CLL Diagnosis: Where to Start and How to How to Navigate the Journey

CLL Diagnosis: Where to Start and How to How to Navigate the Journey

If you or a loved one were recently diagnosed with Chronic Lymphocytic Leukemia (CLL), we want to support you in your healthcare journey. We applaud you for being courageous and taking an active role in researching your condition and managing your care so you can make the best healthcare decisions.  

This guide will walk you through what CLL is, standard treatment protocols, how to talk to your oncologist, and how to find doctors who can give you quality second opinions.

What is Chronic Lymphocytic Leukemia (CLL)?

According to The National Cancer Institute, Chronic Lymphocytic Leukemia is a type of cancer in which the bone marrow makes too many lymphocytes. 

Lymphocytes are white blood cells made in your bone marrow that help your body fight infection. When you have CLL, your body creates an excessive number of abnormally-functioning lymphocytes. Abnormal lymphocytes, also called leukemia cells, no longer fight infection properly and may overtake normal-functioning white blood cells, red blood cells, and platelets. 

Chronic Lymphocytic Leukemia typically occurs in middle-aged adults, and accounts for about one-third of leukemia diagnoses. It is also the second most common type of leukemia in adults. CLL is called “chronic” because it can progress more slowly than other leukemia types and grow for years without being diagnosed. Though Chronic Lymphocytic Leukemia represents 1.2% of all new cancer cases in the U.S., its survival rates are higher than other common cancers. Eighty-six percent of patients survive five years or more after diagnosis.

Factors That Affect Treatment and Prognosis for Chronic Lymphocytic Leukemia 

Once you receive a CLL diagnosis, your treatment options will depend on your disease stage and other factors. Below we will outline typical treatment options and what factors doctors might weigh to assess the direction of treatment and your prognosis (chance of recovery). 

Note that this is general information gleaned from research, and it’s not a substitute for care or additional discussions with your doctor. Your doctor will assess your condition and devise a treatment protocol that meets your specific medical needs.  

When you receive a CLL diagnosis, your treatment may depend on your blood cell counts, age, overall health, symptoms, physical examination, and other health factors your doctor deems necessary to evaluate.  

According to the Leukemia & Lymphoma Society, “Doctors use staging to help them predict chronic lymphocytic leukemia’s (CLL’s) progression and develop an appropriate treatment plan. Two staging systems, the Rai system, and the Binet System, have been used throughout the world.”

Here is the Rai system for staging CLL: 

Factors That Affect Treatment and Prognosis for Chronic Lymphocytic Leukemia

Your prognosis will also depend on several factors related to the results of your diagnostic tests, your response to treatment, and other factors. According to The National Cancer Institute, a Chronic Lymphocytic Leukemia prognosis depends on the following:

  • Whether there are certain gene changes, such as TP53 or IgVH mutations.
  • Whether lymphocytes have spread throughout the bone marrow.
  • Whether the red blood cell and platelet counts are low.
  • Whether the white blood cell count is increasing quickly.
  • The stage of the cancer (how far the cancer has spread).
  • The results of certain blood tests, such as the beta-2 microglobulin test.
  • The patient’s age and general health.
  • How quickly and how low the leukemia cell count drops during treatment.
  • Whether the CLL gets better with treatment or has recurred (come back).
  • Whether the CLL progresses to lymphoma or becomes prolymphocytic leukemia.
  • Whether the patient gets another type of cancer after being diagnosed with CLL.

Overview of Treatment Options for Chronic Lymphocytic Leukemia

Depending on your CLL diagnosis and the stage of progression, your doctor may or may not treat you right away. The American Cancer Society lists the following treatments doctors may use once you are ready.

Chemotherapy

Your doctor may prescribe chemotherapy taken orally or intravenously to control or kill cancer cells. To allow your body time to recover, your doctors may prescribe chemotherapy at varying times (chemo cycles), typically every three to four weeks. 

Since chemotherapy also kills healthy cells that divide quickly, you may experience some side effects such as nausea and vomiting, fatigue, hair loss, mouth sores, and loss of appetite. 

Side effects generally subside after your treatment concludes. Ask your doctor for medications or protocols to lessen side effects so you can feel more comfortable during treatments. Doctors may also give you drugs to counteract other chemotherapy effects, such as an increased chance of infection. 

Monoclonal Antibodies

Monoclonal antibodies are synthetic versions of human antibodies. Antibodies attach themselves to specific cells (in this case, cancer cells) to destroy them. According to the American Cancer Society, your doctor may prescribe monoclonal antibody treatment plus chemotherapy, a standard protocol. 

Several types of monoclonal antibodies exist, and your doctor will prescribe the right one depending on your response to other treatments and other health factors. Similar to chemotherapy, monoclonal antibodies can cause side effects and result in secondary infections. Talk to your doctor about the risk factors and side effects.  

Targeted Therapy Drugs

According to the American Cancer Society, “Targeted therapies are drugs that specifically target the changes inside cells that cause them to become cancer. Unlike standard chemotherapy drugs, which work by attacking rapidly growing cells in general (including cancer cells), these drugs target one or more specific proteins on or in chronic lymphocytic leukemia (CLL) cells. When treatment is needed for CLL, a targeted drug is often part of the first line of treatment.”

Each drug may also cause side effects or have contraindications your doctor can discuss with you. 

