Most people with chronic lymphocytic leukemia (CLL) are diagnosed before this cancer reaches its advanced stages. In fact, it could take several months or even years to get there. As the disease progresses to later stages, CLL cells crowd out healthy cells in the bone marrow, which could lead to problems such as anemia, low levels of platelets, and an enlarged liver and spleen.

“Typically, a patient may feel fatigue, fever, chills, and enlarged lymph nodes,” says Wei Ding, MBBS, PhD, assistant professor of oncology at the Mayo Clinic in Rochester, Minnesota.

Larry Saltzman, MD, is a retired family physician in Sacramento, CA, who has CLL. When his cancer reached an advanced stage, he lost weight, sweated at night and felt weak. He also dealt with emotional setbacks.

“Most people need someone to talk to. I am a doctor. I thought I knew everything, but this whole process is not easy, not for me,” she states.

This is understandable, as it can be a stressful and exhausting situation, says Ding. But you don’t have to do it alone.

Treatment Options for Advanced CLL

You may still benefit from treatment. There are single medications or combination therapies that your doctor may recommend. You may need to try a few different medications or join a clinical trial to find which one works best for you, says Gwen Nichols, MD, medical director of the Leukemia & Lymphoma Society.

After several relapses, several treatment plans, and two clinical trials, Saltzman and his doctor found a combination drug therapy that kept his cancer at bay.

Tell your doctor what is happening

Your doctor should be your point of reference when you have advanced CLL. But you need to find the right one.

“I would recommend someone see a CLL specialist. That’s important,” says Ding. “And if you have questions, go to a CLL center to get a second opinion.”

A hematologist-oncologist is a doctor trained to diagnose and treat blood cancers such as CLL. More than 12,000 doctors provide this type of care each year in the United States, according to the American Society of Clinical Oncology.

Talk to your medical team about your treatment goals, your concerns, and how you feel. It’s good to be open about it when you’re not doing very well physically or emotionally. Also, talk if you want to explore a different therapy, pursue a clinical trial, or stop treatment altogether. This helps your doctor know what is best for you.

“That’s part of a doctor’s job: figuring out what our patients need,” Ding says.

Be sure to tell your doctor about any new symptoms you have. “As a partner, your doctor is counting on you to report these changes,” Nichols says. “Don’t feel like you have to wait until your next appointment to report a significant change. You can call the office and let someone on the treatment team guide you.”

Get support

You’ll probably feel better if you talk about your emotions with someone else.

Who you talk to is up to you. You may want to talk to a family member or friend. Or someone from your community, or a counselor.

There are also support groups, where you can talk to other people facing the same diagnosis. “Some prefer in-person support groups, others online groups for CLL patients or discussion forums where they can join a CLL forum,” Nichols says.

Several nonprofit organizations, such as the American Cancer Society, Cancer Care, CLL Society, and Leukemia & Lymphoma Society, provide ways for people with CLL to connect with others.

Living well with late-stage CLL

It is helpful to learn as much as you can about the disease and try to maintain a positive attitude when possible. At the same time, allow yourself to feel all your emotions. These can vary from person to person and even from day to day. You might feel anger, sadness, fear, shock, or disbelief. There may also be times when you feel deeper gratitude for your daily life and the people around it. Mindfulness practices such as meditation or yoga could help reduce stress levels. If you are part of a faith community or have other meaningful connections, those are great resources too.

Healthy lifestyle habits can also make you feel more in control. Diet and exercise can often help with some CLL symptoms and treatment side effects, such as fatigue and weight changes, and help you feel better, Nichols says.

Since his diagnosis, Saltzman has become an advocate for patients and is now the executive director of research for the Leukemia & Lymphoma Society. He’s also run six marathons (two during the latter stages of CLL) and doesn’t plan on slowing down anytime soon. Of course, not everyone with late-stage CLL can run marathons. But your chances may be greater than you think.