## [Help get your CML back on track](/uk-en/help-get-your-cml-back-on-track "Help get your CML back on track")
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.
#### Every journey needs a plan – take control of yours.
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
---
## Download our appointment guide
to help get your CML back on track
This guide has been designed to support you with your conversations at appointments and check ups.
[Download now](https://www.novartis.com/sites/novartis_uk/files/Novartis_CML_Discussion_Guide.pdf)
Jump to section:
[Get on track: Understanding your body and CML](/uk-en/help-get-your-cml-back-track#GetOnTrack "Get on track: Understanding your body and CML")
[Keep on track: Managing your CML in a way that works for you](/uk-en/help-get-your-cml-back-track#KeepOnTrack "Keep on track: Managing your CML in a way that works for you")
[Change track: Knowing how & when to speak to your HCP](/uk-en/help-get-your-cml-back-track#ChangeTrack "Change track: Knowing how & when to speak to your HCP")
[Complete our survey](/uk-en/help-get-your-cml-back-track#Survey "Complete our survey")
---
## **Get on track:** Understanding your body and CML
## Real-life perspective
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.
What is CML?
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
### Did you know?
Around 830 people in the UK are diagnosed with CML each year.4
What causes CML?
### Did you know?
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
What are the symptoms of CML?
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**
- Tiredness
- Unexplained weight loss
- Night sweats
- Tenderness and swelling in the left side of your tummy
- Feeling full after small meals
- Pale skin
- Shortness of breath
- Fever
- Bruising and bleeding easily
- Frequent infections
- Bone pain
Everyone is different and therefore may or may not experience all, or some of these common symptoms.
How is CML diagnosed?
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
- **Blood tests** – if results show a high level of white blood cells, that person is referred to a specialist in blood conditions (haematologist) for further investigation.
- **Biopsy of bone marrow** – a sample of the bone marrow is removed to be tested for cancerous cells, the type of blood cancer (in this case, it would be CML) and the stage it is at.
- **Genetic testing** – helps pinpoint what changes have occurred in more detail and is usually where the Philadelphia chromosome is spotted – this test confirms a CML diagnosis in 95% of people.
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
### Take charge and move forward
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.
What is CML staging?
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.
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## **Keep on track:** Managing your CML
in a way that works for you
## Know your options
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
Tyrosine kinase inhibitors (TKIs)
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**
- Nausea and sickness
- Swelling (in face and legs)
- Muscle cramps
- Diarrhoea
- Headaches
- Aching joints
- Rash or other skin issues
- Hair thinning
- Tiredness
- Muscle pain
- Shortness of breath
- Increased risk of picking up infections
- Aching joints
- Cardiac issues
- Weight gain
- Water retention
Other Treatments
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
Can your appearance change as a result of CML treatment?
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
A future with CML
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.
Keep track to keep going
Throughout your journey, there will be plenty of ways to continually improve your CML treatment and management plan. In order to do this:
- **Keep at it:** Adhere to your treatment and continue your management plan as advised by your healthcare team.
- **Keep a log of your symptoms and treatment side effects:** Things may change over time so keeping track allows you to spot things more easily and share them with your healthcare team. You know your body best, so if something feels off track, flag it.
- **Communicate with your healthcare professional:** Whether you feel great, or could feel better, regular discussions with your healthcare team (online or face-to-face) are so important in helping you manage your CML.
- **Stay informed:** Remain one step ahead and stay in the know about treatment advances and new ways to manage your CML. Make sure that you are prepared to change track if it is time to do so.
---
## **Change track:** Knowing how &
when to speak to your HCP
## Be prepared for change
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.
## Download our appointment guide
to help get your CML back on track
This guide has been designed to support you with your conversations at appointments and check ups.
[Download now](https://www.novartis.com/sites/novartis_uk/files/Novartis_CML_Discussion_Guide.pdf)
## Changing track can be stressful
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
**Complete our survey**
## We'd love to hear your feedback
We would like to understand about your knowledge of CML, and if this website has helped you on your journey with CML so we can continually improve our information and resources for patients. Please take a moment to complete the following - it’s completely anonymous so none of your personal data is stored. All responses will be pooled together and the collective results will be shared with Novartis UK for their information.
