Thanks to modern treatments like tyrosine kinase inhibitors (TKIs), CML is very often a long-term condition you live with.1 Studies show that people who have more knowledge and confidence about their treatment decisions have better experiences with their treatment and an improved quality of life than those who feel less informed or confident.2
In this article, we take a look at two new research papers, and explain how their findings might be relevant to you.
Christel Boons and her team in the Netherlands (2018), interviewed 61 men and women diagnosed with CML who had been prescribed TKIs. The researchers were interested in finding out how they managed their treatment day to day; referred to as ‘treatment adherence’.3
1 in every 4 (25%) of the people interviewed had experienced some difficulties taking their TKI as prescribed, resulting in missing doses.3 Those interviewed mentioned both unintentional and intentional reasons for missing their TKI medication. The most frequent reason for people unintentionally missing a dose was forgetfulness; for instance, due to being busy with social activities which disrupted their routine. Other unintentional reasons included not having a drink to swallow their TKI (for instance when driving) or falling asleep before taking it. Sometimes people intentionally skipped a dose to avoid side effects or because they had an event coming up, like a children’s party or family dinner.3
A missed dose was more common in people who had been prescribed a second TKI after they had tried another treatment (also called a second-line treatment) and also in people who had lived with CML for a long time.3
More than half of the people in this study hadn’t mentioned missing doses to their healthcare team,3 possibly because they were concerned about what their doctor would say. Some may have felt it’s acceptable to miss a dose occasionally, because their doctor hadn’t given them information on the consequences it could have on their TKI response.
The study found that people living with CML wanted more support and information from their doctors about all aspects of CML treatment, in particular about managing side effects.3 In addition, it was concluded that those prescribed TKIs should take responsibility to proactively manage their treatment with their doctors.3
It is important to remember that you are much more likely to have a good response to treatment if you follow the treatment recommendations that you agreed with your doctor.3
Someone in your healthcare team, a doctor, nurse or pharmacist, will be able to support you and provide any information you might need about your treatment. You should communicate closely with them about how you are managing with taking your TKI, as well as how you are getting on in terms of side effects.3
If you sometimes have trouble taking your medicine as prescribed, try saying... “I’m not always managing to take my medicine the way you advised me to. Can we talk about it?”
If you don’t know who to speak to for the information you are after, ask anyone in your healthcare team to direct you and help you find the best person.
Staying informed can help you play an active role in managing CML. Try to have an open and honest conversation with your healthcare team, especially if you have any questions about your treatment.
For tips on talking to your healthcare team, see the article 3 reasons to open up.
If you are prescribed a TKI, you might expect to take it over the course of many years.1 Because of this, it is likely you may also take other treatments during this time (for example, statins if you have high cholesterol, or insulin if you have diabetes). The more medications you take, the more careful you and your healthcare team need to be about drug-to-drug interactions.4
Drug-to-drug interactions happen when two or more drugs react with one another. This may cause unexpected side effects, or it may alter the drugs’ effectiveness.
A Spanish research team led by Dr Santiago Osorio (2018) looked into how interactions with other drugs might affect the TKIs of people living with CML.4 They also looked into what side effects people experienced. They found that over half of the people living with
CML in their study experienced a potential drug-to-drug interaction, although the effects were mild. However, it was difficult to tell if any side effects were down to the individual drugs or the interactions with TKIs.4
Your healthcare team, usually the doctor prescribing your treatment and the pharmacist he or she works with, will take into account medications you are already taking when you are prescribed a TKI. However, if anything changes or you are prescribed other medications, you should speak to your healthcare team so that they can advise on any potential drug-to-drug interactions. It may be useful to keep a list of all the medications you are prescribed as a reminder for you and your doctor.
Jabbour E, Kantarjian H, Eliasson L, Cornelison M, Marin D. (2012) Patient adherence to tyrosine kinase inhibitor therapy in chronic myeloid leukemia. Am. J. Hematol, Jul;87(7):687-691.
Hibbard JH, Greene J. (2013) What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Milwood), 32(2):207-214.
Boons CCLM, Harbers L, Timmers L, de Jong J, Swart EL, Hendrikse NH et al. (2018) Needs for information and reasons for (non)adherence in chronic myeloid leukaemia: Be aware of social activities disturbing daily routines. Eur J Haematol, 101(5):643-653.
Osorio S, Escudero-Vilaplana V, Gómez-Centurión I, Pérez-López R, Ayala R, Vall-Llovera F et al. (2018) Ann Haem, 97:2089-2098.