Living with MPN

Updated 10 Aug 2017

There’s a lot of support you – and those close to you – might need if you’ve been diagnosed with a myeloproliferative neoplasm (MPN). As well as medical information about your condition, other information will be important – such as how to tell people, how to look after yourself emotionally and physically and practical advice about things like finances. 

> You'll find information below and in our Living with blood cancer section

Looking after yourself physically

Changes in your condition

You might need to live with symptoms for a long time – your healthcare team will be able to give you advice on how to cope with them.

Keeping active

You might feel tired a lot (fatigue). This might be caused by your condition and isn’t the same as normal tiredness which improves with rest and sleep.

While even the idea of doing something can be tiring if you’ve got fatigue, try to keep as active as you can because evidence shows that this could help to make your symptoms less severe.

Although staying active may help, there’s no evidence of any particular exercise programme improving your condition or how you respond to treatment.

Diet

Similarly, there’s no evidence that any special diet will improve your condition or how you respond to treatment. However, you’re likely to feel fitter and healthier if you follow general advice on good diet from your hospital or GP.

Some treatments can mean your immune system may not be working as normal, in which case you’ll need to take extra care to avoid infections that you might get from food. Your body won’t be able to destroy germs and resist infection as easily, so be careful about food ‘use by’ dates and things like keeping cooked and raw meat separate in the fridge. You may hear healthcare professionals talk about a ‘neutropenic diet’. This means a diet for people with a weakened system.

> Download or order our 'Eating well with neutropenia' booklet for more information about avoiding infections from food.

Where to get help and support

Many people affected by MPN find it useful to call on the expert information, advice and support offered by a variety of organisations, including ourselves. As MPN are blood disorders that are closely linked to blood cancers, many cancer charities will offer you support with your condition. Here are some we recommend.

Bloodwise

We offer patient information online and in free printed booklets, and have an online community you may like to join.

We can help with practical and emotional support and signpost you to other available services.

Macmillan Cancer Support

Offers practical, medical, financial and emotional support.

CancerHelp UK (Cancer Research UK’s patient support service)

Offers information about different conditions, current research and practical support.

MPN Voice

A specialist charity for people with MPN. They offer newsletters and patient events.

Leukaemia Care

Offers patient information, a 24-hour care line and support groups for people affected by leukaemia, lymphoma, myeloma, myelodysplastic syndromes, myeloproliferative neoplasms and aplastic anaemia.

African Caribbean Leukaemia Trust (ACLT)

The ACLT aims to increase the number of black, mixed-race and ethnic minority people on the UK Bone Marrow Register by raising awareness and running donor recruitment drives.

Anthony Nolan

Runs the UK’s largest stem cell register, matching donors to patients with leukaemia and other blood related disorders who need a stem cell transplant.

Maggie’s Cancer Caring Centres

Centres across the UK, run by specialist staff who provide information, benefits advice and psychological support.

Marie Curie Cancer Care

Nine hospices throughout the UK and offers end of life support to patients in their own homes, free of charge.

MedicAlert Foundation

Provides an identification system for individuals with hidden medical conditions and allergies, in the form of emblems you wear on your body and necklaces or wrist bands.

Financial advice

 

Citizens Advice Bureau (CAB)

Offers advice on benefits and help with filling out benefits forms.

Department for Work & Pensions (DWP)

Responsible for social security benefits. Provides information and advice about financial support, rights and employment.

Macmillan Cancer Support Grants

A Macmillan grant is a one-off payment for adults, young people or children with cancer, to cover a wide range of practical needs.

Travel insurance

 

Macmillan Cancer Support

Provides information about what to consider when looking for travel insurance, along with recommendations from the Macmillan online community.

Association of British Insurers (ABI)

Provides information about getting travel insurance and contact details for specialist travel companies.

British Insurance Broker’s Association (BIBA)

Offers advice on finding an appropriate BIBA-registered insurance broker.

Looking after yourself emotionally

Being told that you have cancer can be very upsetting and will almost certainly bring many different emotions. If you were diagnosed by chance, it can come as even more of a shock. Friends and family often offer a great deal of support, but it can be harder for them to understand the long-term emotional impact that you might experience.

Your healthcare team look at your emotional, as well as physical, needs – this is called a holistic needs assessment. You’ll have one a few times throughout the course of your treatment and beyond, as your emotional needs might change. You may be offered referrals to counselling and the opportunity to speak to the complementary therapy team, if this is something you think you’d find useful.

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