This campaign and discussion guide has been developed and funded by Novartis Pharmaceuticals UK Ltd. This material is for patients with Chronic Myeloid Leukaemia (CML). Information provided should not be considered an alternative to advice from a healthcare professional.
Being diagnosed with Chronic Myeloid Leukaemia (CML) can be life-changing and daunting, but you don’t have to do it alone. Here you will find the support you need to begin to navigate your journey with CML, so you can get on with living the best life you possibly can.
Be reassured, treatments for CML are continually being developed and improved, meaning the majority of people diagnosed can expect a normal life expectancy and a good quality of life if on the right treatment. In fact, survival rates for this type of blood cancer have significantly increased over the last two decades.1
This guide has been designed to support you with your conversations at appointments and check ups.
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Knowing what is happening inside your body will help you understand CML and how best to manage treatment and your lifestyle moving forward.
Hear Mark's inspiring CML journey, where he reflects on life with CML through speaking to his two sons and his partner, Elaine. They discuss what it was like when Mark was first diagnosed with CML, the impact on his loved ones, how they support him, the challenges they face and advice for others living with CML, whether they have just been diagnosed or have been living with the condition for a long time.
CML is a rare type of blood cancer that causes the bone marrow to produce too many immature and underdeveloped white blood cells, known as myeloid cells.2,3 It develops slowly and typically affects people over the age of 60.2
White blood cells are an important part of your immune system and if not fully developed, they cannot fight infections as well as they should. Although impaired, these abnormal white blood cells still have some ability to fight infections and because of this, some people with CML can live for a while with only mild, or indeed without any, noticeable symptoms.4
However, if left untreated, people with CML may find that they get a lot of infections that their body might struggle to fight, without the help of normal white blood cells. The abnormal cells can also build up in the bone marrow which blocks the production of healthy blood cells, such as red blood cells and platelets, both of which have very important roles in your body.1,4
Around 830 people in the UK are diagnosed with CML each year.4
Every cell contains a nucleus which holds chromosomes. These chromosomes are made up of DNA, a genetic code that tells a cell what to do.
Genes are smaller sections of DNA and they hold the information that makes you unique.4
Understandably, you will most likely have many questions after being diagnosed, one of them might be: how did this happen?
It is not clear why some people get blood cancer and others don’t. However, what we do know is that CML is caused by a rearrangement (translocation) of genetic material between chromosome 9 and chromosome 22.2,5
It is not yet understood what causes this genetic change to take place, but it occurs spontaneously and can happen to anyone. These changes are not typically inherited.1
The specific mutation that occurs in CML is a chromosomal change, known as the ‘Philadelphia chromosome’, where a part of DNA from one chromosome swaps with a portion from another. This causes the cellular machinery that produces white blood cells to become overactive, resulting in CML.1,2
Your symptoms will depend on which stage your CML is at.6 Remember, no two people are the same, so your symptoms could be slightly different to someone else with CML.
In most cases, this type of blood cancer develops slowly and may not cause any symptoms in the early stages – for some people it is only picked up during tests carried out for another reason.2 If there are symptoms earlier on, they are usually mild and develop gradually.7
Symptoms can include:2,6
Everyone is different and therefore may or may not experience all, or some of these common symptoms.
Various tests are carried out to diagnose CML – the information provided is important in identifying the best course of action in terms of treatment, however, speak to your healthcare team if you have any questions about your diagnosis, the tests, or would like to see a copy of your results.8
Understanding your CML will support you in making better decisions about how to manage your condition and the right treatment for you.8
For many people, CML is picked up in a blood test that is usually carried out for another reason. However, the tests involved in diagnosing CML typically include:8–10
In those people where the genetic test did not find the Philadelphia chromosome (BCR-ABL1 fusion gene), further tests (such as a polymerase chain reaction (PCR) test and a fluorescence in situ hybridization (FISH) test) can search for the BCR-ABL1 fusion gene, which can also confirm a CML diagnosis.8
A life-changing diagnosis such as this can be hard to get your head around, especially in the beginning.
You are not alone. Your healthcare teams and nurses are there to support you, so make sure to get all the information you need to be ready for your journey ahead:
Make a list of questions to ask your cancer team
Ask them to explain things in non-specialist terms and clarify as many times as you need to
You are allowed to ask 'why?'
Confirm your day-to-day point of contact
Remember, by attending your appointments you can play an active role in the management of your CML.
Staging CML means identifying what phase the disease is in: chronic, accelerated or blast. The tests carried out at diagnosis (blood test, bone marrow biopsy and genetic testing) help with this.11
This information is key in informing treatment decisions, and your care team will most likely have discussed this with you already.11
Be reassured that 9 in 10 people with CML are diagnosed in the chronic (early) phase, which is the easiest to treat.3,11 If the condition were to progress, it would be slow and unlikely to jump quickly from one phase to another.11
The majority of people with CML, especially those diagnosed in the chronic phase, have a very good prognosis. With the right management and treatment in hand, a person with CML could have a similar life expectancy to someone who doesn’t have cancer.12 If you have any questions about your prognosis speak to your cancer care team as they know you and your CML best.
