Chronic myelogenous leukemia patient survey shows that side effects are a serious issue

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Startling findings from a new CML (chronic myelogenous leukemia) patient survey were presented at a satellite meeting of the American Society of Hematology annual meeting, in San Francisco.

The first-ever international CML patient web survey shows that the biggest challenge is coping with treatment side effects on a daily basis. An overwhelming 85% of respondents experience side effects. The Chronic Myelogenous Leukemia Society of Canada, a not-for-profit patient education and support organization, conducted the survey which was completed by 276 CML patients. At the time the survey was conducted, three quarters of the patients who responded were taking first line treatment, while one quarter were following other therapies.

The survey shows that even with the advances in treatment in the last decade, medications still hinder patient quality of life because of the persistent side effects, such as nausea, fatigue, headaches and vomiting. From a patient’s perspective, not only does the prevalence of side effects weigh heavy on their minds when they refill their prescription on a monthly basis, but the constant reminder of the disease and its limitations, makes it almost impossible to escape its reality. In fact, 43% of the respondents admitted to experiencing more frequent depressed or blue periods, while 1 in 5 patients are currently treated for depression.

“When I was first diagnosed ten years ago, my doctor started me on a treatment, but the side effects were so intense and debilitating that I could not perform the most basic tasks,” says CML patient Christine Sao Miguel. “Of course, I wanted to stay alive but wondered how long I could suffer through the treatment I needed to do so. Thankfully, my doctor and I discussed options and I am now being treated on second line therapy and a number of the debilitating side effects I suffered are no longer there.”

“Tyrosine kinase inhibitors, such as Sprycel and Gleevec, are drugs that represent an innovative breakthrough and have no doubt significantly extended patient lives. However, chronic myelogenous leukemia is still proving to be a formidable disease on many fronts and we conducted the survey to gain insight into the reality of a CML patient’s life,” explains Cheryl-Anne Simoneau, President and CEO of the CML Society of Canada, who was diagnosed with the cancer eight years ago. “What the survey has shown us is that side effects are a problem for all patients and that patients and physicians need to communicate to discuss the best option available to tackle the disease because for now, these treatments are all that we have to battle this disease. Patients are crying out for more information and the CML Society provides a good source of information. Armed with the results of the survey and working together with physicians, we can provide important input that can be used to help improve quality of life for CML patients.”

Survey results

The results of the web survey indicate that side effects have an impact on work life for 67% of patients, on social life for 77% of patients and on family life for 72% of them. Furthermore, for 74% of patients, the cost of treatment can represent a serious burden financially, and in these difficult economic times this is becoming a critical issue.

As many as 61% of respondents said that there was an information gap on how to manage the financial stress caused by CML and its treatments, and according to patients, the information should be provided by a healthcare professional (78%) or a patient organization (53%). While financial stress and side effects affect their quality of life, another major concern for CML patients is intolerance to treatments and/or the ability of the disease to become resistant to first-line therapy.

“According to the latest clinical studies, after five years about one third of patients do not achieve an optimal response to the current first-line therapy because of resistance or intolerance,” explains Dr. Pierre Laneuville, Associate Professor in the Department of Medicine and Oncology at McGill University. “As prescribing physicians, it is important to have several medications at our disposal to properly treat our patients. But is it also critical to closely follow patients to monitor their response to these treatments, their side effects and progress.”


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