Being open and honest with the people around you means you’re more likely to…
CML is a long-term condition that can cause various symptoms.1 And your TKI, like any medicine, can cause some side effects – such as fatigue – which can be similar to symptoms of CML.2 So it can be hard to know whether the way you feel is down to side effects or symptoms or to something completely unrelated. You should speak to your doctor about any change in the way you feel. They can check whether symptoms are down to CML itself, to side effects of your medicine, or to other factors – such as stress or poor sleep. They may be able to suggest ways to help you feel better.
Or there are a number of CML forums where you can connect with other people taking TKIs. While everyone’s situation, experience and feelings are different, the others in the forum will understand a lot of what you’re going through.3 The CML Support online forum has lots of very active members who can help you feel better about your diagnosis.
Remember – it’s important you keep taking your TKI as prescribed, even if you feel well and your test results show a good response to treatment.2 Your TKI treatment is keeping the CML cells in your body under control.1 If you’re concerned about side effects or have questions about taking your medicine, speak with your doctor – together you can come up with a plan.4 Having a deeper understanding of your treatment can help you feel more confident about taking it.5
Having a long-term condition such as CML can bring up difficult emotions such as anxiety, low mood and anger.6 And research shows low mood can make it more difficult to take your medicine as directed.7 You may find other people with CML have experienced similar feelings to you. If you’re feeling anxious or low, it’s also worth telling your healthcare team. They may refer you to a counsellor for one-on-one support. If you feel more positive, you’ll get more out of everyday life. Plus, you’re more likely to be able to manage your treatment well.7
A lot of people find it difficult to open up to their doctor. You may not feel you can ask many questions when they’re busy. You might feel concerned your doctor will think you’re criticising them if you ask about side effects or will be annoyed if you tell them you’ve missed some doses.8 Try to remember that…
Below are some tips for bringing up common issues, which will probably prompt your doctor to ask you more questions.
Find out more about tapping into your support network.
Cancer.net. Finding Support and Information. Accessed May 2018.
Cancer.net. Fear of Treatment-Related Side Effects. Accessed May 2018.
Cancer.net. Leukemia - Chronic Myeloid - CML. Accessed May 2018.
Cancer.net. Taking Charge of Your Care. Accessed May 2018.