Living with Chronic Lymphocytic Leukemia:
Resources, expertise, and survivor support to help in the months and years after diagnosis

To help you along the way in the weeks and months after a diagnosis of chronic lymphocytic leukemia (CLL), SurvivorNet has developed this series called Living With CLL.

The series is designed to help you navigate some of the challenges that may pop up as you plan for and undergo treatment — and beyond.

General Information

General Information to help along the way

Getting the news that you have cancer can be overwhelming. When it comes to facing the diagnosis of chronic lymphocytic leukemia (CLL), learning more about your specific case can help you feel in control. That’s why it’s important to ask your doctors for more information about your diagnosis, the journey you face, and your treatment options.

In this section of Living With CLL, we’ll provide some basic information about how to cope with the physical, emotional, and social impact of the disease — as well as steps to take after a diagnosis.

Getting the news about cancer

There are a few basic things you can do to help manage the process when you first learn of your cancer diagnosis.

Dr. Heather Yeo, a colorectal surgeon at Weill Cornell and an advisor to SurvivorNet, has these tips for patients:

  • Have someone come with you to the doctor
  • Take notes
  • Don’t be afraid to get a second opinion

Consider getting a second opinion after a CLL diagnosis

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If you get a diagnosis of CLL, it’s a good idea to get a second opinion. Many people are hesitant to do that but you should know the American Medical Association says it is your right to get a second opinion. What’s more, many doctors welcome it and in some cases, it may be required by insurance.

Because CLL is a disease you may live with for a long time, you also want to make sure that you are comfortable with your doctor. Doctors will not be offended if you seek out an additional opinion — and in fact, many professionals SurvivorNet has spoken to recommend it.

After a diagnosis, "be kind to yourself'

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“How am I going to get through this?” It is often one of the first questions a person will ask after a cancer diagnosis.

“My advice is to take one day at a time,” says Dr. Susan Parsons, Director of Survivorship Care at Tufts University, “and be kind to yourself.”

Survivors also tell us it’s key to ask for the support you need both mentally and with your practical needs. There is life after cancer — so the goal is to keep hopeful and strong and cut yourself some slack.

Diagnosis & Determining Treatment

What is CLL? Understanding your diagnosis

“Chronic lymphocytic leukemia is a cancer of a white blood cell called a B lymphocyte,” explains Dr. Matthew Davids, director of the Center For Chronic Lymphocytic Leukemia at the Dana Farber Cancer Institute.

“These are cells that are normally there to help you fight off infections, and for reasons that we don’t often understand, these cells can gradually accumulate over time and become a tumor that we call CLL.”

In this section of Living With CLL, we’ll go over how the disease is diagnosed, the steps to take after receiving a diagnosis, and the stages of the disease.

After diagnosis, the first conversations

CLL can be a hard cancer to understand because it doesn’t follow a traditional path like most other cancers that require immediate treatment.

“This can make patients anxious,” says Dr. Nicole Lamanna, a leukemia specialist at Columbia University Medical School.

This is why she says she spends a considerable amount of time answering questions and helping patients feel emotionally and physically safe. “I think a lot of patients will call this watch and worry. We call it watch and wait,” she says.

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CLL generally grows very slowly. So if your unhealthy white blood cells the leukemia cells don’t outnumber or impact the rest of your blood count, there’s no urgency to treat your condition. Some patients can be monitored for years and never need therapy. In fact, about a quarter of people with this type of CLL never need treatment.

For those who do need treatment tests are done to see who might need therapy sooner. There is no curative therapy for CLL, says Dr. Lamanna, so there’s no point in exposing patients to the side effects or complications of strong chemotherapy.

Stages of CLL

Doctors use the Rai staging system for CLL, which involves only blood tests and a physical exam. The stages are broken up into early-stage (stages zero, 1 and 2) and advanced (stages 3 and 4).

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Early in the disease, the lymphocyte count is high and the lymph nodes, liver and spleen may be affected to varying degrees.

