You might be ready to start your first treatment for chronic lymphocytic leukemia (CLL). Or maybe you need a second treatment because your cancer has come back. Either way, you probably wonder what’s involved and how it might make you feel.
Your treatment can depend on:
- How advanced your CLL is
- Your age
- Your general health
- If you have certain gene changes
Talk with your health care team about your:
- Treatment goal
- How long it will take
- Potential side effects
- What to do if something doesn’t feel right
You can also take other types of medicines to help prevent complications and infections while you’re going through treatment.
This helps you take care of yourself and partner with your doctor to get the care and support you need. Here are some of the options your doctor may consider and tips on choosing the best treatment for your CLL.
CLL Treatments
Watchful waiting
Your medical team won't just leave you alone during watchful waiting. They'll monitor your symptoms and give you tests to check your cancer. You could be in the watchful waiting phase for years because CLL can be a slow-moving cancer.
Through routine visits and tests — or if you have change between visits — your doctor helps decide when to start treatment. You’ll watch for changes and tell your doctor if you've had symptoms between doctor visits. If your cancer grows or you have symptoms, you and your doctor will talk about the best treatment option.
What happens during my watch and wait exams?
Your doctor will do an exam to look for any swelling in your:
- Lymph nodes
- Spleen
- Liver
Swelling in these organs can be a sign of cancer cells and a reason for treatment. You'll also get treated if your doctor finds cancer cells in places like your kidneys, lungs, or spine.
You'll also get blood tests and follow-up visits during the monitoring period such as:
Complete blood count (CBC). Counts the type and number of blood cells in your blood, including:
- White blood cells that protect you from infections
- Red blood cells that carry oxygen to your organs and tissues
- Platelets that clot your blood
A drop in your cell numbers can be another sign that your cancer has grown.
Lymphocyte doubling time. This blood test looks at the amount of time it takes your lymphocytes to multiply (double). These white blood cells help your immune system protect your body from infections.
But CLL causes many abnormal lymphocytes to build up in your bone marrow. Your cancer may have progressed if your cell number:
- Doubles in less than six months
- Increases more than half in two months
Follow-up visits. Your doctor may see you every two to three months in the first year after your diagnosis. After that, if your cancer is stable, your doctor might space out the visits to once every four to six months.
Chemotherapy for CLL
These medicines disrupt the life cycle of cancer cells. They damage the DNA of those cells or stop them from multiplying. You get chemo in cycles that give the medicine time to work before your next dose. You may get chemo as tablets or by IV.
You can also get infections more easily. You can take medicine to help with some of these problems. Most of these side effects peak three to five days after you get chemo and go away after your treatment ends, though some last longer.
When it's possible, it's best to get the full course and full dose of chemo. It's also important to keep the cycles on schedule. This gives you the best chance of getting the best benefits from your treatment.
But sometimes, you might have serious side effects from chemo. These may cause you to adjust your dose or schedule so that you can have enough time to recover.
Targeted therapy for CLL
Targeted therapies are often the first-line treatment — that is, the first treatment your doctor will try — for advanced or symptomatic CLL. People who relapse might get targeted therapy, too. These medicines attack specific traits on cancer cells or processes that help the cells grow, multiply, or survive. You take them as pills, injections, or infusions.
Kinase inhibitors
These target certain proteins in and on cancer cells that help them grow and spread. These treatments lower the number of cancer cells being made.
Your doctor may recommend a kinase inhibitor if you have certain gene glitches, like del(17p) and TP53, or if your cancer comes back after treatment. For some people, they may work better than chemo.
Side effects for kinase inhibitors
You can get side effects any time during or after your treatment — even years later. Most go away or can be treated, but some may last. Side effects depend on your medication, the dose, and your overall health.
Some common targeted therapy side effects include:
- Low blood cell counts
- Diarrhea
- Fatigue
- Fever
- Serious skin problems
You may need to take targeted medicines every day for months or even years. For some people, the side effects over time can be too much. Be sure you understand how long your treatment will last and what side effects to expect.
Monoclonal antibodies (MABs)
These mimic or boost the action of your own immune system. They attach to your cancer cells so your immune system can destroy them.
These treatments attack a type of white blood cellcalled B lymphocytes that can become abnormal with CLL and help cancer cells grow. As a result, cancer cells eventually die off.
You get this medicine through an IV at your doctor’s office or infusion center. You might get this treatment alone or with chemotherapy.
Several kinds of monoclonal antibodies treat CLL. Different ones target different cancer-promoting proteins.
