Understanding Chronic Lymphocytic Leukemia
- Former priest Bill Mouser’s cancer journey took an unexpected turn when excruciating shoulder pain led to the discovery of chronic lymphocytic leukemia (CLL) with Richter’s transformation, and he is now exploring clinical trial therapies after multiple treatments.
- Chronic lymphocytic leukemia (CLL) is a type of cancer that starts in bone marrow, the spongy tissue in the center of your bones where new blood cells are made. CLL affects the immature blood cells that give rise to white blood cells called lymphocytes, which help your body fight infections.
- In about ten percent of CLL patients, their disease transforms into a more aggressive lymphoma called Richter’s Transformation and it is much more difficult to treat.
- Chronic lymphocytic leukemia (CLL) care has transformed dramatically in the past decade, shifting from chemotherapy to targeted drugs that offer deeper remissions, fewer side effects, and even treatment‑free periods for many patients.
- Not everyone needs treatment right away — about one‑third of people with early, symptom‑free CLL may never require therapy, making “watch and wait” an evidence‑based and often safer first approach.
- If you have a cancer screening coming up or have recently had one, you may have questions you want answered. Check out SurvivorNet’s proprietary AI tool “My Health Questions,” designed specifically for patients and caregivers.
Sharing his journey with The Patient Story, Mouser explained how he was diagnosed with DLBCL in 2018 after finding lumps and experiencing tightness on the left side of his neck. Testing, including scans and biopsies, confirmed the diagnosis—and he was treated with R-CHOP chemotherapy and radiation.
Read MoreChronic Lymphocytic Leukemia (CLL): Overview
Mouser continued, “The doctor came back after a bit with the radiologist report. He said, ‘The radiologist has looked at your CT, and he can’t find anything in your shoulder. Anything. Instead, I recommend you go to an ortho guy to check it out further, but we can’t find anything.
“However, he does notice that your spleen is twice the size it was a year ago, and he said that it’s crumbling. In view of your earlier treatment for lymphoma, you should probably check back with your oncologist pretty quick and have him follow this up.”
He later admitted that he didn’t understand the connection between his spleen and the pain he was feeling in his shoulder.
However, Mouser later learned why, explaining, “Much later, when I finally connected with the doctor at UT Southwestern, he said, ‘Oh, well, I’ll tell you what that was. It was your spleen. The nerve pathways from the spleen and your shoulder travel together. We call it referred pain. Your spleen is really in an uproar, but it’s not going to hurt down there. It hurts up here. I have other patients with the same problem.'”
Mouser later discovered that his initial diagnosis was incomplete. He actually had an atypical form of chronic lymphocytic leukemia (CLL) that had progressed into diffuse large B-cell lymphoma (DLBCL), a rare event known as Richter’s transformation, a more aggressive lymphoma.
RELATED: When Diffuse Large B-Cell Lymphoma Comes Back: The First Steps After a Relapse
He made clear that his original oncologist had correctly identified and treated the DLBCL because the aggressive lymphoma was truly there. The part that went undetected was the underlying CLL that had led to the lymphoma’s development.
After his diagnosis, Mouser began six cycles of R-EPOCH chemotherapy. While the treatment was not expected to be curative, the goal was to reduce the tumor burden and control the disease before moving on to the next step in his treatment plan.
Mouser responded well to therapy, and a PET scan showed enough improvement to begin planning a stem cell transplant. But delays—COVID backlogs, additional testing, donor coordination— pushed the timeline back.
CAR T-Cell Therapy: How it Works, and Who Can Get It
He then found a new lump, and tests confirmed the cancer had returned and spread to his inguinal lymph nodes, taking the transplant off the table. His care team pivoted to a clinical trial for an innovative immunotherapy called BiTE (Bispecific T-cell Engager) therapy, with CAR T-cell therapy, a lymphoma treatment that “trains” your own immune cells to treat cancer, as a possible next step.
Mouser said he plans to remain on his current clinical trial treatment until doctors determine whether it is no longer effective, the disease begins progressing again, or scans show no detectable signs of cancer. At that point, his medical team may consider CAR T-cell therapy as the next treatment option.
Following twice-weekly infusions, he will undergo a PET scan to evaluate his response. He says he is already noticing signs of improvement, including shrinking lymph nodes that he can feel near the surface of his body, though he cannot tell whether deeper areas, such as his spleen or iliac region, have responded.
RELATED: Determining When CLL Treatment is Needed
Mouser concluded, expressing optimism in his fight, “I’m very hopeful for myself and hopeful for people who have the problem I’ve got. This is one of the nastier ones to have than the more ordinary kinds of lymphomas.
“When I first checked out with my cardiologist about a year ago, he kind of rolled his eyes. He said, ‘The advances in hematology and blood cancer, we don’t have anything like that in cardiology. You’re very fortunate if you’re going to be really sick to have that sickness, because there’s a lot of help that’s just coming down the pipe real fast.’ I agree from what I’ve seen, and I’m very hopeful I might actually lick this thing. I’m in it for the long haul.”
Understanding Chronic Lymphocytic Leukemia (CLL)
Chronic lymphocytic leukemia (CLL) is a type of cancer that starts in bone marrow, the spongy tissue in the center of your bones where new blood cells are made. CLL affects the immature blood cells that give rise to white blood cells called lymphocytes, which help your body fight infections.
