If you have CML, chances are good that if you aren’t on a clinical trial, you have heard of one. For Lidia Casciaro, R.N., BSc, a clinical trials nurse at Princess Margaret Cancer Centre in Toronto, educating patients about clinical trials is her job. Her top piece of advice? Take your medication.
Q: How long have you been a clinical trials nurse? 16 years.
L.C.: I spent seven years at Toronto General in the HIV clinic, and I have been at Princess Margaret for nine years.
Q: How many CML patients do you see?
L.C.: About 50 in current studies. I know most of the CML patients in the clinic that have been in former studies.
Q: What is the primary focus of your job?
L.C.: I look after patients who are on about 10 active trials, some of which have been running for several years, and some new ones involving investigational drugs that are not yet approved.
Q: How can a patient find out about what clinical trials are happening?
L.C.: I advise patients to ask their doctor to see which clinical trial they would be eligible for. Check www.theprincessmargaret.ca for information about clinical trials in general.
Q: What happens when you first meet a patient?
L.C.: When I first meet a patient, we talk about what the study involves, the study drug and the possible side effects. Once the patient consents to participate, we begin a series of study visits. It is important to establish a baseline for the study so that we can better evaluate the patient as the study progresses. This means tests like electrocardiograms and echocardiograms to monitor the study drugs’ effect on a patient’s heart, as well as bone marrow aspirates. This information is crucial to evaluating a study drug and determining its efficacy. I collect this information and provide it to the sponsor of the study.
Q: Do patients have access to information about the side effects that other patients have experienced?
L.C.: All side effects are listed in the Informed Consent form that lists the most frequent and rare occurrences. New information will be provided on an ongoing basis.
Q: Can a patient leave a study?
L.C.: Yes, they can leave the study at any time, however, it is best to discuss this decision with their study doctor, and explore whether an alternative medication would be better.
Q: It must be difficult to be on the front lines everyday, meeting patients early in their diagnosis who are struggling to understand CML and the implications it will have on their lives. How do you manage this challenge?
L.C.: I am very positive. I see many successes in the management of CML. I enjoy being a part of the process of helping them get healthy again.
Q: What is the most rewarding part of your job?
L.C.: I like being part of cutting edge CML research. Helping international trials come to PMH, and then seeing an investigational drug go from clinical trial to FDA/Health Canada approval is very gratifying. I feel happy for the study patients that were part of this process and are doing well.
Q: You have had many years experience with CML patients, and you have seen many different situations and patient experiences. What is your advice for someone who has just been diagnosed?
L.C.: I reassure them about the successes that we have seen. CML is so treatable! The medication works, and so many patients are doing really well.
Q: What can a patient do to ensure a good outcome?
L.C.: Take the medication! The best thing I can do as a nurse is to help patients take their medication the right way. Compliance is so, so important. People don’t die of CML anymore. You have treatment, use it. Some patients stop taking their medication because they have a lot of side effects. They need to tell their doctor and nurse so we can we work through it. Also, ask questions. Patients need to understand how they are doing so they can work towards the goal of getting into hematologic and molecular remission.