Side effects for monoclonal antibodies
If you’re older than 65 or have other health problems, some combination therapies may be too hard on your body and may not work very well. Your doctor might try using monoclonal antibodies without chemo meds.
Side effects vary, depending on the type of antibody in your medication. In general, MABs make you more likely to get infections, including serious ones, even months after your treatment. Your doctor may prescribe medicine to help your body make more white cells to prevent infections.
During your infusion, you may notice mild side effects like:
Itching
Chills
Fever
Nausea
Rashes
Fatigue
Headache
Your doctor will also give you medicines to help prevent more serious side effects like:
- Chest pain
- Heart racing
- Facial and tongue swelling
- Coughing
- Trouble breathing
- Dizziness and fainting
Complications frommonoclonal antibody treatments
It's rare, but you can get complications with monoclonal antibody treatment like reactivated infections, tumor lysis syndrome, or brain disease.
Hepatitis B. If you’ve ever had hepatitis B, monoclonal antibodies can make the virus active again.
Tumor lysis syndrome. It’s rare, but some monoclonal antibodies can also raise your risk of a serious condition called tumor lysis syndrome. It happens when the medicine kills cancer cells faster than your body can get rid of them. This can cause kidney failure or trouble with your heart and nervous system.
You’ll get lots of fluids and certain medicines to prevent these problems. Tumor lysis syndrome needs to be treated right away. Symptoms usually start two to three days after treatment.
Progressive multifocal leukoencephalopathy (PML). Another complication includes a rare brain disease called PML. Call your doctor right away if you get serious vomiting and diarrhea, trouble peeing, feel dizzy, or have seizures.
BCL-2 inhibitor
BCL-2 is a protein in CLL cells that allow them to live longer than they should. BCL-2 inhibitors are medicines that target the protein. These can be helpful in treating CLL.
Venetoclax (Venclexta) is a type of BCL-2 inhibitor. It's a pill taken once a day. It can be used alone or with a monoclonal antibody.
Although less common but serious side effects include:
- Pneumonia
- Other serious infections
- Tumor lysis syndrome
Combination therapy
Many people with CLL get a combination of therapies that can include chemotherapy, targeted therapy, and monoclonal antibodies. An example of a commonly used combination includes the chemo medicines cyclophosphamide (Cytoxan) and fludarabine (Fludara) plus the monoclonal antibody rituximab (Rituxan).
Radiation
It’s not the main treatment for CLL, but you might get radiation to help treat some of the cancer’s symptoms. Radiation can:
- Shrink swollen organs, such as your spleen, that press on other organs and cause pain
- Ease pain from bone damage due to leukemia cells that grow in the bone marrow
Surgery
It’s rare for doctors to recommend surgery for CLL. The disease spreads through your bone marrow, so surgery can’t cure it.
But sometimes, CLL enlarges your spleen so much that it presses on your other organs. A bigger spleen can also lower your red blood cell and platelet counts.
Your doctor may first recommend that you get radiation to shrink it. If that doesn’t work, you may need to have it removed. This works, but it can make you more likely to get infections, too.
Stem Cell Transplant
Even if other treatments help your CLL go away, it can still come back later. This is especially true for certain kinds of CLL that are hard to treat. For example, ones with chromosome 17 deletions and TP53 mutations. Or CLL might not respond to normal treatments.
A stem cell transplant uses higher doses of chemo to treat CLL. Sometimes your doctor will also use radiation therapy. After this, you'll get a transplant of blood-forming stem cells to help replace bone marrow.
There are two main types of transplants:
Autologous transplant. Your own stem cells are collected from your blood or bone marrow for your treatment. But leukemia cells could be accidentally collected alongside stem cells.
Allogeneic transplant. These stem cells come from another person. This person needs to match your tissue types to lower the risk of issues. Often, it's a close relative, like a brother or sister.
Sometimes, a matched unrelated donor is used (but it's less common). This transplant type could cause serious or fatal side effects. It's not suggested for older people or people who have health issues.
Experts don't yet know exactly how helpful stem cell transplants are for people with CLL. Most of them are done as a part of a clinical trial.
Immunomodulators
Immunomodulator medicines work on your immune system to kill cancer cells. These medicines include lenalidomide (Revlimid). Doctors sometimes consider them if no other treatment works.
There can be serious side effects, such as blood clots, nerve damage, and serious birth defects if taken during pregnancy.
Managing Chronic Lymphocytic Leukemia
Steroids
Corticosteroids (“steroids”) curb inflammation and are used to treat many conditions. They may also be part of your CLL treatment and help control side effects from chemo. Your doctor may prescribe one, such as prednisone, as part of your CLL treatment.
Steroids can have side effects with long-term use, so your doctor will manage those risks.