Most patients in the early-stage do not require any therapy and may be placed on observation for months, or even years. Advanced-stage means the disease has infiltrated the bone marrow, and caused low red blood cell count (anemia) or low platelets (thrombocytopenia). When the disease reaches more advanced stages, typically treatment is required.

Tests to confirm the diagnosis

The first signs of CLL are often detected by blood work during a routine doctor’s visit. Some people may have physical symptoms — like weight loss, fatigue, or swollen lymph nodes — which usually indicate an advanced stage of the disease.

Several blood tests will be done to confirm the diagnosis. Someone with CLL usually has a high white blood cell count and a low red cell count.

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If your doctor suspects you may have CLL, the diagnosis will be confirmed with a variety of tests.

These include but are not limited to:

  • Health history and exam
  • Complete Blood Count
  • Absolute Monoclonal B-Lymphocyte Count
  • Fluorescence in situ hybridization (FISH)
  • IGHV Mutation Status
  • TP53 Status
  • A flow cytometry test identifies the distinctive cell surface markers that distinguish CLL cells.

If a diagnosis cannot be determined using blood flow cytometry, a lymph node biopsy or bone marrow biopsy will be performed.

The Importance of genetic testing

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After someone receives a diagnosis of CLL, one of the most important steps in determining treatment is having genetic tests (also known as biomarker tests).

These tests can be done on a sample of blood or bone marrow, Dr. Julie Vose, chief of hematology and oncology at the University of Nebraska Medical Center’s Buffett Cancer Center, tells SurvivorNet.

The specific genetic tests, she says, may include:

  • A FISH panel, which identifies the specific abnormalities in the CLL cells
  • A mutation test, which can identify the maturity of CLL cells

According to the National Comprehensive Cancer Network guidelines, the choice of the first type of therapy for CLL should be based on:

  • Disease stage
  • The presence/absence of del(17p) or TP53 mutation (17p deletion refers to a missing part of a chromosome. When that is missing, cells lack the P53 protein necessary to repair damaged DNA and kill off cells that can’t be repaired. Leukemia cells lacking P53 continue to grow and can resist chemotherapy.)
  • IGHV mutation status (A patient’s IGHV mutation status tells doctors the age of the cell that allowed CLL to grow. This information helps doctors determine which type of treatment to use.)
  • Patient’s age
  • Patient’s health conditions (such as high blood pressure, diabetes)
  • Toxicity of therapy

The role of the IGHV mutation in CLL prognosis

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A patient’s IGHV mutation status is a key factor in CLL prognosis. Doctors looking for a patient’s IGHV mutation status are looking at the age of the cell that allowed CLL to grow. If it is a younger, non-mutated cell, it will likely be more aggressive. If it is an older, mutated cell, those tend to be slow-growing.

This information helps doctors determine which type of treatment to use. Typically, a patient with a mutated IGHV cell will go into remission for 10 to 15 years after initial treatment while a patient with an non-mutated cell will typically only have 3 to 4 years of remission.

According to the National Comprehensive Cancer Network guidelines, ibrutinib (Imbruvica) and acalabrutinib (Calquence) with/without obinutuzumab (Gazyva) are the preferred first treatment for all patients including high risk subgroups such as non-mutated IGHV.

Fludarabine, Cytoxan and Rituxan (known as FCR) is the preferred treatment for patients under 65 years old with untreated IGHV-mutated CLL, according to NCCN.

Treatment Options

What are the treatment options?

Treatment options for CLL vary greatly and there have been a number of major advances recently.

We’ve consulted several experts in the field to get advice on the treatment process and to learn why it’s important for patients to be informed about their options — and ask questions where there’s any confusion.

Determining when to treat CLL

CLL is a slow-growing chronic cancer.

Many people diagnosed with the disease won’t need treatment at diagnosis. Instead, patients are monitored, and their blood count is tracked to determine if treatment is needed.