Stem Cell Transplants

The American Cancer Society cites chemotherapy, immunotherapy, and/or targeted therapy as treatments to reduce the number of cells and improve symptoms, helping patients control Chronic Lymphocytic Leukemia for a long time. 

However, certain CLL cases involving genetic variations may be more challenging to treat and fail to respond to standard treatment protocols. Also, CLL patients can relapse, especially the more complicated cases. For example, after treatment with the frequently-prescribed FCR chemoimmunotherapy regimen (fludarabine, cyclophosphamide, and rituximab), approximately 6% of patients relapse within six to 12 months, and 14% relapse within two years. 

In non-responsive cases, higher chemotherapy doses may be more effective, but the treatment could damage bone marrow. Doctors may suggest patients get a stem cell transplant after chemotherapy to restore the marrow. According to the American Cancer Society, it’s unclear if stem cell transplants help patients diagnosed with Chronic Lymphocytic Leukemia, and the procedures are often part of a clinical trial. 

Other CLL treatments may include radiation therapy or splenectomy, but they are rarely used. 

Clinical Trials

Cancer research includes clinical trials to determine the efficacy and safety of new cancer treatments and study whether new treatment options are better than standard treatments. Patients can participate in clinical trials at any time. Each clinical trial will study different types of patients:

  • Have not yet received treatment
  • Received treatment but are not getting better
  • Want to prevent a relapse or reduce side effects

If you want to participate in a clinical trial, talk to your doctor about your options and eligibility. Also, consult medical databases like MediFind to find updated research on CLL and clinical trials in your area. 

MediFind is an extensive medical database of more than 2.5 million of the world’s foremost doctors who are experts in specific conditions. The platform also provides information on clinical trials, studies, and advanced treatments specific to a condition. 

When you search MediFind for Chronic Lymphocytic Leukemia, you can access past and current clinical trials. Below is the CLL clinical trials results page.

CLL Clinical Trials

Clicking on each clinical trial will provide more information on the trial, inclusion criteria, and a link to the active clinical trial on the original website.

CLL Clinical Trials details

Treatment Goals and What to Discuss With Your Doctor

If your doctor says your condition doesn’t require immediate treatment, he or she may wait until the cancer progresses to a particular stage before suggesting a treatment protocol. 

According to The Leukemia & Lymphoma Society, treatment aims to slow the cancerous cells’ growth and provide periods of remission where your symptoms improve and there are no longer signs of it. 

Before you participate in a treatment plan, you might want to discuss the protocol and your expectations with your doctor. Here are some items to discuss:

  • What are the goals of the treatment? When is a treatment successful?
  • What are the possible side effects during and after the treatment?
  • How can I manage and lessen side effects?
  • Which side effects warrant contacting the doctor or going to the ER?
  • Is it possible to access advanced medical treatments via a clinical trial?

Good communication will also help you receive the best care for your condition. Be open with your doctor, and request your medical records should you want to get a second opinion. If you do not understand what is being communicated, ask your doctor to explain and provide more detail. The more you know and comprehend, the better you can make informed decisions that lead to positive health outcomes. 

Getting a Second Opinion

Getting a second opinion on a cancer diagnosis is quite common and a recommended practice if you are diagnosed with CLL. The Leukemia & Lymphoma Society recommends getting a second medical opinion if you’re concerned about a specific doctor or treatment: 

Leukemia, lymphoma, myeloma, and myelodysplastic syndromes are each different types of cancers. What’s more, each disease has subtypes. This means that the signs of the disease, how it’s diagnosed and treated and the expected outcomes vary. That’s why it’s essential to have the right diagnosis before you begin or continue with treatment.

You may want to get a second or third medical opinion after receiving a diagnosis and before beginning or continuing treatment, especially if you’re concerned about whether a specific doctor or treatment center is right for you. It’s okay to let your doctor know that you’d like a second opinion; most doctors are used to patients seeking multiple opinions and even encourage it.

According to hematologist/oncologist at Columbia University Medical Center Dr. Nicole Lamanna, many doctors welcome second opinions, and in some cases, it may be required by insurance. Because CLL is a diagnosis that may last for years, it’s important to feel comfortable with your doctor. 

Use MediFind’s Second Opinion Finder to find the best oncologist near you who is an expert in Chronic Lymphocytic Leukemia. MediFind’s extensive database connects patients with more than 2.5 million doctors who are experts in specific conditions and at the forefront of research in their fields. A second doctor may have different insights into CLL treatment and care than your original doctor.

If you search for a second doctor via MediFind, you will enter your current doctor, diagnosis (CLL), and desired location. MediFind will then provide a list of doctors who have specific expertise in studying the disease and treating patients.  

CLL second opinion finder

MediFind’s Second Opinion Finder also identifies specialists in a way that may be different from other doctor-finding tools. The cutting-edge tool gathers data not readily accessible to health consumers and uses it to evaluate doctors, so you have the best chance of getting quality second opinions. Read more here to find out how MediFind evaluates doctors and assigns a specific level of expertise. 

Getting Better Care, Faster

Navigating your healthcare journey after receiving a CLL diagnosis may have its ups and downs. But becoming an advocate for your own health, digging into a little research, and asking the right questions can help you get the best care and treatment options. Our mission is to help you get better care, faster, so you can feel comfortable with your doctors and get the highest quality of care. 

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