Palliative care
If your doctor mentions palliative care, you’ll want to know what that is, too. The goal for palliative care is to help you feel better — physically and emotionally — while you’re going through treatment. Palliative care aims to:
- Ease pain
- Stress
- Anxiety
- Depression
- Fatigue
- Other stresses that may come with having cancer
This is supportive care for CLL. It doesn't treat CLL, but it can help you with problems linked to your cancer and its treatment.
Some examples of palliative care include:
- Treatments to prevent infections such as intravenous immunoglobulin (IVIG), antibiotics, antivirals, and certain vaccines
- Treatments for low blood counts
What’s the Best CLL Treatment for You?
There’s no single best treatment for CLL. These treatments haven’t been compared to one another in studies, so there’s no way to know if one is better than the others.
Your doctor will decide what to give you based on your:
- Test results
- Age
- Overall health
- Other medical problems
- Cancer stage
- Individual genetics
- Concerns about side effects
While some people with CLL go into complete remission — they have normal blood counts and no cancer symptoms — most eventually relapse. In that case, you may get several treatments over the course of your life with CLL.
Caution on Supplements
Since there’s no cure for CLL, some people may look to natural treatments. EGCG from green tea and curcumin from the herb turmeric may show promise. In early lab tests, they kill CLL cells but don’t harm healthy ones. But it’s too soon to know if that’s true in people or what the right dose is.
Remember, supplements can’t treat cancer and don’t take the place of medical treatments. If you’re thinking about taking something, talk to your oncologist first so you can find out what’s safe and what the research really shows.
What You Can Do
Although challenging, it can be hard to predict ahead of time how you’ll feel about cancer treatment. But you can keep your body strong so it bounces back as fast as possible.
Aim to eat healthy, mostly plant-based foods. If you don’t feel like eating, you may do better with small snacks throughout the day.
Regular exercise is also key. It can help you handle symptoms like pain, fatigue, and depression. Choosing healthy habits can help make you feel better overall and live fully with CLL.
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
Texas Oncology: “Early-Stage Asymptomatic Chronic Lymphocytic Leukemia,” “Symptomatic Advanced Chronic Lymphocytic Leukemia.”
American Cancer Society: “Typical Treatment of Chronic Lymphocytic Leukemia,” “Chemotherapy for Chronic Lymphocytic Leukemia,” “Monoclonal Antibodies for Chronic Lymphocytic Leukemia,” “Targeted Therapy for Chronic Lymphocytic Leukemia,” “Immunotherapy for Non-Hodgkin Lymphoma," "Stem Cell Transplant for Chronic Lymphocytic Leukemia," "Supportive or Palliative Care for Chronic Lymphocytic Leukemia."
Targeted Oncology: “Current and Emerging Treatment Options in Chronic Lymphocytic Leukemia.”
Blood: “Abbreviated regimen with 4 cycles of fludarabine, cyclophosphamide and rituximab (FCR) in physically fit patients with chronic lymphocytic leukemia who achieve early complete remission with undetectable minimal residual disease: safety and efficacy follow-up results of a single center experience.”
Macmillan Cancer Support (UK): “FCR Chemotherapy.”
American Society of Clinical Oncologists’ Cancer.net: “Leukemia -- Chronic Lymphocytic -- CLL: Types of Treatment.”
Leukemia & Lymphoma Society: “Chemotherapy and Drug Therapy.”
Cancernetwork (online version of journal Oncology): “Ibrutinib Superior to Chemoimmunotherapy in Treatment-Naïve CLL,” “Reasons for Ibrutinib Discontinuation Linked With Length of CLL Survival.”
Canadian Cancer Society: “Tumor Lysis Syndrome,” “Targeted Therapy for Chronic Lymphocytic Leukemia.”
Cancer Research U.K.: “Steroids.”
GetPalliativeCare.org: “What Is Palliative Care?”
American Institute for Cancer Research: “Vegetarian and Vegan Diets,” “Physical Activity and Cancer.”
National Cancer Institute: “Eating Hints: Before, During, and After Cancer Treatment,” "Zanubrutinib’s Approval Improves Targeted Treatment for CLL."
Leukemia Research: “Green tea polyphenol ‘epigallocatechin-3-gallate’, differentially induces apoptosis in CLL B-and T-Cells but not in healthy B-and T-Cells in a dose dependent manner.”
Leukemia & Lymphoma: “Rapamycin and curcumin induce apoptosis in primary resting B chronic lymphocytic leukemia cells.”
FDA: "FDA Grants Accelerated Approval to Pirtobrutinib for Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma."