Treatment options for CLL depend on age & other factors

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Dr. Davids says that for patients under age 65 with untreated IGHV-mutated, the go-to chemo-immunotherapy regimen is usually FCR — a combination of Fludarabine, Cyclophosphamide, and Rituximab.

Almost all patients will go into remission after this treatment, and about 50 percent of those patients will go into complete remission.

Since this treatment route is an aggressive one, and isn’t well tolerated in older patients, doctors typically will not recommend it for patients over age 65.

For older patients, doctors may use a different chemo-immunotherapy treatment called BR, says Dr. Davids, which is often a combination of Bendamustine and Rituximab.

In certain cases, other treatment options like targeted therapies may be used.

Targeted Therapies

Targeted therapies for CLL

There have been major advances using targeted therapies to treat CLL in recent years, including BTK inhibitors.

Targeted therapies attack cancer specifically rather than attacking the rest of the body and hoping to kill the cancer in the process (which is what chemo does). BTK inhibitors are an example of targeted therapies used in CLL.

Currently, there are three BTK inhibitors, approved by the FDA as the first treatment for CLL. These are

  • Imbruvica (Ibrutinib)
  • Calquence (acalabrutinib)
  • Brukinsa (Zanubrutinib)

Oral Medicine for CLL: Ibrutinib

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Ibrutinib is among the newer oral medications approved for the treatment of CLL. It is a BTK inhibitor meaning it targets abnormal cells.

According to the National Comprehensive Cancer Network guidelines, ibrutinib (Imbruvica) and acalabrutinib (Calquence) with/without obinutuzumab (Gazyva) are the preferred first treatment for all previously untreated patients.

Oral Medicine for CLL: Calquence

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Calquence (acalabrutinib) is an oral therapy for chronic lymphocytic leukemia (CLL). Unlike traditional chemotherapy, Calquence is a targeted therapy, which means that it delays or prevents the growth of cancer cells rather than destroying them.

“Over the past several years the treatment landscape has dramatically changed and remarkably improved for patients with CLL,” says Dr. Nicole Lamanna, a leukemia specialist at Columbia University Medical Center in New York City.

“It’s hoped that Calquence will decrease some of the adverse side effects, such as atrial fibrillation and bleeding issues, seen with ibrutinib, (brand name Imbruvica) another drug in the same class.”

Zanubrutinib — a new and improved medication for CLL

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Zanubrutinib is a new, effective drug for CLL in certain cases. It can significantly prolong the time you can live without a worsening of your disease or symptoms.

In clinical trials, 78.4% of the patients did not experience any worsening of their disease 24 months after starting the medication.

This medication blocks a protein expressed on the surface of CLL cells that promotes their growth. It is important to emphasize that zanubrutinib is generally well-tolerated, and its side effects are usually mild.

Venclexta in Treating CLL

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Venclexta (venetoclax) is a targeted therapy option for patients with chronic lymphocytic leukemia (CLL). It is a highly potent drug that can kill CLL cells quickly.  Instead of attacking all rapidly dividing cells like chemotherapy does, it blocks a specific protein called BCL-2 in cancer cells that helps them stay alive.

Venclexta is FDA-approved in combination with:

  • Gazyva (obinutuzumab) for patients with CLL who have not been previously treated.  Gazyva is a type of drug called a monoclonal antibody. It targets a CD20 antigen, a protein found on B cells (which, in the case of CLL, are cancerous.)
  • Rituxan (rituximab) for the treatment of people with CLL, with or without 17p deletion, who have received at least one prior therapy.

The role of monoclonal antibodies in treating CLL

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Monoclonal antibodies have been used as CLL treatment for at least twenty years. The medication targets a protein on CLL cells called CD20. The CD20 antigen is found on B cells (which, in the case of CLL, are cancerous). The drugs target the protein and then summon the patient’s own immune system to attack cancer cells.

