When to Consider Changing Your CLL Treatment Plan

Medically Reviewed by Sabrina Felson, MD on March 19, 2023
3 min read

There are common ways to treat chronic lymphocytic leukemia (CLL), but there isn't a therapy that works for everyone. You may need to go several different routes to find the right plan for you. That includes standard therapy your doctor can give you or new drugs through clinical trials.

The goal of any CLL treatment is to lessen your symptoms and get you closer to long periods with no signs or symptoms of disease. You and your doctor can discuss whether it's a good idea to change your treatment. There are several things to consider.

You have CLL-related symptoms. One of the main goals of CLL treatment is to help you feel better. If some of your old symptoms come back or never go away, tell your doctor. It could be a sign your CLL isn't well-managed.

Some symptoms to watch for include:

  • Extreme tiredness
  • Low-grade fever with no infection
  • Weight loss for no reason
  • Swollen lymph nodes
  • Night sweats for longer than a month
  • Belly pain or a sense of fullness
  • Lots of infections
  • Easy bleeding or bruising

Your cancer keeps growing. The aim of any CLL treatment is to lessen the number of cancer cells in your body. Sometimes your cancer may not respond to therapy. That's called refractory CLL. It's also possible for a drug to help at first and then stop working later on.

It's important to see your health care team on a regular basis. These checkups help your doctor track how well your treatment is going. That'll help them know if they need to make any changes to your care plan. Your appointments may include repeat versions of the same tests used to diagnose your cancer in the first place, such as:

Physical exam. You doctor will ask how you're feeling and check for physical signs of CLL. They'll feel for swollen lymph nodes, like in your neck. They'll press on your belly to see if your spleen or liver have gotten bigger. This is a great time to tell your doctor about any symptoms or side effects that are bothering you. They may be able to prescribe medicines to ease them. If a medication is causing serious side effects, they may consider adjusting your treatment plan. 

Blood tests. CLL creates cancer cells in the bone marrow that can squeeze out some of your healthier blood cells. If your treatment isn't working well, you may have:

  • Low red blood cell count. This is also called anemia. You need a healthy amount of red blood cells to carry oxygen to other cells in your body. Without enough, you can get tired really easily.
  • Low platelet count. Platelets help your blood clot. That's why you may bleed or bruise easily when they're too low.
  • High white blood cell count. CLL causes your bone marrow to make lots of white blood cells called lymphocytes. This makes it harder for your body to fight infections.

Bone marrow test. You may get a bone marrow aspiration and biopsy. That's when a doctor uses a long, thin needle to get some of your liquid bone marrow and then some of the core of your bone marrow. Your doctor can compare results from earlier bone marrow tests to see if your treatment is working.

Fluorescence in situ hybridization (FISH). People with CLL often have changes in certain chromosomes. This test uses a special dye to show changes in your cancer cells. Specifically, your doctor is looking for altered genes that help CLL cells survive. Your doctor can use your blood or bone marrow for the FISH test.

It's good to be curious about your medical care. Make a list of everything you want to know. Write it down or print it out before you go to your appointment. That way you don't forget what you want to ask.

Here are some questions to get you started:

  • How often do I need follow-up visits?
  • What are all these lab tests for?
  • What are all of my treatment options?
  • How will treatment help?
  • Will I have side effects?
  • How can I ease my CLL symptoms right now?
  • How much will my new treatment cost?
  • Can I get help with my medical expenses?
  • How long will it take for treatment to work?
  • What if I change my treatment and it doesn't help?