If you’ve been diagnosed with chronic lymphocytic leukemia (CLL), you’re likely wondering about how your treatment might affect you. Will you have any side effects? All medications can cause side effects, including those that treat cancer. But not all people get them or have the same ones. Luckily there are ways to help reduce the risk of side effects or how much they bother you. Learning about CLL treatment side effects can help you be prepared.
Understanding Chronic Lymphocytic Leukemia (CLL) and Treatment
Chronic lymphocytic leukemia is a cancer of the bone marrow, which produces blood cells. If you have CLL, your bone marrow makes too many lymphocytes, a type of white blood cell. There is no cure for CLL, but there is treatment. The goal of CLL treatment is to slow down the growth of the cancer cells so they stop producing too many lymphocytes, and then to keep you in that state for as long as possible.
While the treatments kill the cancer cells, they also kill healthy cells, which is why you may have some side effects.
Common Chronic Lymphocytic Leukemia (CLL) Side Effects
The side effects that you might have depend on the type of CLL treatment you get. Most often, you'll start out on a targeted or monoclonal antibody therapy. They have similar side effects to chemotherapy but are usually milder. Sometimes, you may get chemotherapy or others medicines combined with corticosteroids, like prednisone.
The side effects can involve many parts of your body, but most often they affect the lining of your gastrointestinal (GI) tract: your mouth, throat, stomach, and intestines (gut). Some of the side effects – like anemia or repeated infections – happen because the therapy can cause low levels of red blood cells, white blood cells, and platelets.
Aside from anemia and a weakened immune system, these are the most common side effects:
- Diarrhea or constipation
- Easy bruising, higher risk of bleeding
- Extreme fatigue
- Hair loss
- Rash
- Heartburn, nausea, vomiting, loss of appetite
- Infections
- Neuropathy, a numb or tingling feeling in your hands and feet
- Sores in your mouth (mucositis)
Tips on Managing CLL Treatment Side Effects
Some side effects are worse than others, but there are some steps you can take to help manage them. First, you can start by being prepared. For example, there are medications to help manage nausea or constipation. Staying as hydrated as possible can help lessen several side effects, too. This means drinking eight to 10 glasses of liquids a day (soup counts, too!). If you’re nauseated, small sips throughout the day add up fast.
Keep a journal or log about your treatment and side effects. This will be helpful for you and your cancer care team. Note the type of chemotherapy you have and when. Then write down if and when the side effects begin and how they affect you. Don’t forget to make note of when they go away or lessen – if they do.
Here are some more tips for you to try.
Fatigue
- Take rest breaks. This isn’t the time to try to power through your day. Short naps are best, but if you can’t nap, at least sit down and take some time to try to relax. You can meditate or practice mindful breathing.
- Plan your days and activities so you’re not overwhelmed. Ask for help from friends and family. They can do things from preparing meals to picking up your children from school.
- Be as active as possible. Even taking walks or doing light exercises can help lessen overall fatigue.
- Ask your doctor if you can take any supplements. Don’t start any on your own though, because some can interfere with cancer drugs.
When to call your doctor: If your fatigue is affecting how you function and you can’t do your regular activities.
Nausea, vomiting, or no appetite
- Ask your doctor for a prescription for nausea and vomiting and take it as directed.
- Stay hydrated. Tea, flat ginger ale, and unsweetened fruit juices might stay down.
- Avoid strong odors; get some fresh air if you can.
- Avoid foods and drinks that could trigger nausea, like those with caffeine or are greasy.
- Eat small amounts of food throughout the day rather than three big meals.
When to call your doctor: If your nausea drugs aren’t helping, you vomit more than three times within 24 hours, or you can’t even keep fluids down. Also if you start to feel faint or you have heartburn or pain.
Constipation
- Stay hydrated.
- Move around as much as you can, even if it’s just a walk around the block.
- Eat high-fiber foods, such as fruits, vegetables, and whole grains. Prunes and prune juice can help, too.
- Ask your doctor if over-the-counter (OTC) medications – such as stool softeners or laxatives – are safe for you to take.
When to call your doctor: If it’s been two or three days since you’ve had a bowel movement or it’s becoming harder to have one.
Diarrhea
- Keep hydrated. You need to replace the fluid you’re losing. Choose something with electrolytes, like sports drinks and fruit juice, along with water.