Being aware of the treatment options available will help you to manage your CML in the best way possible. It is important that the treatment and management plan you agree with your healthcare team is one that works for you, as an individual.
Thanks to modern medicine and treatment advancements, it is possible to control CML for many years, with tyrosine kinase inhibitors (TKIs) being the most common treatment at present.13,14
A TKI is a targeted therapy that comes in a tablet form and works by stopping cancer cells from growing and multiplying.
Treatments depend on you as an individual and the stage your CML is at.13
Like any treatment, TKIs have potential side effects. Every person is different, so if you agree to TKI as a treatment option, you may or may not experience all or some of the side effects listed below:13,15,16
Side effects:13,15,16
For those who cannot take TKIs, or their condition has progressed past the early phase, chemotherapy may be an option. This type of treatment kills the cancer cells and can either be delivered by injections or in tablet form.13
Stem cell or bone marrow transplants are believed to be the only potential cure for CML; however, it is an intense treatment and is not suitable for everyone.13
As CML is usually treated with TKIs, changes to appearance are typically uncommon. Although if you receive chemotherapy, there may be some noticeable changes.16
A common side effect people experience during chemotherapy is hair loss, but this should not be expected when undergoing a purely TKI treatment plan. TKIs may cause hair thinning in the beginning, but this normally resolves on its own within six months to a year. Weight gain has also been reported by some people as a side effect of TKIs, however, if this is a concern, work with your cancer care team to ensure a healthy weight is maintained throughout your journey.16
Being diagnosed with CML does not mean you lose control of your future.
Understandably, you may have worries around employment, finance, participating in everyday activities and how your diagnosis will affect these things. Though your concerns are all valid, be reassured that you will get through this.
Life as you know it might change, but it won’t stop.
It may require some adjustment and adaptation, but some people with CML believe that the availability of effective treatments offering better prognosis, family support, ongoing awareness and understanding of their disease, along with knowledge on how to track treatment response, made adapting to life with CML easier.17
A diagnosis like this can be daunting at first but working closely with your cancer care team to create your personal management and treatment plan, is a great way to help you gain control and stay on track.
Throughout your journey, there will be plenty of ways to continually improve your CML treatment and management plan. In order to do this:
Keeping on track with your treatment and management plan is important when taking control of your CML journey. Though, there may be times where you need to change track and try something different to help you manage your CML better. Your healthcare team are there to support you every step of the way, so remember to openly discuss your symptoms, treatment response, and any other issues you may be experiencing – this will allow your team to reassess your treatment plan and make changes where appropriate.
If you find something isn’t working for you, the best thing to do is arrange an appointment to discuss it.
At your appointment:
| Ensure you have a list of questions you want to ask. |
| Prepare a list of new or changing symptoms or side-effects you have been experiencing, especially if it is having a large impact on your daily life (e.g. are you feeling overwhelmingly fatigued, or experiencing depression?). |
| Take a family member or friend with you – they can be a great support when it comes to navigating the conversation with your healthcare team and asking questions. |
| Be sure to ask about any updates to treatment guidance that could help improve the management of your CML. |
Being open about how you feel can prompt your healthcare team to review your treatment plan and see if there are any additional, or even alternative, ways to help manage your symptoms and/or reduce side effects.
It is important to make sure that you stay on track with any new changes in your CML management plan. Remember to continue logging your symptoms and keep your cancer care team in the loop.
Being diagnosed with CML does not mean you lose control of your future. Working closely with your healthcare team to create and refine your personal treatment plan is a great way to help you gain control, stay on track, and live your life the way you want.
Remember, you are not alone, and every appointment is an opportunity to ask any questions you might have. This guide has been designed to help you organise your thoughts and make the most of those opportunities. It may be helpful for you to print it and have it ready for your next appointment.
This guide has been designed to support you with your conversations at appointments and check ups.
As part of changing track and improving your CML management plan, small everyday changes to your lifestyle can be a great way to help you feel more in control of your CML.
Managing stress and regular activity can be important when navigating your CML, therefore it is worth considering:16
| Regular exercise – this could be walking, dancing, gardening, yoga or other forms of exercise. |
| Hobbies – continue to do activities that you enjoy or perhaps take up a hobby. |
| Relaxation and breathing exercises – this can help you to calm your mind and release tension. |
| Conversation – discuss your problems with someone who is a good listener or keep a diary and write down your worries/thoughts. |
| Connect – reach out to others who are affected by CML, join a support group or an online forum. |
Whether changing track , or keeping on track, managing your lifestyle and sticking to treatment plans will help you to take control of your CML journey.7
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References
Medlineplus.gov. Chronic myeloid leukemia: MedlinePlus Genetics. Available at: https://medlineplus.gov/genetics/condition/chronic-myeloid-leukemia/ Last accessed: September 2024
Blood Cancer UK. Chronic myeloid leukaemia (CML). Available at: https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-.... Last accessed: September 2024.