early stage CLL, around 80-90% of patients live 10 years.
  • For intermediate risk CLL, 60-70% of patients survive 10 years.
  • For high-risk, advanced CLL, only 30-40% of patients live 10 years.

So while 10 year survival is quite good for low risk disease, the percentages decrease for higher risk groups. Still, even with advanced CLL, nearly a third to almost half of patients live 10 years or more.

What factors help patients with CLL live longer?

There are several things you can do that may potentially help you live longer with CLL:

  • Get early treatment – Treating high risk or symptomatic CLL early helps manage the disease.
  • Take your medications consistently – Stay adherent to your prescribed CLL medications.
  • Exercise regularly – Activity improves quality of life and supports your immune system.
  • Eat a healthy diet – Nutritious foods support your health during cancer treatment.
  • Don’t smoke – Smoking weakens the immune system and worsens outcomes.
  • Reduce stress – Finding ways to manage stress can benefit your mind and body.
  • Get emotional support – Talking to friends, family, and support groups can help you cope.

Living a healthy lifestyle, taking treatments consistently, and managing stress are key to maximizing your quality of life and longevity with CLL.

What are the latest treatments for CLL?

Many effective new treatments for CLL have been approved in recent years. These include:

Targeted drugs

Medications that target specific proteins on cancer cells can destroy CLL cells while minimizing effects on healthy cells. These include:

  • Ibrutinib
  • Acalabrutinib
  • Venetoclax
  • Obinutuzumab

Immunotherapy

Drugs that boost the immune system to better attack cancer can lead to long remissions. Examples include:

  • Rituximab
  • Lenalidomide
  • CAR T-cell therapy

Chemoimmunotherapy

Combining chemotherapy drugs with immunotherapy produces high remission rates for CLL.

Thanks to these highly effective modern treatments, patients are now living many years with well managed CLL.

What percentage of CLL patients live 20 years?

Twenty year survival rates for CLL include:

  • Early stage favorable CLL: 50-60% live 20+ years
  • Intermediate CLL: 30-40% survive 20 years
  • Advanced CLL: Less than 20% survive 20 years

For low risk CLL diagnosed early, 20 year survival is around 50 to 60%. However, less than 20% of high risk, advanced CLL patients live 20 years after diagnosis.

Can you be cured of CLL?

While often treatable, there is currently no cure for CLL. Even if treatment leads to a complete remission where tests no longer detect any cancer, this does not mean the CLL is cured.

In most cases, small numbers of leukemia cells remain in the body. Over time, these residual CLL cells multiply and cause the cancer to relapse. This is why most patients require ongoing monitoring and intermittent treatment.

However, research is ongoing into finding ways to completely eliminate or cure CLL. In the future, new immunotherapy techniques or improved stem cell transplants may lead to higher cure rates.

What happens in the later stages of CLL?

As CLL advances, it can cause a number of complications:

  • Increasing fatigue due to worsening anemia
  • More frequent infections from neutropenia and immune suppression
  • Enlarged lymph nodes and spleen
  • Bone marrow failure and low blood cell counts
  • Increased tendency to bleed from low platelets

If the CLL transforms into a fast-growing diffuse large B-cell lymphoma, this condition requires aggressive chemotherapy.

Managing symptoms and avoiding complications are the main goals of treatment in later stage CLL.

Conclusion

Living for 20 years or more after a CLL diagnosis is possible, especially when caught early at stage 0 or 1. While it is not yet curable, CLL is now a highly treatable cancer with new targeted drugs and immunotherapies. Patients who respond well to treatment and stay in remission can live active, full lives for many years after diagnosis.

Discuss your individual prognosis and life expectancy with your oncologist. With regular monitoring and proactive treatment when required, living a long, good quality life with CLL is an achievable goal for many patients.