A diagnosis of CML is a lot to come to terms with at any age, but here we’re focusing on what it’s like if you’re a young adult - in your teens, twenties or thirties. You may still be deciding on what sort of career you want to have, or whether to continue with further education. You may have never considered whether you want children or not.
Knowing that you have CML may mean that you find yourself thinking about your future more than other people your age. CML is often a long-term condition that you live with and most people with CML can lead normal lives.1,2 You can learn ways to plan ahead to help you get on with your life, fulfill your potential and put CML in the background.
Start by building your support network
It might seem difficult to open up to people about CML at first, but the more they know and understand about what you’re going through, the more they can support you.
It’s up to you who you want to tell – whether it’s close friends, family members, colleagues or fellow students, for example. Once you’ve explained it to people you trust, you may find that you feel relieved and more able to focus on everyday life.
If you’re in work, or at college or university, you may want to speak to your manager or tutor so that they understand your diagnosis. You could reassure them that because of your treatment, you are likely to have ‘normal’ energy levels most days. However, you could also tell them that you may have days when you feel tired, and that you may need to attend doctor’s appointments from time to time. You can request a letter from your doctor so that you can provide an official record of your diagnosis for your place of work or education.
There’s more advice on getting support from the people around you here.
You can read more about making working life easier here.
Coping with tiredness
One of the symptoms of CML is tiredness (fatigue).3,4 So you are likely to have times when you feel tired, and it may be difficult to get on and have a ‘normal’ day. This can impact all areas of your life, from work and study to exercise and socialising.
You need to go easy on yourself, and also ensure that those around you learn to expect and accept days when you don’t have as much energy as other people your age may have. Close friends and family are likely to want to support you, but may not know how. It’s best to ask them for specific ways to help, like doing some shopping, clothes washing, cooking a meal, or some cleaning.
The best way to maximise your energy levels is to be as active as possible on your ‘good’ days, get as much sleep as you can, and have a healthy diet. It can also help to fit in some light exercise, such as getting out for a short walk, even when you feel tired. You can also plan in advance for days when you may be lacking energy, for example by stocking up on food that will keep in the cupboard or freezer so that you can make yourself quick and healthy meals and snacks when you’re too tired to cook.
Read more about looking after yourself here.
What if I want to have children?
You may not yet have decided whether or not you want to have children. A diagnosis of CML can mean that you need to plan ahead, so that if you may want to have a family at some point in the future you have already discussed options with your healthcare team. They will help you make the best decisions for you.
For young women diagnosed with CML, there is the possibility of freezing eggs or embryos, with a view to starting a family in the future, if the time is not right yet.2 For those who are ready to start a family now, current advice is to agree with their healthcare team to stop their CML treatment before trying to conceive.2
Women are also advised to stay off treatment for the duration of their pregnancy, because TKIs may increase the risk of miscarriage and harm to the foetus.2 This would be done under very close monitoring and management by the healthcare team. They would decide on a course of action in partnership with each individual, tailored to their specific circumstances.2
Advice about whether to continue or pause treatment for young men who wish to start a family will depend on which treatment they are taking. This should always be discussed with the healthcare team. Those who are not ready to start thinking about starting a family may also want to discuss options for semen cryopreservation (sperm banking) with their healthcare team, because it is not possible to predict which treatments they may need in the future, and how these may affect their potential to become a father.2
You can read more about fertility and pregnancy in people diagnosed with CML here.
It’s hard to remember everything
With the right treatment, most people with CML can lead normal lives,1 so it’s vital to work closely with your healthcare team to make sure that you get the most out of your treatment. If you experience any problems with your treatment, they are there to support you. They can help you find solutions that fit in with your life.
As a young adult, with so much going on in your life already, it makes sense to set up reminders so that you don’t forget to take your treatment. You can get pillboxes to fill with the tablets you need to take for the week ahead, so that you always know whether you’ve taken your dose that day, as the days of the week are clearly shown on each pill compartment. You might also want to download an app to your phone that will ping you a notification or set yourself a regular reminder.
Finally, remember that it’s your life, and your decisions. You make the choices around your care and treatment, in partnership with your healthcare team. If you have any questions, or you need more information or support, just ask. There are also some helpful links here that can help you to find the right support.
Negrin RS & Schiffer CA. Patient education: Chronic myeloid leukemia (CML) in adults (Beyond the Basics). UpToDate 2018. Accessed October 2018.
Palani R., Milojkovic D., Apperley J.F. (2016) Managing Pregnancy in Chronic Myeloid Leukemia. In: Hehlmann R. (eds) Chronic Myeloid Leukemia. Hematologic Malignancies. Springer, Cham.
CML: a guide for patients - Information based on ESMO Clinical Practice Guidelines - v.2013.1.
Macmillan. Targeted therapies. Accessed May 2018.