Dr. Isabelle Bence-Bruckler has been treating CML for almost 20 years. In that time, she has watched the amazing trajectory of CML research that changed a fatal disease into one that people could live with. Bence-Bruckler, hematologist at the Ottawa Hospital and associate professor of medicine at the University of Ottawa, shares her thoughts on treatment-free remission, managing side effects and the importance of emotional wellness.
Q: How long have you been treating CML?
I.B-B: Since 1996
Q: What are some of the changes that you have seen in CML treatment?
I.B-B: TKI therapy. We ran the IRIS trial at our site in Ottawa. When I started practising, we considered CML a fatal disease with a median survival of four years. We transplanted patients if possible. Today it is very rare to transplant a patient with CML.
Q: The possibility of stopping medication and remaining in remission is a hot topic in the CML community these days. Are you having this conversation with your patients? What is the general feeling about stopping their medication?
I.B-B: Yes, our centre is participating in the TRAD (Treatment-free Remission Accomplished with Dasatinib) study. This is not something that should be done outside of a clinical trial yet. Most patients have been interested in participating in this study and don’t mind the monthly PCR testing in the first year. However, some are fearful of a relapse and prefer to remain on their medication until we learn more about how and when to stop therapy.
Q: Although CML is generally well-managed with medication, and many patients experience minimal side effects, there are some who struggle with significant life-affecting side effects such as fatigue, GI issues and bone pain. What advice can you share for dealing with these?
I.B-B: Tell your health care team. There are ways to manage these side effects. Switching drugs is also an option now that we have choices. Educate yourself and speak to other CML patients. You may need to learn how to adapt your lifestyle to accommodate certain side effects. There is a lot that one can do. More than just taking other medication, you can adjust your diet, your habits, perhaps incorporate exercise or some form of relaxation into your routine. We are all different, and may need to explore several ways to deal with certain side effects. Small changes may add up to making your day better.
Q: In your opinion, how big of a role does emotional health play in feeling well physically? It is a great irony of having CML – we are so grateful to be alive, but so anxious about things going badly that it can be hard to move forward. What do you suggest for patients who feel this way?
I.B-B: Meeting with the health care team more frequently at the onset I believe is helpful. Educating yourself and meeting other CML patients who have lived with the diagnosis for many years often proves to be a source of strength, because they understand what you are going through, yet can give you some comfort that things tend to go well most of the time. And I think time helps, because seeing that you are doing well year after year is proof. Finally, if this has truly set off an anxiety disorder or a depression it is important to seek counselling and appropriate help.
Q: What are your thoughts on the vascular side effects that are being seen with some treatments?
I.B-B: We need to take this seriously, select drugs wisely and have these discussions with our patients.
Q: Predict what CML care will look like in five years.
I.B-B: I think we will have state of the art monitoring across Canada and a goal of treatment-free remissions for our patients. We may also be moving towards combination therapies at the onset (theses trials are ongoing and planned) aimed at deep remissions allowing for drug discontinuation.
Q: If you had one piece of advice to offer people living with CML, what would it be?
I.B-B: Learn about your disease and be a central part of your care. By being in control, you will have the best chance of coping and living as normal a life as possible. Speak to your health care team about your side effects and of any fears that you may have.