What your hairy cell leukemia patients want you to know.

Hairy cell leukemia is different from most other hematologic malignancies because it is so rare. Patient concerns include finding a knowledgeable physician, confirming the diagnosis at the initial presentation, coping with treatment side effects and monitoring for potential relapse of this chronic disease.

A patient's point of view.

Patients have many concerns when diagnosed with hairy cell leukemia (HCL). Their ultimate concern is whether they will be cured. Although purine nucleoside analogs have been very effective in the treatment of HCL, some patients do not respond to these therapies and many relapse after initial treatment. From a patient's point of view, it is gratifying to know that researchers continue their efforts to develop more effective treatments with minimal side effects. By forming the Hairy Cell Leukemia Consortium, these researchers seek to educate patients and doctors around the world and continue their quest for a cure for hairy cell leukemia.

Leucemia de células pilosas (tricoleucemia)

Apresenta informações aos pacientes e suas famílias a respeito da leucemia de células pilosas: seus sinais e sintomas, diagnóstico e tratamento, causas e fatores de risco, aspectos sociais e emocionais. Ao final, um glossário auxilia o leitor a compreender os termos técnicos. Documento em formato PDF, requer Acrobat Reader.

Changes in finances, insurance, employment, and lifestyle among persons diagnosed with hairy cell leukemia.

BACKGROUND: While being cured of cancer generally leads to a life expectancy similar to that of the general population, the extent to which other aspects of life are affected is unknown. To address these concerns, patients with hairy cell leukemia, a cancer with a very high cure rate, were queried about employment, insurance, finances, and lifestyle during and following their treatment. METHODS: Study participants (n = 31) ranging in age from 24 to 73 years at the time of diagnosis (median, 49 years) were surveyed regarding changes in health and life insurance, employment, out-of-pocket medical costs, exercise, diet, and use of mental and alternative health services that occurred during or following hairy cell leukemia treatment. RESULTS: Following a diagnosis of hairy cell leukemia, 61.3% of the respondents paid for some aspect of medical care in spite of having health insurance coverage at the time of diagnosis. Four respondents (12.9%) could not obtain health insurance following treatment, and the occupational choices of several individuals or their spouses were based in large part on a desire to obtain or maintain comprehensive health insurance. Of the 13 individuals who attempted to purchase life insurance, 10 had difficulty obtaining a policy or were denied coverage. Lifestyle changes were noted by 40% to 60% of respondents, and included reports of more frequent exercise, adoption of a healthier diet, and having a greater appreciation for life, loved ones, and physical health. CONCLUSIONS: While hairy cell leukemia is a highly curable malignancy, cancer survivors' lives and lifestyles are altered substantially after receiving treatment for the illness.