Monoclonal antibodies currently approved to treat CLL include:

  • Gazyva (Obinutuzimab)
  • Arzerra (Ofatumumab)
  • Rituxan (Rituximab)

Other Treatment Options for CLL

There are other types of treatments available for patients with CLL. These include:

  • Immunotherapy: This form of therapy uses a patient’s own system to fight cancer. Lenalidomide is one such medication.
  • Chemotherapy: These drugs are toxic to all growing cells, including cancer cells. They are usually given through an injection into a muscle or vein. Chlorambucil and bendamustine are two chemotherapy medications used for CLL.

Side Effects

Dealing with treatment side effects

You may experience different side effects during and after treatment for CLL. It’s important to speak to your doctor early on about the potential side effects to be aware of — and what to do if you begin experiencing them.

In this section of Living With CLL, we will outline some common side effects from different treatments and what can be done to manage them.

Several treatments for CLL can lead to a potentially serious side effect known as tumor lysis syndrome — so doctors will need to monitor for it.

It’s key to remember there are many treatment approaches to managing tumor lysis syndrome and any other side effects that may appear.

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Certain patients undergoing treatment for CLL may have an increased risk for a potentially serious side effect called tumor lysis syndrome.

Treatments that may put patients at risk of tumor lysis syndrome include:

  • Chemoimmunotherapy
  • Venetoclax
  • Lenalidomide
  • Obinutuzumab

The syndrome can lead to kidney damage and severe blood electrolyte disturbances. Because it can be life-threatening, doctors need to carefully assess a patient’s risk for this side effect.

If a patient does develop tumor lysis syndrome, treatment may include intravenous (IV) fluids, uric acid reducers allopurinol and rasburicase, and blood work to monitor electrolyte levels and kidney damage, as well as testing to monitor heart rhythm and urine output.

Dr. James Gerson, a hematologist at UVM Medical Center, told SurvivorNet that the monitoring at the beginning of treatment for patients getting venetoclax and obinutuzumab can be a hassle, but that’ll subside over the treatment process.

“The issue with CLL is that if the patient has a lot of cells, they can be prone with any of these treatments to a disease or entity called tumor lysis syndrome,” Dr. Julie Vose, chief of hematology/oncology at the University of Nebraska Medical Center and Buffet Cancer Center, told SurvivorNet.

“That’s where the cells, because our treatments are so effective, die all at the same time and can cause problems with a kind of sluggish blood, if you will, which can clog up the kidneys and cause kidney problems or cause electrolytes to be out of whack.”

Dr. Vose noted that patients, particularly those taking obinutuzimab or the BCL-2 inhibitor venetoclax, have to be closely monitored during the treatment process.

Making a Survivorship Plan

Making a survivorship plan

After treatment for CLL, you will need to be monitored for side effects as well as any additional health problems that may pop up.

If you have not experienced many complications from therapy, you may be able to go back to doing many of the things you did before treatment. However, you and your doctor will need to schedule follow-up visits and tests to monitor for any sign of disease in the future.

Monitoring CLL After Initial Diagnosis

In CLL, not all patients need treatment immediately after a diagnosis. Only about a third of patients do.

Whether you needed active treatment or took a surveillance approach, a survivorship plan will include a schedule for follow-up exams and tests, plus a schedule for tests to check for any long-term health impacts from your cancer or treatment, and screening for any new cancers.

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“The tempo of their disease is very, very important,” Dr. Lamanna, a leukemia specialist and associate professor at Columbia University Medical Center, told SurvivorNet about making treatment and surveillance decisions.

“Initially when somebody gets diagnosed, if they don’t need treatment, I tend to follow people quarterly, more or less the first year. The longer somebody has had this leukemia, and declaring that they don’t need treatment, we don’t see them as often. We start spreading out those visits, because their blood counts have been stable for years, and some of those folks are seeing me every six months. Some of them are seeing me annually.”

Tests That Can Inform the Prognosis of CLL

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A variety of tests can help doctors determine the prognosis or outcome of your CLL.

The first line of genetic or molecular testing is often looking at the chromosome amplifications or deletions that are unique to your cancer. This is done in a test called fluorescent in situ hybridization (FISH).

