Managing Chronic Lymphocytic Leukemia
Ongoing medical care after treatment is very important. Regular visits with your doctor are needed for many years following treatment to verify that the treatment was effective, check for any side effects from treatment, and monitor changes in your health.
A routine follow-up visit will include a physical exam and discussing with your doctor your current health and presence of any symptoms. Blood samples will be collected, and bone marrow aspirations or medical imaging will be performed as necessary depending upon your medical history and the results of your physical exam.
Of particular concern are:
• Development of CLL/SLL symptoms. Conventional therapy for chronic lymphocytic leukemia/small lymphocytic lymphoma is not curative, and all patients who achieve a complete remission are expected to eventually relapse. New symptoms should be reported to your doctor right away so that a recurrence of CLL/SLL or side effects can be treated.
• Risk of infections. CLL/SLL is frequently complicated by infections resulting from the damage to the immune system caused by the disease and/or its treatment. Some infections can be prevented with therapy, which is usually given during and after treatments that are especially damaging to the immune system. Patients with CLL/SLL should stay current on their vaccines for pneumococcal pneumonia and influenza.
• Development of altered immune system symptoms. CLL/SLL can alter the immune system and cause it to attack healthy red blood cells and platelets. This can cause a decrease in the red blood cell count, which is associated with symptoms of fatigue and shortness of breath or a decrease in the platelet count, which can lead to bleeding disorders. Either condition usually can be effectively treated.
• Increased risk for secondary cancers. Patients with CLL/SLL are at increased risk of developing other cancers. Medical screening for breast, colon, cervical, and prostate cancer at regular intervals is vital. Smoking cessation is strongly recommended to minimize the risk of developing lung cancer. In addition, skin cancer is more common and often behaves much more aggressively in people with CLL/SLL. Adequate sun protection and an annual examination by a healthcare provider for skin cancer are advisable. Up to 10 percent of patients with CLL/SLL can develop more serious, aggressive lymphomas. This transformation is usually accompanied by fever, night sweats, weight loss, or rapid enlargement of a lymph node. Any of these symptoms should be reported to a healthcare provider immediately.
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A relapse or recurrence is when the leukemia goes into remission after treatment and then comes back. For many people with a relapse, the disease can go back into remission with additional treatment. In this situation, a blood and bone marrow transplant is often considered.
If the leukemia continues to recur or persist after subsequent treatments, you and your doctor will have to weigh the possible benefits of additional treatments against potential side effects. Your doctor may recommend focusing treatment on relieving the symptoms.
For people with persistent CLL/SLL, treatment therapies usually concentrate on controlling pain, fatigue, depression, nausea, and loss of appetite. Blood transfusions may be undertaken to minimize fatigue. Other medications may be prescribed to minimize symptoms such as fatigue, depression, nausea, and loss of appetite.
After treatment, most people feel relieved to have finished and excited to return to their normal routine but worry about the uncertainty of their health. It can take weeks to months before the recovery feels real and a person gains confidence in his or her health.
It can be very challenging to live with the uncertainty that accompanies most forms of cancer, but it's important to remember that you're not alone. There are resources available to help, and here are some strategies to use them:
• Take an active role in your healthcare. Find out everything you can about the type and stage of your disease, the treatment options, and their side effects. Although you may feel tired and discouraged, don't let others, including your family or your doctor, make important decisions for you. Talk with your doctor, and seek out information from reliable sources.
• Maintain a strong support system. Don't be afraid to ask for help coping with the issues, the pain, or the anxieties of CLL/SLL. Support can come in many forms: family, friends, individual counselors, cancer support groups, church or spiritual groups, or online support communities. Although support groups aren't for everyone, they can be a good source of practical information. The concern and understanding of others coping with cancer can be especially helpful. You may develop deep bonds with people who are experiencing the same things you are.
• Stay active, and set reasonable goals. Leukemia doesn't mean you need to stop doing the things you enjoy or normally participate in. Setting reasonable goals can help you maintain a sense of accomplishment and a sense of purpose. You may not be able to work or volunteer for 40 hours a week, for example, but you may be able to work or volunteer part time. Many people find professional or volunteer work integral to their sense of well-being and a positive mental attitude.
• Make healthful choices. Eating well, exercising regularly, relaxing, and getting enough rest are fundamental for your physical and emotional well-being. Plan ahead for the downtimes when you may need to rest more or limit your activities to combat the stress and fatigue of CLL/SLL. One of the best things you can do for your body is to develop healthful eating and exercise habits after treatment.
Hospice is a centuries-old idea of offering a place of shelter and rest to weary and sick travelers on a long journey. The word hospice was first used to mean providing specialized care for dying patients in 1967 by Dame Cicely Saunders at St. Christopher's Hospice in London.
Today, hospice is a philosophy of healthcare that provides humane and compassionate care for people in the last phases of incurable disease. Hospice affirms life and does not hasten or postpone death. The philosophy recognizes death as the final stage of life and seeks to allow patients to continue an alert, pain-free life so that their last days may be spent with dignity and personal meaning, surrounded by their loved ones.
The patient, patient's family, and doctor decide together when hospice services should begin. Usually, this is when the patient's life expectancy is thought to be six months or less. Hospice care is provided 24 hours a day, seven days a week in the patient's home, a hospital, nursing home, or private hospice facility. Most hospice care in the United States occurs in the home, with a family member or members serving as the primary caregivers.
More information on chronic leukemia is available at these websites recommended by the U.S. News & World Report library.
MedLine Plus
This website, produced by the U.S. National Library of Medicine and National Institutes of Health, is a compilation of resources and articles from trustworthy medical and governmental organizations. There is an overview of the condition and descriptions of the different forms of leukemia. Readers just starting out can find an overview of symptoms, treatments, and research. There are also useful features here like a glossary of terms, links to organizations, and a list of clinical trials.
The Leukemia and Lymphoma Society
This national organization is devoted to finding a cure for blood cancers and providing support for patients and their families. Its website has a wealth of information on conditions, treatment options, and advocacy. There is a toll-free telephone service that patients can call to ask questions. Visitors to the society's website can join online support groups, subscribe to a monthly newsletter, download podcasts, or sign up for an RSS feed to get the latest news. Some financial support is also available. The site has good information for families, friends, and caregivers as well.
American Cancer Society
The national organization devoted to eliminating cancer has an overview and a detailed page about chronic lymphocytic leukemia (CLL). The site addresses risk factors and treatments and suggests a list of questions to ask the doctor. There is an online tool where users can get an analysis of their treatment options. Users can also search for clinical trials in their area and learn about how they work.
ACOR Leukemia Links (Association of Online Cancer Resources)
This page grew out of the personal websites of two leukemia patients who were active on cancer support group listservs. The site combines their resources and links to present information about topics like treatment options, bone marrow transplants, and clinical trials. Some of the references are international in scope. Users can read personal stories of cancer survivors or post their own. There are links to chat and E-mail support groups as well.
Leukemia Research Foundation
This group is based in the Chicago area, but its website has valuable information for readers anywhere. Resources here include condition overviews, a glossary of terms, and frequently asked questions for patients and friends. A list of useful websites and resources provides information on treatments, transplants, and coping. There is also a section listing financial assistance programs.
People Living With Cancer
This site, maintained by the American Society of Clinical Oncology, is a gateway to expert-approved information on all types of cancer. Resources include articles about chronic lymphatic and chronic myeloid leukemia. These entries discuss symptoms, treatments, and side effects. There are also links to current scientific research and clinical trials. The site provides good general information for people dealing with all types of cancer, touching on screenings, survivorship, and advocacy.
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