- Don’t eat foods that can trigger diarrhea, such as spicy, high-fat, or high-fiber foods. Avoid caffeine, too.
- Don’t eat as much fiber.
- Ask your doctor if you can take an OTC medication.
- Follow the BRATY diet, which includes bananas, rice, applesauce, white toast, and yogurt.
When to call your doctor: If your anti-diarrhea medication isn’t helping or it gets worse after a couple of days. If you have stomach pain. If you see any blood in your stool, your stool is black, or you start having sores around your anus.
Pain and sores in your mouth
- Use a gentle, alcohol-free mouthwash; rinse your mouth and gargle well every four to six hours. Do not swallow it. You can also use salt water or a salt and baking soda solution.
- Don’t eat acidic, spicy, salty, and sugary foods.
- Don’t drink alcohol.
- Don’t smoke.
- Suck on ice chips.
- Use a straw.
- Brush your teeth very gently, with a soft toothbrush or a foam swab.
- Try using artificial saliva products.
- Ask your doctor if you should use Magic Mouthwash or a prescription gel that coats and protects tissue in your mouth.
When to call your doctor: If you have trouble eating or drinking because of the pain; the sores keep coming back, spread, or don’t go away. If you think you may be getting an infection (fever, pus from the sores).
Reduce the risk of infections
- Wash your hands often and well (for 20 or 30 seconds), especially before eating or drinking, and after touching surfaces a lot of other people touch, like doorknobs and elevator buttons.
- Stay away from people who are sick; wear a mask out in public.
- Ask your doctor or cancer care nurse if you should shower with an antiseptic skin cleanser.
When to call your doctor: If you have a fever, which is 100.4 F or higher, have chills or are shivering. If you have a new cough or sore throat, or if you have any other signs, like pus from a wound (even a surgical incision or IV site) or burning when you pee.
Easy bruising or bleeding
- Use an electric razor instead of a blade when you shave.
- Don’t do activities where you may cut yourself or get hit (such as contact sports).
- Use a soft toothbrush.
- Don’t use rectal suppositories or enemas. If you are constipated, ask your doctor what you should do.
When to call your doctor: If you notice blood when you pee, poop, or cough up mucus. If your gums bleed. If your stools are much darker than usual. Call 911 if you become confused or have trouble with your speech, vision, or walking, have a very bad headache, or have weakness or numbness on one side of your face or body.
Hair loss
- Ask your cancer care team if they have scalp cooling treatment and if it’s an option for you.
- Be gentle with your hair, using mild shampoos and conditioner every two to four days.
- Use shampoo that has sunscreen so it can protect your hair and scalp from the sun.
- Keep your head covered when you’re outside. In the summer, this protects your scalp from the sun. In the cooler months, it keeps your head warm.
- Use satin or silk pillowcases.
Neuropathy
- Stay active.
- Don’t smoke.
- Avoid alcohol.
- Protect your hands and feet in cold weather.
- Don’t walk barefoot; choose sturdy, closed shoes.
- Protect your fingers and hands when doing things that could burn you (like cooking) because you may not feel the heat.
When to call your doctor: If the feeling in your hands or feet is getting worse or spreading to other fingers and toes. If you’re having a hard time doing fine motor tasks, like holding a spoon or zipping a zipper, or you’re having trouble walking.
For any side effect, you might consider trying complementary therapies like acupressure, meditation, yoga, and aromatherapy, to name a few. Check with your doctor first. And always tell the practitioner that you are having CLL treatment. It’s important that they know.
Some people never get CLL treatment side effects and others do. Being prepared will help you if you do have side effects, and you may help limit how much they affect you.
Show Sources
Photo Credit: iStock/Getty Images
SOURCES:
Canadian Cancer Society: “Targeted Therapy for Chronic Lymphocytic Leukemia.”
Cleveland Clinic: “Mucositis.”
Leukemia & Lymphoma Society: “Treatment.”
Mayo Clinic: “Chemotherapy,” “Chemotherapy Nausea and Vomiting: Prevention Is Best Defense,” “Cancer Fatigue: Why It Occurs and How to Cope,” “Mouth Sores Caused by Cancer Treatment: How to Cope.”
Memorial Sloan Kettering Cancer Center: “Managing Your Chemotherapy Side Effects.”
National Cancer Institute: “Chronic Lymphocytic Leukemia Treatment (PDQ®)–Patient Version,” “Prednisone.”
