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.
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 3-5 days after you get chemo and go away after your treatment ends, though some last longer.
These are drugs that stop cancer cells from growing. They include two types of drugs: monoclonal antibodies and kinase inhibitors.
Monoclonal antibodies (MABs) 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).
If you’re older than 65 or have other health problems, some combination therapies may be too hard on your body and not work very well. Your doctor might try using monoclonal antibodies (MABs) without chemo meds.
You take these medications in pill form, usually once or twice a day.
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.
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. Call your doctor right away if you have severe vomiting and diarrhea, trouble peeing, feel dizzy, or have seizures.
Kinase inhibitors 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 duvelisib (Copiktra), ibrutinib (Imbruvica), idelalisib (Zydelig), and venetoclax (Venclexta). 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.
Chemo Plus Targeted Therapies
Many people with CLL get chemo as well as targeted therapy drugs. It’s often the best choice if you’re healthy and younger than 65. Your doctor may call this strategy “chemoimmunotherapy.”
“FCR” is a common combination. It includes the chemo drugs fludarabine (Fludara) and cyclophosphamide (Cytoxan), plus the monoclonal antibody drug rituximab (Rituxan). Each FCR cycle lasts 28 days. You could have up to six cycles of FCR for a total over 6 months.
Corticosteroids (“steroids”) curb inflammation and are used to treat many conditions. They may also be part of your CLL treatment and to 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 work to help manage those risks.
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.
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.
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. Feel free to enjoy green tea and turmeric-flavored foods -- that can’t hurt. But 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.