A Guide to Empowering Patients Living With Chronic Lymphocytic Leukemia (CLL)
Understanding CLL and finding the right treatment for you
When you’re diagnosed with CLL, life can feel like a blur After a CLL diagnosis, you may be asking “Why me? Is there anything I could have done to avoid getting CLL?” At this time, there isn’t an answer since no one knows exactly what causes CLL.
You’re not alone
CLL is the most common type of adult leukemia in North America and Europe1
• CLL affects ~4.5 per 100,000 adults in the US each year1 • More than two-thirds of people diagnosed with CLL are older than 601 • CLL is more common in men than in women1
What happens in CLL? Although the cause of CLL is not known, we do know that B cells—a type of white blood cell that’s an important part of your immune system—become genetically damaged.2
In CLL, abnormal B cells grow out of control and crowd out healthy bone marrow and blood cells. Abnormal B cells survive longer than healthy cells and slowly build up in the body over time. When this happens, you may develop anemia (low red blood cell count), an increased tendency to bleed (lower platelet count), and an increased risk of infections (lower white blood cell count).2 Your doctor will make sure you have blood tests to get a more detailed picture of your condition. This will help your doctor make a plan for your treatment.
You may not feel any CLL symptoms for years It can come as even more of a shock that you have CLL because you don’t feel anything With the slow buildup of abnormal B cells, many people don’t have any symptoms for at least a few years. Routine blood tests, such as a complete blood count (CBC) or total protein level, may show anemia or a high protein level before you notice any symptoms.2 What are the signs and symptoms of CLL? As CLL starts to get worse, signs and symptoms may appear that are caused by CLL. Talk to your doctor if you have any of the following2,3: • Weakness • Feeling tired • Weight loss • Fever • Night sweats • Enlarged lymph nodes • Pain or a sense of “fullness” in the belly • Excess bruising, bleeding, frequent or severe nosebleeds, and bleeding gums
The moment your life changed
It’s normal to feel what you’re feeling Like other major life-changing events, everyone handles a diagnosis in their own way. Some common reactions and issues may include4,5: • Fear, uncertainty, and anger • Shock, disbelief, and sadness •T rouble listening to, understanding, or remembering what people tell you during this time •L ooking more closely at your religious beliefs, personal and family values, and what’s important in your life You may have to rearrange and reprioritize some things in your life as you start treatment. Some of these life changes might include6: •A dapting your daily routine as you go to appointments and through treatment •N urturing relationships with others and knowing how to talk to them about your diagnosis •A djusting your work life
If you don’t need to start treatment right away, you may be placed on “watch and wait”
You may feel uncomfortable not doing anything about a condition as serious as CLL during the “watch and wait” period. It’s important for you to talk to your doctor about any concerns you may have regarding your treatment plan. Early CLL treatment studies have shown7: • Aggressive treatment in patients with early-stage disease may not prolong survival • There may be risks of early treatment, including potential side effects and treatment complications • Patients may build up a resistance to the drugs used and would not be able to use them again when treatment for later-stage CLL is needed
You have options for your CLL treatment When it’s time for treatment, it’s important to know the options available to you. These include8: • Chemotherapy: A type of drug (infusion or oral administration) that enters the bloodstream to kill CLL cells throughout the body • Oral medications: Agents that block the growth of cancer cells by working against a specific part of that cell (eg, blocking an abnormal protein) • Radiation therapy: Given by a machine that uses high-energy rays to kill CLL cells. It can be administered to the whole body or at a specific part of the body where the cancer cells have been found • Stem cell transplant: A procedure that is performed after radiation therapy or chemotherapy that replaces cancer and blood stem cells in the bone marrow with a transfusion of healthy blood stem cells (either your own preharvested cells or donor cells) • Supportive care: Care focused on relieving CLL-related symptoms, such as infection prevention and treatment for low blood cell counts Talk to your healthcare professional about which options may be right for you. FISH testing and finding your treatment People with certain types of CLL do not respond well to some therapies, such as chemotherapy. One of these CLL types is known as “del 17p CLL.” Del 17p means that part of a chromosome (17) is missing. It’s relatively rare at diagnosis, but more common in relapsed patients.2,9 So, for your doctor to choose a therapy that’s right for you, it’s important that genetic testing be done before you start treatment. A test to determine if you have del 17p CLL or other genetic abnormalities is called FISH (fluorescent in situ hybridization).2
Take an active role in your care
When living with CLL, it’s important to be an advocate for your own care to get the support you need.
