In his book, Risk: The Science and Politics of Fear, Dan Gardner discusses the science behind worry. He says that we process information and judge risk in two ways. One is with the conscious mind, which understands statistics and is able to reason. The second is the unconscious mind. According to Gardner, this mind makes judgments quickly, and knows nothing of numbers and logic. You might call this ‘gut feeling’ – when we believe that something is true even if we cannot quite say why.
Over the last year, I have been reminded of Gardner’s theory many times, as treatment-free remission (TFR) trials roll out across the country. Studies are showing a roughly 50/50 success rate among patients who meet certain criteria – and by “success,” I mean that roughly 50% are able to stop their medication without relapsing, while the other 50% relapse, but regain their original response, or close to it, once they restart medication. Yet, despite what looks like you-can’t-lose odds, TFR trials at many of the major centres are struggling to meet enrolment targets. And it has doctors wondering why.
“Every day, someone complains to me about side effects, or they are worried about the long-term effects of medication,” said one hematologist, shaking her head. “The trials offer a possibility to be free of all of this – yet no one wants to give it a try.”
But not taking the medication that is keeping an otherwise deadly leukemia at bay sounds ludicrous. As one young patient put it, “Stopping medication feels like a bit of a life-and-death decision.”
But it’s not, said another clinician, calling it simply, a “life-and-life decision”: one with medication or one without. And to look at the studies that are being done around the world, it seems that this is true. In fact, the roughly 50/50 results are quickly making TFR one of the hottest stories in blood cancer since Gleevec.
Still, mention stopping medication to a group of people living with CML and their families, and you get a variety of reactions. First there is excitement and interest (imagine not having those horrible side effects!); then curiosity (what is the worst that could happen?); then fear (no, it’s too risky) and then doubt (but who knows what the long-term effects of these drugs are? Maybe it would be better to stop). While this may seem like a rational thought process, it’s actually not a thought process at all, but rather a paralyzing cycle of emotions based on fear, worry and a perceived sense of risk that makes it virtually impossible to make a decision about anything.
From hearing this conversation play out time and time again at our patient meetings and in email conversations with patients around the world, it is clear that despite the favourable results of TFR studies, as well as doctors’ endorsements, many people are deciding against TFR based on gut feelings, as opposed to data.
For the record, I totally get it. Last year, my doctor told me that I was eligible to join a TFR trial. I experienced the same cycle of emotions described above, and, in the end, I decided to wait. That’s not to say that I don’t find the option of stopping my CML drug tempting and exciting. In fact, I am envious of those who have taken the leap. I received an email last week from someone who joined a TFR trial six months ago. “The amount of energy I feel is incredible,” she wrote.
Yes, I know. But I haven’t signed up for the trial. Some of my TFR inertia has to do with my gut, or my “unconscious mind,” as Gardner puts it. After all, I have seen enough numbers and talked to enough CML specialists to know that much of the risk of TFR has nothing to do with the actual stopping of medication, but in the frequency with which you are monitored – which should be monthly. But as I have heard patients say, “Well, you never know.”
But we do know, according to Dr. Jeff Lipton, who participated in a TFR panel discussion at our recent Living Well with CML conference. Dr. Lipton brought a fresh perspective, stepping away from all the emotion. He talked about science instead; calling attention to logic, numbers and proven data. He was joined by other panellists: Claire Edmonds, a registered psychotherapist and a breast cancer survivor; Phil Meffe, a CML patient who chose to stop treatment; and Todd Winsor, who decided to stay on medication.
The discussion was fascinating, but not surprising. We learned that a person’s perception of risk weighs heavily on the decision to stop treatment. Some patients and their families decided against TFR, even before they knew anything about the trials. They had never read a study and had not had a discussion with their doctor. Interestingly, these same patients expressed sort of a sad longing as they discussed the side effects that meant a lower quality of life and concern about the long-term effects of medication. They recognized the frustrating truth at the crux of making a decision on whether or not to stop treatment: the implications of stopping their drug may feel fearfully uncertain, but so is the unknown impact of taking these TKIs for life.
Some people also felt a lack of access to current, easy-to-understand TFR studies, which hindered their ability to make an educated decision. Others, having been lectured repeatedly on the importance of taking their medication, found it hard even to consider stopping. There was also a lot of discussion about the guilt that people felt about stopping the drug that saved their lives. A father told me that his kids would be really angry if he were “silly enough” to “risk his life” after having the good fortune of a life-saving medication. One of the patient panellists said that a comment from his mother about “taking a chance that he’d have to go through everything again, like when he was diagnosed” was enough to change his mind about joining a trial.
But even in the face of all the fear and doubt, there was a lot of excitement and positivity about TFR and what it could mean for the future of CML treatment. There were many who were looking forward to joining a trial once they met the criteria, and family members who believed that stopping treatment was an incredible opportunity – not only to benefit their health, but also to give back to the research that originally saved their lives.
The conversation lasted almost two hours, and although the panel discussion may not have changed anyone’s mind about TFR, it did help us all to understand better why the decision to stop medication can be so heart-wrenching. But despite what they say about following your gut, in this case, the only useful way to make a decision is with logic, hard data and the counsel of your doctor.