In some cases of CLL, the leukemic cells may be missing part of a chromosome. The loss of part of chromosome 13 is linked to less aggressive disease and a better outlook. Patients with this deletion may go for years without treatment.

Deletion of part of chromosome 17 is linked to a poorer outlook. Patients with this deletion may need to start treatment within a few months of their diagnosis.

Another important test looks at the gene for producing the immunoglobulins or antibodies that help you fight infections. This test checks if the genetic instructions for the immunoglobulin heavy chain variable region (IGHV) have changed to make your CLL more or less aggressive.

Having all this genetic information only gives a general idea of CLL outlook though. The tests can’t really predict exactly how you or any individual will do.

Possible CLL complications: Richter’s Transformation

A small percentage of people who have CLL will develop a condition called Richter’s Transformation, or Richter’s Syndrome, which is when the disease transforms into a faster-growing lymphoma.

“Patients usually present sick,” Dr. Nicole Lamanna told SurvivorNet. “There’s a big change in their disease. They can have fevers, night sweats, and weight loss. They may have a lymph node that is growing out of proportion to what’s going on with the rest of their bodies.”

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When the most common type of Richter’s Transformation occurs, and a CLL turns into a diffuse large B-cell lymphoma, there are a few treatment options:

  • Rituximab-based chemoimmunotherapy
  • If chemoimmunotherapy works, an allogeneic transplant
  • Enrolling in a clinical trial

Clinical Trials

When to consider a clinical trial

Clinical trials allow patients to gain access to new drugs that are still in the development phase

Through clinical trials, doctors are able to carefully study and learn which new regimens are better at treating CLL.

They’re also one of the best ways for patients to get state-of-the-art cancer treatment. You can find out if you’re eligible for a clinical trial by talking with your doctor, checking, or using SurvivorNet’s Clinical Trial Finder.

Why should CLL patients consider a clinical trial?

Diet & Exercise

Living with CLL: Diet and exercise

You may be wondering if you’ll have to make any major changes to your lifestyle during or after cancer treatment — or while on active surveillance.

That will largely depend on your diagnosis and the type of treatment. Different people manage treatment in very different ways. However, there are some healthy habits doctors recommend across the board.

Keeping it positive & healthy

Dr. Sid Ganguly, Section Chief of Hematology at Houston Methodist Oncology, tells SurvivorNet that, although diet, exercise, and a positive attitude can never replace the interventional cancer treatment that you and your oncologist decide on, these factors can absolutely help patients tolerate these treatments.

“We call it ‘eye of the tiger,’” Dr. Ganguly says. “You have to have the eye of the tiger to go through this grueling process that is necessary these days to get rid of these virulent and aggressive cancers.”

Recommendations for a Healthy Lifestyle

Recommendations for a Healthy Lifestyle

Being active through exercise and physical activity, can improve your overall fitness and lower your risk of other chronic diseases.

Dr. Ken Miller, the Director of Outpatient Oncology at the University of Maryland Greenebaum Cancer Center, has some guidelines :

  • Exercise at least two hours a week — and walking counts
  • Eat a low-fat diet
  • Eat a colorful diet with lots of fruits and vegetables
  • Maintain a healthy weight

What about vitamins, minerals, and supplements?

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The vitamin and supplements industry is massive — but there’s not a whole lot of clear data showing that many of these products are effective, particularly when it comes to cancer.

“A very important issue to remember…is that they are not FDA-controlled, which means that you don’t know what you’re getting,” said Dr. Marleen Meyers, a medical oncologist and Director of the Cancer Survivorship Program at NYU Perlmutter Cancer Center.

Dr. Meyers recommends her patients focus on a healthy diet instead of relying on a capsule for their vitamins or nutritional needs.

Does green tea have a role in treating CLL?

Green tea has long been celebrated for its antioxidant properties but with regards to cancer, there is no proof it is effective in treating the disease, Dr. Nicole Lamanna told SurvivorNet.

