Treatment-related side effects – especially fatigue – can be a challenge for people taking a TKI (tyrosine kinase inhibitor) for their CML.
But a majority are able to keep taking their medication to control the disease process, according to a survey CML-IQ ran last summer/fall to ask readers about their quality of life.
A total of 135 people from 13 countries completed the survey. Most respondents were from the U.S. (42%), Canada (26%), Australia (10%) and the U.K. (6%), but we also received replies from throughout Europe, India and Nepal. CML is an illness that affects people worldwide.
The most common TKIs taken by respondents were Gleevec (59%), Sprycel (37%) and Tasigna (25%). About 10% were taking Bosulif, and 1% were taking Iclusig (which is generally reserved for people with treatment-resistant CML).
The side effect that had the greatest impact on people’s quality of life was fatigue, reported by 37% of respondents. Fatigue was most common among people taking Tasigna (60%), followed by Gleevec and Sprycel (both 32%) and Bosulif (22%).
Other side effects that affected quality of life were muscle cramps (14%), swelling (13%), and insomnia (13%). Less common problems were diarrhea (6%), nausea (5%), and anxiety/depression (5%). Two percent said that no side effect affected their quality of life.
Muscle cramps were most common with Gleevec, Tasigna (both 20%) and Bosulif (11%). Swelling was most often reported for people taking Bosulif (44%), Sprycel (16%) and Gleevec (10%), but was not reported with Tasigna. Insomnia was most common with Bosulif (22%) and Sprycel (19%), and less common with Gleevec (12%) and Tasigna (4%). Twelve percent had diarrhea with Gleevec but this problem was generally not reported with the other medications. Anxiety or depression was most frequent with Sprycel (11%), but uncommon with other therapies.
To summarize by drug, the side effects that had the biggest impact on quality of life were fatigue with Gleevec, Sprycel and Tasigna (as well as for the one person on Iclusig), and swelling with Bosulif.
Taking your medication as prescribed by your doctor is critical to controlling CML, and fortunately these side effects did not stop most people from taking their treatment. Overall, 63% of people said they never/rarely missed taking a dose. Another 15% said they missed a dose only if they happened to forget, and 13% said they only missed taking a dose from time to time. Three percent said they skipped a dose from time to time, and 3% said they would skip a dose if they had an important event coming up (such as a wedding or vacation). Only 2% said they missed a dose on a few occasions each month. (To read more on this topic, see Why should you take your meds? CML-IQ, February 12, 2015.)
People who said they never/rarely miss a dose were most commonly taking Tasigna (71%), followed by Gleevec and Sprycel (both 63%) and Bosulif (56%). People who said they forgot a dose were most commonly on Gleevec (18%). People who said they took a break or skipped doses were most often taking Sprycel (9%).
Treatment-related side effects did not appear to make people dissatisfied with their treatment. Overall, 68% of respondents said that side effects hadn’t required a change in therapies. However, 17% had changed treatments because of side effects, and 15% would like to switch medications. People who had not changed therapies because of side effects were most commonly taking Gleevec (76%) or Tasigna (67%). People who had switched because of side effects were most commonly taking Bosulif (33%), which is likely a reflection of how Bosulif is used. This medication is generally reserved for people who can’t tolerate another TKI, or have developed resistance while on another medication.
Thank you to everyone who took the time to respond to the Have Your Say survey. Watch for more surveys in future issues of CML-IQ.