A common early symptom of CML is fatigue – that debilitating feeling of no energy that saps your motivation (Savage and colleagues. Br J Haematol 1997;96:111-116). The main reason is the blood abnormalities that occur with CML, and that tired, dragged out feeling may improve somewhat once you start treatment with a TKI and your blood counts normalize.
Unfortunately, fatigue can also be a side effect of treatment (Hochhaus and colleagues. Leukemia 2008;22:1200-1206). While TKI-related fatigue is usually mild, a recent one-year survey at a CML centre found that persistent fatigue was most common symptom that people reported (Williams and colleagues. Blood 2013;122:641-647).
When trying to get help, perhaps the greatest challenge is that fatigue is “invisible”. It’s real, you feel it, but it’s difficult to communicate how severe it is and how much it drags you down – so the problem may not get the full attention it deserves.
This disconnect was seen in a recent study that compared how people with CML view their health status, and how their doctors see things (Efficace and colleagues. Haematologica 2014;99:788-793). As a general rule, people reported that their symptoms were worse than their doctors thought. People and practitioners saw eye-to-eye on some symptoms, such as nausea. But the symptom that was most frequently underestimated by physicians – in 51% of cases – was fatigue. So people need to put in a little extra effort to make sure that their doctors truly understand the severity of the fatigue and the problems it causes in daily life.
Fatigue is a common symptom of depression, and it can be very difficult to tell the difference between CML-related fatigue and depression-related fatigue. It’s also hard to figure out if depressed symptoms are a normal reaction to being diagnosed with CML, or if something else is going on.
But it should be said that the causes of fatigue and depression are less important than their effects on day-to-day living. A modest amount of exercise can provide an energy boost and improve mood (Carlson and colleagues. Bone Marrow Transplant 2006;37:945-954). The key word here is modest. The goal is not to enter a marathon. It’s better to get a bit of exercise – 10-20 minutes – every day with a regimen you can maintain than to hit the gym for four hours on Monday and then quit the program. Try to eat well. Take a nap if you’re feeling worn out. Plan out your day to avoid unnecessary stress. And share your worries and concerns with family and friends.
If fatigue and depression persist or are troublesome, tell your doctor and CML nurse. You may need to change treatments if you’re taking interferon-alpha because this drug (unlike TKIs) can be associated with depression (Van Gool and colleagues. Pharm World Sci 2003;25:11-20). Your CML team can provide useful tips for managing your symptoms. You and your doctor can also discuss if medications to target fatigue or depression would be helpful.
Living with CML is a challenge. Fatigue and depression add to that burden and make it hard to stay motivated. So it’s important to get the help you need from family members, friends, and healthcare professionals. They can ease some of the burden and help you stay focused on the important tasks of treating your CML, enjoying each day, and staying well.