She noted there was a recent study by the Mayo Clinic in which high doses of a green tea extract were given to patients with early-stage CLL. It appeared to slightly soften lymph nodes and make a little improvement in blood counts.

However, Dr. Lamanna said the results were not “clinically meaningful.” They didn’t prove much about green tea, and that a green tea CLL treatment is likely ineffective.


What is the risk of relapse?

Treatment of chronic lymphocytic leukemia (CLL) is not considered to be curative. This means that after your initial round of CLL treatment with a drug like chemotherapy, there may be no signs of leukemia for years, but the disease will likely return at some point.

There have been incredible advances in treating CLL in the past few years. What sort of treatment your doctor recommends after a relapse will depend on several factors.

Treatment for CLL may resume years later

PI3K Inhibitors for Relapsed CLL

A potential treatment option for CLL that has returned are phosphoinositide 3-kinase (PI3K) inhibitors, which work by blocking signals to the B-cell receptor (BCR).

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The B-cell receptor is a protein on the surface of B cells that tells the cell to stay alive and make more cells. According to the NCCN guidelines, blocking the BCR pathway causes the cells to die. PI3K is a protein on the BCR pathway.

The Food and Drug Administration has approved two PI3K inhibitors for use in treating CLL that has returned:

  • Idelalisib (Zydelig)  – The FDA approval for CLL is in combination with rituximab (Rituxan).  (Rituximab is a type of drug called a monoclonal antibody. It works by targeting a CD20 antigen, a protein found on B cells that, in the case of CLL, are cancerous. This summons your body’s immune system to attack and kill the cells.)
  • Duvelisib (Copiktra) – This drug is approved to treat CLL that has returned or has not responded to previous treatment. Patients should have received two prior types of therapy.

Oral Medicine for Relapsed CLL: Idelalisib

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Another option is an oral medication called idelalisib. A study from an Oregon hospital shows that combining an oral tablet called idelalisib (also known as Idela) with monoclonal antibody, rituximab, is both a safe and effective treatment for this chronic disease.

This new option is a game changer. However, it is currently only shown to work in patients who have relapsed. Previously untreated patients are not currently eligible for the drug.

Dr. Matthew Davids, of the Dana Farber Cancer Institute, told SurvivorNet that while the drug is very effective, there are side effects that patients should watch for. These include diarrhea, which can lead to colitis, liver irritation, which may cause elevated liver enzymes, and inflammation of the lungs.

Integrative Medicine

Can integrative medicine help me recover?

Many cancer survivors have found solace in integrative treatment options, like meditation, during or after the treatment process. Integrative medicine means incorporating things like dietary guidelines, exercises like yoga, mindfulness, acupuncture, and more into a patient’s care.

When dealing with a journey that can be nerve-wracking and very emotional, these approaches can really help patients cope with the disease mentally.

In this edition of Living with CLL, we’ve included a guided meditation for beginners and some testimony from cancer survivors about how helpful these integrative approaches can be.

Let's try it out! A simple guided meditation

Integrative vs. alternatie medicine

Integrative medicine can be really helpful both during and after cancer treatment, but it’s important to understand the difference between integrative medicine and alternative medicine.

These days many cancer doctors support integrating other methods into their care, as long as patients understand the difference between “integrative,” or holistic medicine, and “alternative medicine,” which seeks to replace approved treatments and often has little or no serious science to support it.

Feel the fear & let it go: How can meditation help?

More Resources

Living with CLL

You’ve made it to the end of our Living With CLL series. We hope you were able to find some helpful information and some of the support you are looking for as you continue your cancer journey.

Be sure to check out SurvivorNet’s designated section on CLL to learn even more about the basics of your disease, the specific type you have, and what you can expect during the treatment process — and beyond.

We also provide regular updates on any new treatment options as well as inspiring survivors stories.

At SurvivorNet, we’re here to help survivors like you navigate the complex world of treatment and living with cancer.


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