Chronic lymphocytic leukemia (CLL)

Chronic lymphocytic leukemia (CLL) is a blood cancer that starts in the bone marrow, the soft, spongy tissue inside bones. In CLL, the bone marrow makes too many abnormal white blood cells. These cells don’t work properly and live longer than they are supposed to, leaving less room for the marrow to make normal red blood cells, white blood cells and platelets. Eventually, these unhealthy cells spill out of the bone marrow and begin spreading to other parts of the body. With fewer healthy blood cells, the body can’t fight infections or stop bleeding.

CLL is classified as chronic because it is a slow-growing form of lymphoma. This means that a person with CLL may not experience symptoms for months or even years. When symptoms do appear, the most common are:

• Swollen lymph nodes
• Tiredness and fatigue
• Fever and sweating at night
• Unexpected weight loss
• Frequent infections or sickness
• Pain in the upper left area of the abdomen

Relapsed CLL

Doctors perform cytogenetic and molecular testing to see how likely it is that someone’s CLL will relapse or come back. To do this, doctors analyze the chromosomes and genes inside the leukemia cells to look for certain changes that may indicate a higher or lower chance of relapse.

Refractory CLL

Refractory disease is the term used for chronic lymphocytic leukemia that doesn’t enter remission at all after the initial treatment. People with refractory CLL still have a chance of achieving remission with other therapies and treatments, including an allogeneic transplant.

No matter what type of CLL you have, it’s important to ask your doctor for a copy of your test results and to explain what they mean. Remember, if your CLL has a high risk of relapse and you’re healthy enough for transplant, it’s important to schedule see a transplant doctor right away.

A blood or marrow transplant (BMT), also called a bone marrow transplant or blood stem cell transplant, replaces unhealthy bone marrow with healthy blood-forming cells from a donor. For some people, a successful transplant can cure their CLL.

What type of transplant is used for CLL?

For CLL, doctors use an allogeneic transplant, meaning the donated cells come from someone else. These healthy blood-forming cells can come from:

• A family member
• An unrelated donor
• Umbilical cord blood

What to expect during the transplant process for CLL

Although each person’s journey is unique, bone marrow transplantation for chronic lymphocytic leukemia typically follows a series of distinct phases. From initial therapy to the infusion of donor cells and ongoing recovery, here’s how the transplant process generally works:

• Preparation: You’ll begin with chemotherapy (and sometimes radiation) to destroy the unhealthy marrow. This step, called conditioning therapy, makes room for new, healthy blood-forming cells.
• Transplant: Next, healthy donor cells are delivered through an intravenous (IV) catheter, often referred to as a stem cell infusion. These cells travel to the inside of your bones and begin producing new blood cells.
• Recovery: Overall, recovery can take several months to a year (or more), from preparation through post-transplant. From the start of conditioning to leaving the hospital can take weeks to months. You’ll then spend additional time recovering near the transplant center and at home. During this period, your transplant team carefully monitors you, helping prevent and manage any side effects or complications.

When to see a transplant doctor for chronic lymphocytic leukemia

If you’re diagnosed with CLL, you should see a transplant doctor right away, especially if:

• Your CLL has a high risk of relapse
• Comes back quickly after chemo
• Doesn’t improve after chemo

Your first appointment with a transplant doctor

Scheduling an appointment with a doctor to discuss your CLL diagnosis is the first step to finding a cure. At your first appointment, the transplant doctor will:

• Review your medical history
• Talk with you about CLL treatment options
• Discuss the risks and benefits of BMT transplant
• Recommend the best time for you to get a transplant and prepare for treatment
• Start a donor search even if you don’t need it right away. This can help you get a transplant faster if it’s needed later

The role ethnicity plays in finding a match

Patients that come from ethnically diverse backgrounds will often have a harder time finding a matching bone marrow donor. This is because of genes called human leukocyte antigens (HLAs), which are the codes inside your body doctors use to help find a match. HLAs are inherited, which means it will be easier to find a match using a patient and donor that share the same ancestry.

Unfortunately, not all ethnicities are equally represented on the registry.

Learn more about the importance of diversity

Questions to ask your doctor about CLL and the transplant process

Ask questions so you can best understand the treatment options available for your chronic lymphocytic leukemia. Questions you may want to ask include:

• What are my chances of curing CLL or entering long-term remission if I get a transplant? If I don’t get a transplant?
• Does the type of CLL I have make a difference on how well transplant might work for me?
• Does my current health or age affect how well transplant might work for me?
• What do my cytogenetic and molecular markers mean for my treatment?
• What are the possible side effects of a bone marrow or blood stem cell transplant? How can they be reduced?
• How might my quality of life change over time due to CLL, with or without transplant?

By asking these questions, you can better understand your options and plan the next steps in your treatment journey.

Learn more about planning for transplant