1. Are you here looking for information for yourself, your patient or for someone you know or care for with CML? Patient
Carer
Friend
Myself
Other
2. Have you downloaded the appointment guide today? Yes
No
3. How useful do you find this appointment guide? On a scale of 1 (not at all useful) to 5 (extremely useful).
4. How can we improve the functionality of this appointment guide? Please drag them to rank in your order of preference, with the top being most important and the bottom least important. Weight Make the existing pdf interactive
Weight for Make the existing pdf interactive-6-5-4-3-2-10123456
Have the ability to save answers between visits to the webpage
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Reduce the number of questions
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Add the ability to email results to your healthcare professional
Weight for Add the ability to email results to your healthcare professional-6-5-4-3-2-10123456
Add the ability to email results to yourself
Weight for Add the ability to email results to yourself-6-5-4-3-2-10123456
Have the ability to use this during conversations with my healthcare professional
Weight for Have the ability to use this during conversations with my healthcare professional-6-5-4-3-2-10123456
5. In your opinion, which parts of the appointment guide have been the most useful? Please drag them to rank in your order of preference, with the top being most important and the bottom least important. Weight The symptoms section
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The treatment side effects section
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Don't know
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N/A
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6. As a result of your visit here today, how confident are you, or is someone you know or care for, to discuss how to manage CML with your healthcare professional? On a scale of 1 (not at all confident) to 5 (very confident).
7. In your opinion, what content would you like to see more of as part of this campaign? Focus more on emotional support
Focus more on lifestyle guidance
Focus more on available financial support
Focus more on involvement with the patient
Other
Don't Know
N/A
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**References**
1. Blood Cancer UK. 2020. Chronic Myeloid Leukaemia (CML). Available at: [https://media.bloodcancer.org.uk/documents/Chronic-myeloid-leukaemia-CML...](https://media.bloodcancer.org.uk/documents/Chronic-myeloid-leukaemia-CML-Blood-Cancer-UK-info-booklet.pdf). Last accessed: September 2024.
2. NHS. 2019. Overview: Chronic myeloid leukaemia. Available at: . Last accessed: September 2024.
3. Blood Cancer UK. What is chronic myeloid leukaemia (CML). Available at: [https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-...](https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-myeloid-leukaemia/what-is-cml/). Last accessed: September 2024.
4. Cancer Research UK. 2019. About chronic myeloid leukaemia (CML). Available at: [https://www.cancerresearchuk.org/about-cancer/chronic-myeloid-leukaemia-...](https://www.cancerresearchuk.org/about-cancer/chronic-myeloid-leukaemia-cml/about). Last accessed: September 2024.
5. Medlineplus.gov. *Chronic myeloid leukemia: MedlinePlus Genetics*. Available at: Last accessed: September 2024
6. Blood Cancer UK. Chronic myeloid leukaemia (CML). Available at: [https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-...](https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-myeloid-leukaemia/). Last accessed: September 2024.
7. Macmillan Cancer Support. 2020. Chronic myeloid leukaemia (CML). Available at: [https://www.macmillan.org.uk/cancer-information-and-support/leukaemia/ch...](https://www.macmillan.org.uk/cancer-information-and-support/leukaemia/chronic-myeloid-leukaemia-cml). Last accessed: September 2024.
8. Blood Cancer UK. Chronic myeloid leukaemia (CML) symptoms and diagnosis. Available at: [https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-...](https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-myeloid-leukaemia/cml-symptoms-diagnosis/). Last accessed: September 2024.
9. NHS. 2019. Diagnosis: Chronic myeloid leukaemia. Available at: . Last accessed: September 2024.
10. Blood Cancer UK. Blood cancer tests. Available at: . Last accessed: September 2024.
11. Blood Cancer UK. Chronic myeloid leukaemia (CML) symptoms and diagnosis. Available at: [https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-...](https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-myeloid-leukaemia/cml-symptoms-diagnosis/cml-staging/). Last accessed: September 2024.
12. Blood Cancer UK. Chronic myeloid leukaemia (CML) prognosis. Available at: [https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-...](https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-myeloid-leukaemia/cml-prognosis/). Last accessed: September 2024.
13. NHS. 2019. Treatment: Chronic myeloid leukaemia. Available at: . Last accessed: September 2024.
14. Cancer Research UK. 2019. Chronic myeloid leukaemia (CML): Stages. Available at: [https://www.cancerresearchuk.org/about-cancer/chronic-myeloid-leukaemia-...](https://www.cancerresearchuk.org/about-cancer/chronic-myeloid-leukaemia-cml/stages). Last accessed: September 2024.
15. Macmillan Cancer Support. 2020. Tyrosine kinase inhibitors (TKI) for chronic myeloid leukaemia (CML). Available at: [https://www.macmillan.org.uk/cancer-information-and-support/treatments-a...](https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/tyrosine-kinase-inhibitors-for-chronic-myeloid-leukaemia). Last accessed: September 2024.
16. Leukaemia Care. 2021. Available at: [https://media.leukaemiacare.org.uk/wp-content/uploads/Living-Well-with-C...](https://media.leukaemiacare.org.uk/wp-content/uploads/Living-Well-with-Chronic-Myeloid-Leukaemia-CML-Web-Version.pdf). Last accessed: September 2024.
17. Hewison A, *et al*. Eur J Oncol Nurs. 2020;45:101730. doi: 10.1016/j.ejon.2020.101730.