After a chronic lymphocytic leukemia (CLL) diagnosis, it’s normal to have questions. Thanks to your local library or your smartphone, you can do some research on your own, but nothing can take the place of talking to your doctor.
Your doctor has helped CLL patients before, so they understand how the disease progresses. They can tell you what to expect along the way and give you an insider’s view about how to treat and live with CLL.
What Are the Next Steps After Being Diagnosed With CLL?
After a diagnosis, your doctor will let you know what type of CLL you have. They may do more tests (like an X-ray, CT scan, or PET-CT scan) to see if (and if so, where) the cancer has spread. This information can be critical because it can determine the course of treatment – and your outcome.
This is an important time to ask all the questions you want, because you’ll need to come up with a plan together. Your questions and the expertise from your doctor(s) can help you make important decisions about how to manage your CLL.
What Will Happen if I Don’t Treat My CLL Right Away?
You may think that you should begin treatment right after you’re diagnosed. But if your CLL is in an early stage, it actually may be better to watch and wait. Research shows that people in earlier stages of CLL may not benefit from starting treatment right away. If you and your doctor don’t plan to treat it just after diagnosis, they’ll still monitor you to see if it worsens. Some people live years without needing treatment.
Over time, you will probably need treatment. And while there’s no cure for CLL, there are a lot of treatments available (and in the works).
When Is the Best Time to Treat CLL?
If you don’t have symptoms, your CLL is in an early stage, and/or your CLL doesn’t seem to worsen, your doctor may not recommend treatment right away. That’s because treating CLL in its early stages may not be helpful at all and instead can just cause side effects and complications.
This is why asking your doctor questions is so important – you may not want to have treatment just yet if you can’t be sure it will help.
There’s even a test to help you see if you can benefit from a specific treatment. A lot of people do not get this testing and wind up going on a treatment that doesn’t work – and they could have known before they started treatment.
If your doctor doesn’t think you should get treatment yet, they’ll still monitor your condition. If your CLL gets worse, they will likely then suggest that you start treatment.
Ask your doctor how often you should visit and/or have bloodwork done as you keep tabs on your condition. Make sure to stick to your appointments so you can closely monitor your condition.
What Types of CLL Treatments Exist?
Oncologists, or cancer doctors, stay on top of the latest in cancer care, so they can be a great resource to learn about the latest treatments (and treatments on the horizon). CLL treatments can include chemotherapy, immunotherapy, targeted medications, or a bone marrow transplant (also called a stem cell transplant). They can also include a combination of any of those. Your doctor may recommend a stem cell transplant if they think that may help.
Your doctor may use radiation if you’ve got swollen lymph nodes or an enlarged spleen in one part of the body. Your doctor may suggest removing your spleen if it’s causing symptoms.
Remember that there are sometimes multiple options when it comes to the way you treat CLL. For example, ask about which medications may be best for you. Your doctor can also give you information about treatments that are coming soon as well as clinical trials.
In addition to questions about what kind of treatment you should have, you can also ask your oncologist:
- Is there anything I should be doing to get ready for treatment?
- How will we know if the treatment is working?
- Will I have any limitations during treatment?
- What happens if the treatment isn’t working or the cancer returns?
If your CLL treatment isn’t effective, all hope isn’t lost. That’s when you’ll need to talk to your doctor and ask about other options.
Are There Any Side Effects From CLL Treatment?
Side effects from CLL treatment can vary, but may include:
- Bowel changes, including diarrhea
- Nausea and/or vomiting
- Changes to taste/smell
- Shifts in bone marrow blood counts
- Feeling tired
- Early menopause
- Inflamed lining of (or mucus glands in) the mouth
- Impacts on fertility
- Shifts in confidence related to body image and/or sexual activity
Your doctor can tell you which side effects to expect, as some may be more likely with a specific treatment. They can also tell you how to best deal with a specific side effect. Ask upfront so you get a response based on what the doctor knows about your overall health as well as the treatment.
Am I a Candidate for a Clinical Trial?
Ask your doctor if a clinical trial may be right for you. They can also put you in touch with active clinical trials, and give you resources so you can see results of trials.
Can CLL Cause Any Other Conditions?
Yes. You may be prone to infections or low blood counts. There are a few ways your doctor can help with this. And it’s certainly something to ask questions about.
Infections. You might not have enough antibodies to fight infection. That’s why your doctor may want to monitor these antibodies (immunoglobulins) in your blood.It is recommended that people with CLL get influenza (flu) and pneumonia vaccines. Talk with your doctor before getting any vaccine. They can also use donor antibodies – called intravenous immunoglobulin, or IVIG – to boost your levels. Another way to prevent infections that are common with other treatments is to give you antiviral or antibiotic medications.
Low blood counts. This can cause fatigue, dizziness, and shortness of breath. Your doctor may suggest a transfusion. Your doctor may check your bone marrow to see what’s causing the low blood count.Medications or spleen removal can help in some cases.
Other cancers. CLL survivors have a higher risk for getting some other types of cancer. It can lead to more serious cancers such as diffuse large B-cell lymphoma (DLBCL), Hodgkin’s lymphoma, acute myeloid leukemia (AML), prolymphocytic leukemia, or acute lymphocytic leukemia (ALL).
Other complications. There are other complications that can happen if you have CLL. Your doctor can advise you on palliative care for CLL symptoms and side effects from treatment.
How Can My Care Team Help?
If you have CLL, you probably have more than just one doctor at your disposal. While your oncologist may be the best person to go to with clinical questions, don’t hesitate to reach out to nurses, social workers, and other members of your care team for other concerns. They can answer questions or put you in touch with the right person to ask.
Photo Credit: Jose Luis Pelaez Inc / Getty Images
National Cancer Institute: “Chronic Lymphocytic Leukemia Treatment (PDQ) – Patient Version,” “Platelet.”
Mayo Clinic: “Chronic Lymphocytic Leukemia.”
CLL Society: “TB4T! One of the Most Important Things You Can Do,” “What Doctors Say About Test Before Treat.”
American Cancer Society: “Living as a Chronic Lymphocytic Leukemia Survivor,” “Questions to Ask About Chronic Lymphocytic Leukemia,” “Supportive or Palliative Care for Chronic Lymphocytic Leukemia,” “Typical Treatment of Chronic Lymphocytic Leukemia.”
Leukaemia Foundation: “Side Effects of CLL Treatment.”