Here are some tips that can help you get the most out of your doctor appointments: • Before your appointments - Research—Educating yourself helps you become the best advocate for your care - Keep a journal—Writing down how you’re feeling can help you prepare for visits and remember important topics to discuss - Bring a friend—This person can help you ask questions and can take notes during your appointments • During your appointments - Try to ask the important questions first so you have time to discuss your biggest concerns - Tell your doctor how you feel, especially about any symptoms - If you’re confused by anything your doctor says, ask the doctor to explain it again • After your appointments - Add upcoming doctor appointments to your calendar - Follow up with your healthcare team if you have any questions
Be open and honest with your healthcare team
• Whenever your doctor prescribes treatment, tell the doctor if10: - You’ve had this treatment before - You’ve had an allergic reaction to this treatment - You have or have had any other medical conditions - You’ve recently been exposed to chickenpox or shingles - You’ve ever been treated with radiation therapy or other cancer therapies - You take any vitamins, minerals, herbs, or other supplements - You’re planning a family or have any concerns about intimacy, birth control, fertility, pregnancy, or breastfeeding - You take any other drugs (prescription or over-the-counter) - You use illegal or street drugs, which can increase the toxicity of certain cancer drugs
Get the most out of your visits by asking questions
Sometimes it’s hard to remember what to ask your doctor when you have the chance. Here’s a list of questions that may help you get more out of your doctor appointments:
Is my CLL serious enough to treat right now? How will I know if my CLL is getting worse? What kind of treatment may be right for me? What kinds of side effects should I expect? What have been the experiences of other people with CLL?
Surround yourself with support • Become part of a community. Support groups and online message boards can help you connect with other people on the same path • Lymphoma Support Network (www.lymphoma.org) matches lymphoma survivors and caregivers with volunteers who have gone through similar experiences • Invite friends and family to be part of your team. To help you get the support you need, make sure to tell them exactly how they can help. You might ask a family member to: - Be with you at doctor appointments - Go grocery shopping for you or with you - Do something fun with you to take your mind off treatment
References: 1. National Cancer Institute. SEER stat fact sheets: chronic lymphocytic leukemia (CLL). http://www.seer.cancer.gov/statfacts/html/clyl.html. Accessed August 28, 2015. 2. Leukemia & Lymphoma Society. Chronic lymphocytic leukemia. https://www.lls.org/content/ nationalcontent/resourcecenter/freeeducationmaterials/leukemia/pdf/cll.pdf. Revised 2014. Accessed August 28, 2015. 3. American Cancer Society. Chronic lymphocytic leukemia. http://www.cancer.org/acs/groups/cid/documents/webcontent/003111-pdf.pdf. Accessed September 22, 2015. 4. American Cancer Society. The emotional impact of a cancer diagnosis. http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/ copingwithcancerineverydaylife/a-message-of-hope-emotional-impact-of-cancer. Revised January 28, 2015. Accessed August 28, 2015. 5. American Cancer Society. Coping with cancer in everyday life. http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/ copingwithcancerineverydaylife/coping-with-cancer-in-everyday-life-toc. Accessed August 28, 2015. 6. National Institutes of Health. Coping with cancer. http://www.cancer.gov/about-cancer/ coping. Published December 2014. Accessed August 28, 2015. 7. Leukemia & Lymphoma Society. Watch and wait. http://www.lls.org/leukemia/chronic-lymphocytic-leukemia/treatment/ watch-and-wait. Accessed August 28, 2015. 8. National Cancer Institute. What you need to know about leukemia. NIH Publication No. 13-3775. http://www.cancer.gov/publications/ patient-education/leukemia.pdf. Revised September 2013. Accessed August 28, 2015. 9. Brown JR. The treatment of relapsed refractory chronic lymphocytic leukemia. Hematology Am Soc Hematol Educ Program. 2011;2011:110-118. 10. Leukemia & Lymphoma Society. Things to tell your doctor before treatment. http://www.lls.org/managing-your-cancer/ communicating-your-specialist/things-tell-your-doctor-treatment. Accessed August 28, 2015.
You have many people on your side From doctors, nurses, and pharmacists to friends, family, and support groups, you have many people available to help. Don’t be afraid to speak up and turn to them for support on your journey. Information and inspiration right at your fingertips. The online resources listed here are a good start for finding information about advances in treatment options for CLL, support groups, resources, and events in your area. For more information on CLL Living with Leukemia www.living-with-cll.com American Cancer Society www.cancer.org Leukemia & Lymphoma Society www.lls.org Lymphoma Research Foundation www.lymphoma.org For cancer support communities The Advocacy Connector www.advocacyconnector.com CancerCare www.cancercare.org Cancer Support Community wwww.cancersupportcommunity.com National Comprehensive Cancer Network (NCCN) www.nccn.org/patients Patient Advocate Foundation www.patientadvocate.org
Talk to your healthcare professional about which treatment options may be right for you or visit www.living-with-cll.com
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