Finding follow-up care and emotional support.
People can live with chronic lymphocytic leukemia (CLL) for years without treatment, but most patients will eventually require a therapy plan. It’s important to go to follow-up appointments before, during and after treatment and talk with a doctor about any changes or problems. The care team will explain the overall treatment plan and how often physical exams, blood tests, and cancer screenings are needed. At each follow-up visit:
- Keep a record of what was discussed, including lab report details.
- Ask your doctor if and why tests are needed.
- Ask about a developing a survivorship care plan. The might include a summary of the diagnosis details and cancer treatment and key tests perfomed, as well as a suggested schedule of follow-up tests and exams, a list of possible side effects from treatment and symptoms that necessitate a call to the doctor, diet and physical activity suggestions, and reminders to keep appointments with primary care providers who monitor general health.
It is normal to feel depressed, anxious or worried when you are dealing with cancer. Seek out support from friends, family, a religious community, patient groups and counselors. Below are examples of support programs available to people who have been diagnosed with cancer.
Refractory or Relapsed CLL
- The American Cancer Society’s patient navigator program connects patients with a trained navigator from a cancer treatment center. One-on-one conversations help patients deal with the physical, emotional and financial challenges that come with a cancer diagnosis. To learn more, call 800-227-2345.
- The National Cancer Information Center provides 24/7 information and support to those facing cancer. Via phone calls or live chats, trained cancer information specialists provide information and connect patients with valuable services and resources in their communities. Call 800-227-2345.
- Some treatment centers have survivorship or follow-up cancer care clinics that help monitor and support cancer survivors.
Some patients still have leukemia cells in their bone marrow after treatment, and this is called refractory leukemia. These patients may remain stable or worsen within six months after the last treatment, but the cancer often goes into remission after more treatment.
Other patients may respond to therapy initially, but then stop responding after six months. This is called a relapse. In this case, there is a return of CLL cells in the marrow and a decrease in normal blood cells after remission. With further treatment, these patients usually have years of remission.
Some of the treatments for patients with refractory or relapsed CLL include: Imbruvica (ibrutinib), Zydelig (idelalisib) and Arzerra (ofatumumab).