Scientists don’t know exactly what causes CLL. A genetic change in white blood cells causes them to become abnormal and to divide faster than usual. These abnormal cells crowd out healthy cells. Eventually, so many of the cancer cells are produced that they start to spread to other organs.
What doctors know and still need to learn about CLL, from leukemia specialist Dr. Nicole Lamanna
Fortunately, researchers have learned a lot about CLL over the years. What they’ve learned has helped them develop new and more targeted treatments that work better against this cancer, and that can now extend survival for people who are diagnosed.
What Increases Your Risk for CLL & What Are The Symptoms?
Risk factors are things that make you more likely to develop CLL. Having these risks doesn’t mean you will definitely get this type of cancer–only that you are slightly more likely to be diagnosed.
Your risk for CLL may be higher if you:
- Are over age 50. CLL is most common in older adults. About 9 out of 10 people with this cancer are older than 50. Yet it is possible to be diagnosed at other ages.
- You’re Caucasian. White people are more likely to develop CLL than are people of other races.
- You have other family members with CLL. Having a sibling, parent, or other close relative who’s been diagnosed with a blood and bone marrow cancer might increase your risk.
- You’ve been exposed to certain chemicals. Some herbicides and pesticides (for example, Agent Orange used during the Vietnam War) can make you more likely to develop this cancer.
As for symptoms of the disease, it’s uncommon for people with CLL to notice anything early on, according to SurvivorNet’s experts. They say someone can live with CLL and feel perfectly fine.
People often have no symptoms of CLL until their disease has progressed, says Dr. Matthew Davids, Associate Director of the Dana-Farber CLL Center
After you’ve had this cancer for awhile, you may notice symptoms like:
- Swollen lymph nodes
- Tiredness
- Fever
- Pain in the upper left part of your belly
- Night sweats
- Weight loss
- Frequent infections
If you have any of these symptoms, it doesn’t necessarily mean that you have CLL. But it’s worth talking to your doctor if they’re out of the norm for you.
How To Determine a CLL Diagnosis
Your doctor has several ways to diagnose CLL, including blood tests, genetic tests, bone marrow tests, and imaging tests.
- Blood tests. A blood test checks the number of cells and cell types in your blood, to look for any abnormalities that could signal CLL. Your doctor might also check for increased amounts of certain proteins or enzymes in your blood.
- Flow cytometry. This test looks for certain markers that help identify cancer cells in a sample of blood or bone marrow.
- Bone marrow tests. These tests use a small sample of fluid or tissue that your doctor removes from your bone marrow during a biopsy. The samples are examined in a lab to see if they have the size, shape, and other characteristics of cancer.
- Genetic tests. Tests such as fluorescence in situ hybridization (FISH) analyze the genetic material inside the leukemia cells to look for abnormalities. This gives doctors a better sense of how to move forward with treatment.
SurvivorNet expert, medical oncologist Dr. Julie Vose, discusses the importance of genetic testing following a CLL diagnosis
You may need additional tests, including x-rays and imaging scans, if there’s a possibility that the cancer has spread to other parts of your body. If your doctor is concerned that leukemia cells might have reached your brain or spinal cord, you may get a spinal tap, which analyzes a small sample of fluid from around the spinal cord.
Treating CLL
Unlike other cancers, CLL is a chronic disease that people can live with for many years. Your doctor will find the most appropriate treatment for you based on the type of symptoms you have, and whether your cancer is growing slowly or is more aggressive.
In the early stages of CLL, treatment might not be necessary. Your doctor may do something called watchful waiting. This doesn’t mean that your doctor will ignore you, but that you’ll get regular check-ups to see if your symptoms get worse or your cancer has spread.
Once it is time to start treatment, your doctor will help you choose from these options:
- Radiation therapy uses high-energy x-rays to stop cancer cells from growing.
- Chemotherapy uses powerful drugs to stop cancer cells all over your body from dividing.
- Targeted therapy is a group of treatments that blocks proteins and other substances the cancer needs to grow.
- Immunotherapy such as CAR T- cell therapy amplifies your own immune system’s response to help it locate and fight the cancer.
- Bone marrow (stem cell) transplant is a way for your doctor to give you very high doses of chemotherapy. Chemo damages immature blood cells, called stem cells, in your bone marrow. After you get chemotherapy drugs, you’ll receive healthy stem cells from yourself or a donor to replace the ones treatment damaged.
These are the standard treatments for CLL, but they’re not the only ones. BTK inhibitors are a pill you take every day to reduce the chance of the cancer coming back. Another is venetoclax (Venclexta), which comes in a pill. This is typically combined with another type of drug called a monoclonal antibody, to keep people with this cancer in remission. You’ll need to stay on these drugs long-term to keep your cancer from returning.
Doctors may also recommend that you enroll in a clinical trial, if certain therapies have stopped working or if another treatment is needed to boost effectiveness.
Clinical trials test out new, and possibly more effective treatments for cancers like CLL. Enrolling in one of these trials could give you access to a state-of-the-art drug before it’s available to everyone else.
Contributing: SurvivorNet Staff
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