3 reasons to open up

Being open and honest with the people around you means you’re more likely to…

Get the best support

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.

Feel in control

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

Manage your mood

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 

Tips for talking to your doctor

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…

  • Your doctors and nurses are there to support you.
    You can make it easier by being open with them and telling them if you’ve noticed any changes in the way you feel.
  • If you don’t feel comfortable talking to your doctor,
    you could always try speaking to another member of your healthcare team.
  • You can write down things you want to ask your doctor
    so you don’t forget in the appointment.
  • You can take someone with you to an appointment for moral support –
    they can also help you remember things you wanted to ask about.

Below are some tips for bringing up common issues, which will probably prompt your doctor to ask you more questions.

  • If you have concerns about side effects, try saying...
    ‘I’m wondering if I’m experiencing some side effects – can I run through them?’
  • If you are having 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 understand or still feel worried about something your doctor explained previously, try saying...
    ‘I know you’ve told me about this before but I’d find it really helpful to go through it again.’

Find out more about tapping into your support network.

  1. Hochhaus et al. 2017. Annals of Oncology. 28 (Supplement 4): iv41–iv51.
  2. CML: a guide for patients - Information based on ESMO Clinical Practice Guidelines - v.2013.1.
  3. Cancer.net. Finding Support and Information. Accessed May 2018.

  4. Cancer.net. Fear of Treatment-Related Side Effects. Accessed May 2018.

  5. Geissler J. 2017. Cancer Res Clin Oncol. 143:1167–1176.
  6. Cancer.net. Leukemia - Chronic Myeloid - CML. Accessed May 2018.

  7. DiMatteo MR et al. 2000. Arch Intern Med. Jul 24;160(14):2101-7.
  8. Cancer.net. Taking Charge of Your Care. Accessed May 2018.