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) Treatment 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 like your:
Mouth
Throat
Stomach
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.
When to call your doctor: If your fatigue is affecting how you function and you can’t do your regular activities.
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.
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.
When to call your doctor: If your 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.
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).
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.
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.
Ask your cancer care team if they have a 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.
Hair loss is more common with chemo and can start slowly. Talk to your doctor about any questions you may have before taking your medication.
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.”
