Chronic lymphocytic leukemia (CLL) is usually a slow-growing blood cancer. Most people with CLL don’t notice any problems in the early stages of the disease.
“In fact, we can do what we call ‘watch and wait’ for about 60%-70% of patients with a diagnosis,” says Javier Pinilla, MD, PhD, a hematologist-oncologist at Moffitt Cancer Center in Tampa, FL. “And about 20% may never require therapy.”
But when CLL crowds out the healthy cells in your bone marrow and you get symptoms, you may need treatment.
That’s what happened to Larry Saltzman, MD, a retired family doctor in Sacramento, CA. He was diagnosed with CLL in 2010. After 3 years of living with early-stage disease, Saltzman’s cancer got worse. Since then, it’s come back several times. He’s had many kinds of treatments, including chemo, targeted medicines, two rounds of CAR T-cell therapy, and most recently, a bone marrow transplant.
“I have really been through it. I’ve had all sorts of setbacks and side effects. But you have to do whatever it takes to get back in remission,” Saltzman says.
From the physical to the emotional side, here’s what to know if your cancer advances to a later stage.
What Is Advanced or Late-Stage CLL?
What’s tricky is doctors don’t normally use the terms “advanced” or “late-stage” to describe CLL, Pinilla says.
“We have defined stages, but they aren’t really helpful like they are if you are thinking about the stages of a solid tumor, where you have an early stage you can cure and a later stage where you have disease that has spread,” he says.
With CLL, there are many things that can predict how a person will do, with the stage being only one.
For instance, the cancer’s genetic makeup may be an important sign of how well a patient will do, Pinilla says. Saltzman had what’s called cytogenetic testing. It gives information about chromosomes (parts of DNA) in cells. The test looking at his white blood cells showed that he had a more aggressive form of CLL. “My case is more extreme. What I’ve experienced, it’s not the usual course of events in CLL,” he says.
The National Cancer Institute (NCI) notes that in addition to staging, CLL is grouped as:
- Asymptomatic. You have few or no symptoms.
- Symptomatic or progressive. You have serious symptoms or changes in blood counts.
- Recurrent. Your cancer has come back after a period of time.
- Refractory. Your cancer doesn’t get better, even though you’re having treatment.
“So if you talk about late-stage or advanced CLL, you might say it’s a situation where a patient requires therapy, or you might say it’s when numbers spike rapidly, or when a patient stops responding to a treatment. It can really vary,” Pinilla says.
What Are the Symptoms of CLL That Has Advanced?
If CLL progresses, you may notice symptoms, including:
- Fatigue
- Weakness
- Swollen lymph nodes
- Fever, chills, or night sweats
- Weight loss
- Pain or feeling full after eating
But Pinilla says that some people may not show any signs of the disease.
What Are the Treatment Options for Advanced CLL?
If your CLL gets worse or you have symptoms, your doctor will tell you about your treatment options. “CLL is not curable, but it’s very treatable,” Pinilla says. “We’re still debating exactly which therapies are better, in certain patients, with certain genetic features. But the bottom line is a patient can enjoy a very excellent strategy.”
Your choices may depend on your overall health, the genetic makeup of your cancer, and how aggressive your disease is.
Some options include targeted medicines, chemotherapy, and immunotherapy. These drugs can be used in combination with each other.
Certain people with CLL who are high-risk or whose cancer comes back may benefit from a stem cell transplant. This procedure replaces damaged blood cells with healthy ones, usually from a donor. Saltzman had a bone marrow transplant in 2023. His younger brother, who happened to be a perfect match, donated his cells.
CAR T-cell therapy is another, new treatment option for CLL. It’s now FDA-approved for people with CLL that’s still growing or has returned after two targeted medicines have been tried. With this treatment, special immune cells called T cells are removed and changed in the lab. Then they are infused back into the patient, where they find and destroy cancer cells.
Saltzman had CAR T-cell therapy as part of a clinical trial, before it was approved for CLL. He says studies that test new treatments are particularly important if your cancer returns and your options start to dwindle.
“I really just lived through clinical trials. I deemed each one as giving me a bridge to the next one. My hope was that the bridges would be longer and the new drugs coming out would be more effective,” he said. “I was really just buying time, so to speak, and it worked.”
Almost a year after his bone marrow transplant, Saltzman is in remission and feeling well.
Living Well With CLL
When cancer keeps going or comes back, it can be upsetting. It might help to learn as much as you can about the disease and try to keep a positive outlook when you can. At the same time, let yourself feel all your emotions. These may vary from person to person and even day to day. You could feel anger, sadness, fear, shock, or disbelief.
You can help lower stress with activities like meditation or yoga.
Healthy lifestyle habits, like eating a well-balanced diet, getting enough sleep, and exercising daily, might also help you feel better, Pinilla says.
Saltzman eats healthy foods and exercises regularly. He used to run marathons, but lately, he walks 2 miles a day, rides his Peloton bike, and lifts light weights.
“You can’t just sit around. You have to get moving,” he says.
Pinilla says it’s also important to stay up to date on vaccines. “CLL is a disease of the immune system, so patients need to protect themselves with vaccines,” he says.
To help keep from getting infections, use good hygiene. Wash your hands often, especially before you eat. Also, stay away from crowded places, use a mask when you go out, and avoid sick people.
It’s key to have good communication with your medical team. Talk to your doctor about your treatment goals, your concerns, and how you’re feeling. Report any new symptoms to your doctor right away.
Lastly, Pinilla says people with CLL are at a higher risk for other types of cancer, which are called secondary cancers. He says you should have regular cancer screening tests, such as colonoscopies, mammograms, Pap smears, and PSA blood tests.
How to Find Support
You may feel better if you talk with someone else about your emotions.
Who you talk to is up to you. You might just want to talk to a family member or friend. Or someone from your community or a counselor.
Saltzman says a designated caregiver is a must. That could be a spouse, family member, friend, or even a hired person. “You really almost can’t go through any of this without having that kind of relationship with somebody who’s watching over you,” he says.
He also notes that it’s important to have a medical advocate who knows all about CLL. Ideally, this person will walk you through your treatment options and explain them to you. He says advocates are easier to find at larger academic medical centers.
There are also support groups, where you can talk to other people dealing with the same diagnosis. Several nonprofit organizations, such as the American Cancer Society, Cancer Care, CLL Society, and the Leukemia and Lymphoma Society provide ways for people with CLL to connect with others.
Show Sources
Photo Credit: FatCamera/Getty Images
SOURCES:
Larry Saltzman, MD, Sacramento, CA.
Javier Pinilla, MD, PhD, hematologist/oncologist, Moffitt Cancer Center, Tampa, FL.
UpToDate: “Patient education: Chronic lymphocytic leukemia (CLL) in adults (Beyond the Basics).”
National Cancer Institute (NCI): “Chronic Lymphocytic Leukemia Treatment (PDQ®)–Patient Version.”
American Cancer Society: “Signs and Symptoms of Chronic Lymphocytic Leukemia,” “Stem Cell Transplant for Chronic Lymphocytic Leukemia,” “Typical Treatment of Chronic Lymphocytic Leukemia,” “Immunotherapy for Chronic Lymphocytic Leukemia,” “Preventing Infections in People with Cancer.”
American Society of Clinical Oncology (ASCO): “Dealing With Cancer that Comes Back.”
