Living with T-ALL

Updated 10 Aug 2017

There’s a lot of support you – and those close to you – might need if you’ve been diagnosed with T-cell acute lymphoblastic leukaemia (T-ALL). 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 and beyond blood cancer section

Looking after yourself

When you're diagnosed with leukaemia, and if you're having treatment, you might find that there's a physical impact on your day-to-day life.

Changes in your condition

If you've finished treatment, you may wonder whether there are any specific signs or symptoms you should look out for. Because treatment can have an impact on your immune system, it might not be working properly so a minor infection could become more serious if it’s not checked out.

It’s always a good idea to contact your healthcare team if you have any symptoms after your treatment or any changes in your general health. There’s lots of possible symptoms you could see – everyone’s experience will be different depending on which part of their body has been affected. If you find any new swellings, make sure you contact your healthcare team. If you’re in any doubt you should seek medical advice straight away.

Keeping active

You might feel tired a lot (fatigue). This might be caused by your treatment or 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 that any particular exercise programme can improve your condition or how you respond to treatment.

Shingles

Shingles is the infection of a nerve and the skin around it. It can affect you if you’ve had chickenpox, even if you had it a long time ago, as it’s caused by the same virus which can lie dormant in your body for years. You’re more likely to get shingles if your immune system isn’t working well – for example if you have leukaemia.

Shingles has some quite obvious symptoms. If you think you have it, let your GP or specialist know as quickly as possible (within 24 hours of the rash appearing is best). If it’s treated early, the symptoms won’t be as bad.

Symptoms include:

  • a rash – blisters filled with fluid which burst and form sores which then crust over, usually confined to one side of the body
  • an itching, tingling or burning feeling
  • pain where the rash is.

You can’t catch shingles from someone who has it, but you can catch chickenpox from someone with an open shingles sore, if you haven’t had chickenpox already.

Diet

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.

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.

Vaccination

It’s often a good idea for leukaemia patients to have the flu vaccine each year – your GP might contact you about this but if they don’t then you can request the vaccine yourself. 

Babies who have received the oral (by mouth) polio vaccine will pass live virus in their stools (faeces). Because of this, avoid contact with their nappies and the contents – as well as the risk of general infection from their stools, there’s a risk of getting polio.

Where to get help and support

Many people affected by blood cancer find it useful to call on the expert information, advice and support offered by a variety of organisations, including ourselves. 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 advice and emotional support.

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

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

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.

Teenage Cancer Trust

Offers a range of information, advice and practical support to younger patients.

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.

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.

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