Joining a CLL support group can help you feel less alone and get advice on managing the condition. The CLL Society and the Leukemia & Lymphoma Society are two organizations that offer support groups for people with CLL.
Chronic lymphocytic leukemia (CLL) tends to progress very slowly, and many treatments are available to help manage the condition.
If you live with CLL, qualified health professionals can help you understand and weigh your treatment options. Other sources of support are also available to help you cope with the effects this condition may have on your life.
Read on to learn more about some of the resources that are available for people with CLL.
If you’re finding it difficult to manage the emotional or social effects of living with cancer, let your treatment team know. They may refer you to a mental health specialist or other sources of support.
You can also speak with a professional counselor through Cancer Care’s Hopeline. Their counselors can offer emotional support and help you find practical resources for managing your condition. To connect with this service, call 800-813-4673 or email email@example.com.
Some people also find it helpful to connect with other people who live with CLL.
A good place to start is the CLL Society. They currently offer about 40 CLL-specific support groups across the United States and Canada. Almost 3,000 CLL patients and caregivers meet virtually in these groups to share support, learn about CLL, and get the latest on CLL research and treatments.
Through the CLL Society, you can also register to attend patient education forums and other virtual events.
You can also find support through the Leukemia & Lymphoma Society (LLS). They offer a weekly live chat, “Living with Chronic Lymphocytic Leukemia,” which covers a variety of CLL-specific topics like making treatment decisions, managing side effects, and dealing with uncertainty.
The LLS also offers a peer-to-peer support program that connects you with someone who has gone through a similar experience as you and can offer support and advice. The peer volunteers are trained in counseling skills and are matched with patients based on factors like diagnosis, age, and gender.
You can also search for a family support group in your area through the LLS. They currently offer 130 support groups, and the number of groups continues to grow.
Other ways to find people who are affected by CLL include:
- Ask your treatment team or community cancer center if they know about any support groups in your area.
- Search the American Cancer Society (ACS)
databasefor support groups.
- Sign up for an online support group through Cancer Care.
If you’re finding it difficult to manage the costs of CLL treatment, it may help to:
- Let your treatment team know that cost is a concern. They may be able to adjust your prescribed treatment plan or refer you to financial support resources.
- Contact your health insurance provider to learn which healthcare professionals, facilities, treatments, and tests your plan covers. You may be able to save money by changing your insurance provider, insurance plan, or treatment plan.
- Ask your community cancer center if they offer any financial support programs. They may be able to refer you to a financial counselor, patient assistance programs, or other resources to help manage the costs of care.
- Check the manufacturer’s website for any medications you take to learn if they offer any patient discounts or rebate programs.
The following organizations also offer tips and resources for managing the costs of cancer care:
If you have CLL, it’s best to see a leukemia specialist who has experience treating this condition. They can help you learn about the latest treatment options and develop a treatment plan.
Your primary care doctor or community cancer center may be able to refer you to a leukemia specialist in your region. You can also search for specialists near you using the online database the American Society of Hematology maintains.
Learning more about CLL may help you understand your condition and treatment options, which can help you gain a sense of control and confidence.
You can find a lot of information about this condition online, but some online sources are more credible than others.
For reliable information, consider exploring the online resources the following organizations developed:
LLS information specialists are also available to help address questions about this disease. You can connect with an information specialist by using the online chat service, filling out an online email form, or calling 800-955-4572.
Managing a CLL diagnosis can be challenging, but many resources are available to help you cope with the physical, emotional, and financial challenges that it may bring.
Your treatment team or community cancer center can also help you find support resources online or in your community. Let your treatment team know if you have any questions or concerns about your condition or treatment needs.