Living with myeloma

Updated 24 Oct 2017

There’s a lot of support you – and those close to you – might need if you’ve been diagnosed with myeloma. 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.

Watch Helen talk about living with myeloma and the importance of finding the right support

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.

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 myeloma 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.

If you have osteoporosis (the weakening of bones, making them more likely to fracture from minor impact) it’s advisable to keep as mobile and active as you can within your own limitations. It’s also best to avoid strenuous activity – for example, lifting heavy things, and take special care to avoid falling. Compliance with your bone strengthening treatment (bisphosphonates) will also help reduce the impact of osteoporosis.

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.

Because your immune system may not be working as normal, 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.

A diet for people with a weakened immune system is known as a ‘neutropenic diet’. 

Our Eating well with neutropenia booklet has more information on the neutropenic diet.

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Because the paraprotein or calcium in blood can damage your kidneys it’s very important to drink plenty of water. Unless you’re told otherwise, it’s best to drink at least three litres (about five pints) in total every day.

Vaccination

It’s a good idea for all myeloma 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. It might not work as well for people with myeloma but will still offer some protection. If you have myeloma, avoid having any live vaccines. Fortunately only a few vaccines are live – including yellow fever, oral polio vaccine, measles and shingles.

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 – there’s a risk of getting polio, as well as the risk of general infection from their stools.

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 myeloma.

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, normally on one side of your body
  • an itching, tingling or burning feeling
  • pain where the rash is
  • blisters filled with fluid which burst and form sores which then crust over.

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.

Complementary therapies

Updated 17 Nov 2017

Complementary therapies are treatments like massage, meditation or acupuncture that are used alongside standard medical treatments with the aim of making you feel better.

There’s no evidence to suggest that these therapies can treat or cure blood cancer, but there’s some that suggests some of them may help you manage your symptoms or the side effects of your treatment. Other therapies may just help you relax or improve your general sense of wellbeing.

Alternative therapies

There’s an important difference between complementary therapies, which are used alongside standard medical treatments (like chemotherapy and radiotherapy), and alternative therapies, which are offered instead of these treatments. We don’t recommend that you use any alternative therapy in place of proven medical care, but you may be interested in using complementary therapies alongside your treatment.

Keeping yourself safe

If you’re thinking about using complementary therapies, you should let your healthcare team know, so you can discuss what’s safe for you. They may advise you to avoid certain therapies because of specific risks to do with your condition or the treatments you’re receiving. In other cases, they may say a therapy is OK as long as you take specific precautions, like visiting a complementary therapist who’s a member of the relevant professional association or register. Your healthcare team can explain how to check this.

Some hospitals will have a complementary therapies team that offers sessions free of charge, while others might have a specialist who visits once or twice a week. Sometimes these therapies are there for your partner or close relatives, too. Your healthcare team will be able to tell you what’s on offer.

If your hospital doesn’t offer complementary therapies, there may be a local cancer centre or charity that you could visit instead. Speak to your healthcare team to see if they can recommend anywhere nearby.

Some people choose to see an independent complementary therapist.  If you do this, it’s important to make sure they will keep you safe. Speak to your healthcare team about what you need to keep in mind when finding a therapist.

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.

Myeloma UK

Offers patient information, a telephone advice and information line, an online discussion forum and support groups.

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.

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.

Tenovus

Provides an information service on all aspects of cancer, and practical and emotional support for cancer patients and their families living in Wales.

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. It also has a list of insurance companies recommended by people affected by cancer.

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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