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 depends on how advanced your CLL is, your age and general health, and if you have certain gene changes. Be sure you know the goal of your treatment, how long it will take, the potential side effects, and what to do if something doesn’t feel right. This helps you take care of yourself and partner with your doctor in getting the care and support you need.
Here are some of the options your doctor will consider. You may also take other types of medicines to help prevent complications, such as to prevent infections while you’re going through treatment.
CLL Treatments
Chemotherapy for CLL
These drugs disrupt the life cycle of cancer cells. They damage the DNA of those cells or stop them from reproducing. 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.
Chemo side effects include nausea, vomiting, diarrhea, and fatigue. You can also get infections more easily. You can take medicine to help with some of these problems. Most of these side effects peak 3 to 5 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 affects from chemo. These may cause you to adjust your dose or schedule so that you can have enough time to recover.
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. The time to start treatment is when your cancer grows or you have symptoms.
Through routine visits and tests – or when you report symptoms or changes between visits – your doctor will determine whether you need to start treatment. During these checkups, your doctor will ask if you've had symptoms like weight loss or night sweats. You'll have exams to look for any swelling in your lymph nodes, spleen, or liver. That would be a sign that you have a lot of cancer cells in those areas and need treatment. You may also need to start treatment if your doctor finds cancer cells in places like your kidneys, lungs, and spine.
You'll also get blood tests during your visits. A complete blood count, or CBC, measures the number of blood cell types in a sample of your blood. Red blood cells carry oxygen to your organs and tissues. Platelets help your blood clot. A drop in the number of these cells can be another sign that your cancer has grown.
A blood test called lymphocyte doubling time measures the amount of time it takes your lymphocyte count to double. Lymphocytes are white blood cells in your immune system. CLL causes many abnormal lymphocytes to build up in your bone marrow. If the number of these cells doubles in less than 6 months or increases by more than 50% in 2 months, your cancer may have progressed.
You may have follow-up visits with your doctor every 2 to 3 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 4 to 6 months.
You’ll also need to watch for symptoms on your own. Between doctor visits, let your medical team know right away if you have any new symptoms, such as:
- Swollen glands in your neck, under your arms, or in your groin
- Night sweats
- Unplanned weight loss
- A fever of 100.4 F or higher
- Extreme tiredness
- A feeling of fullness in your belly
- Bleeding or bruising more easily than usual
Targeted Therapy for CLL
Targeted drug therapies are often the first-line treatment – that is, the first approach 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 once or twice a day.
Kinase inhibitors
These target certain proteins in and on cancer cells that help them grow and spread. These treatments cut 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.
Examples include acalabrutinib (Calquence), duvelisib (Copiktra), ibrutinib (Imbruvica), and idelalisib (Zydelig). You take them in pill form, usually once or twice a day.
Side effects can happen during or any time after your treatment -- even years later. Most go away or can be treated, but some may last. Side effects depend on the drug, the dose, and your overall health. Most targeted therapies cause low blood cell counts, and many can cause diarrhea, fatigue, fever, and severe 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. Examples are alemtuzumab (Campath), obinutuzumab (Gazyva), ofatumumab (Arzerra), and rituximab (Rituxan).
These treatments attack a type of white blood cellcalled B lymphocytes that are abnormal in people with CLL and help cancer cells grow. As a result, cancer cells eventually die off. You get this medicine through an IV at a 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.
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 the drug. 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, and headache.
Your doctor will also give you drugs to help prevent more serious side effects like:
- Chest pain
- Heart racing
- Facial and tongue swelling
- Coughing
- Trouble breathing
- Dizziness and fainting
If you’ve ever had hepatitis B, MABs can make the hepatitis virus active again. It’s rare, but some MABs raise the chance 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 and trouble with your heart and nervous system. You’ll get lots of fluids and certain medicines to try to prevent these problems. Tumor lysis syndrome needs to be treated right away. Symptoms usually start 2 to 3 days after treatment. Another possible complication includes a rare brain disease known as progressive multifocal leukoencephalopathy (PML). Call your doctor right away if you have severe 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 drugs 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.
You might have some side effects after taking this drug, such as:
- Low levels of certain white blood cells (neutropenia)
- Low red blood cell counts (anemia)
- Diarrhea
- Nausea
- Respiratory infections (like a cold)
- Low platelet counts (thrombocytopenia)
- Tiredness
Other serious side effects include pneumonia and other severe infections, but these are less common. Another possible side effect is TLS.
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 drugs cyclophosphamide (Cytoxan) and fludarabine (Fludara) plus the monoclonal antibody drug 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
Radiation may cause side effects such as:
- Skin redness
- Fatigue
- Low blood cell counts
- GI upset, such as nausea, vomiting, and diarrhea
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. An enlarged spleen also lowers your red blood cell and platelet counts. Your doctor may first recommend that you get radiation to shrink your spleen. If that doesn’t work, you may need to have it removed. This works, but it can make you more likely to get infections.
Stem-Cell Transplant
Even if other types of treatment allow for all signs of CLL to go away, it can still come back later. This is especially true for types of CLL that are harder to treat, like 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. Blood-forming stem cells can come from:
- Blood (for a peripheral blood stem cell transplant, called PBSCT)
- Bone marrow (for a bone marrow transplant, called BMT)
- Umbilical cord blood
There are two main types of transplants:
Autologous transplant. Your own stem cells are collected from your blood or bone marrow and used for your treatment. But the issue with this is that leukemia cells could be accidentally collected alongside stem cells.
Allogeneic transplant. These stem cells come from another person, or a donor. This person needs to match your tissue types to lower the risk of issues. This usually end up being 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 severe or fatal side effects though. It's not suggested for older people or individuals 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
These medicines include lenalidomide (Revlimid). They work on the immune system. Doctors sometimes consider them if no other treatment works. There can be serious side effects, such as blood clots, nerve damage, and severe 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 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, and other stresses that may come with having cancer.
This is supportive care for CLL. It doesn't actually treat CLL but can help with the problems linked to this cancer and its treatment.
Some examples of palliative care include:
- Treatments to prevent infections (intravenous immunoglobulin (IVIG), antibiotics and antivirals, or 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 – which means they have normal blood counts and no symptoms of cancer – most eventually relapse. In that case, you may get several treatments over the course of your life with CLL.
What You Can Do
Cancer treatment is challenging. You don’t know ahead of time how you’ll feel. 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 and make you feel better overall.
Caution on Supplements
Since there’s no cure for CLL, so some people look to natural treatments. EGCG from green tea and curcumin from the herb turmeric 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 shows.
Show Sources
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SOURCES:
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