- Introduction to myeloma
- What is bone marrow and what does it do?
- What is myeloma?
- What causes myeloma?
- What are the symptoms?
- Incidence of myeloma
- Stages and types of myeloma
- Coping with a myeloma diagnosis
- Early diagnosis and smoldering myeloma
- Diagnostic tests
- Treatment of myeloma
- How is treatment response measured?
- Dealing with myeloma symptoms
- Dealing with side effects of myeloma treatments
- Caring for yourself
- Dealing with the psycho-social aspects of the disease
- Preparing for medical check-ups
- Managing work and myeloma
- Insurance, financial and other issues
- Advance decisions: living wills
- Getting help and looking for resources
- Treatments, new targets and coming drugs to treat myeloma
- How does CAR-T cell therapy work?
- What are clinical trials?
- Finding out about myeloma clinical trials
Caring for yourself
It is important to talk with your doctor and nurses about myeloma and how it is affecting you. You need to understand fully what the diagnosis means, how your treatment is planned, and what you are likely to experience in the coming months and years. Ask your doctor about the aims of each treatment in your treatment plan. Myeloma is a chronic disease, and how it affects you will change as time goes by, so you need a good idea of what to expect.
In order that they can provide the right treatment and ease any pain or discomfort you may be experiencing, you need to tell the doctors and nurses about any symptoms, even if they seem unimportant like nausea or constipation. There are many ways in which they can help you be more comfortable, but this can’t happen if you keep these things to yourself. Don’t be afraid to share things that are bothering you; however small. Having a clear understanding of what you are experiencing will only help the medical professionals to get a full picture of the progress of your myeloma and how well your treatment is working.
A healthy, high-calorie diet with a high amount of protein will help to keep you active, prevent you feeling tired, and also help to fight infection. Eat a wide range of foods but include plenty of fruit and vegetables, poultry, fish and wholegrain bread. Make sure you drink enough water and other drinks to keep the kidneys working well (up to three litres a day), but it is a good idea to limit your intake of alcohol.
It is good to take what gentle exercise you feel able to, as this will reduce the loss of calcium from your bones and help you feel less fatigued.
Exercise will help to keep you fit, strengthen muscles and will also give a good feeling that you are looking after yourself. Walking, swimming and aqua-fitness are all helpful, as are exercise regimes like yoga and tai chi. Gym training is also helpful, providing you have the approval of a physiotherapist or sports trainer before you start, and that you warm up and cool down carefully before and after exercising to avoid muscle strain.
The greatest obstacle to taking exercise if you have myeloma is that your bones will be weakened. Strengthening your muscles will help to take the pressure off your bones, but exercise should be started very gently and gradually increased. If you have any pain, stop doing whatever caused it and only do what is comfortable. Contact sports, where you might easily knock into another person or sports equipment, should be avoided.
Plenty of rest and avoiding stress if at all possible will also help to keep you in good health.
Many medical conditions affect how patients feel about themselves and to lose interest in sex is not at all uncommon. Sometimes this can be because you feel too tired or in too much discomfort, and anxiety can also make sex something that just doesn’t appeal, at least at present. Alternatively, the cause may be a physical response to one or more of your medications. Not wanting to engage in sex can itself cause more stress between partners, if you feel depressed or unattractive, or if you or your partner feel unwanted or rejected.
It’s important to talk with your partner, so that you understand each other’s feelings and to make sure that neither of you misinterprets the situation. Once you start to talk, you should be able to find out what level of physical contact feels right for the time being, and then gradually develop that into a fuller intimacy when you are ready. Your doctors and nurses can also offer guidance and support; and they will not be embarrassed if you ask for help.
Because your immune system is weakened if you have myeloma, you may be more susceptible to various mouth problems and infections, like cold sores or thrush. Good dental hygiene, using a soft toothbrush, and keeping yourself well hydrated by drinking plenty of water are the best ways to prevent infection in your mouth. Any pain or discomfort in your mouth should be reported to your doctor or nurse, and can be relieved with antibiotic or pain-killing mouthwashes or by specific antifungal or antiviral treatments. You should avoid foods which increase the soreness through being salty, spicy or acid.
Myeloma treatments, especially at high doses, can make you more likely to have mouth ulcers or an inflamed mouth lining. Some other treatments can temporarily lower your blood platelet count (see section 5.2.17), and this can make you more liable to bleed from your gums. You may find that your mouth stays rather dry – this is because many myeloma treatments interfere with saliva production, and this can be relieved with an artificial saliva spray.
Pain in or damage to the jawbone (osteonecrosis of the jaw) is a very rare complication which may be linked to treatment with bisphosphonates and triggered by tooth removal. If you are about to begin bisphosphonate treatment, it is a good idea to have a dental checkup and any invasive dental treatment done first. Despite this very small risk, it is important for everyone with myeloma routinely to be treated with bisphosphonates to protect them from myeloma bone disease.
People who have myeloma are usually 65 or older. That means you can benefit from all that has been learnt in the last 20 years on the many general ways that all older people can benefit in health and wellbeing.
Active ageing is an idea that has been recognised by the world’s most influential organisations, including the World Health Organisation, the United Nations Economic Commission for Europe and the European Commission, and all these and more have developed guidance and recommendations. The basis of initiatives to support active ageing is helping people to remain physically and mentally active and independent, with a good quality of life for as long as possible and if possible, to contribute to the economy and to society. It is much more than a question of having a healthy diet and keeping up some form of exercise.
There will be times during your treatment for myeloma when you don’t feel able to be very active, and then you must of course be guided by your doctor and nurses, and your own body. But myeloma is a relapsing-remitting disease, which means that you can expect to have long spells when the myeloma is stable and you can carry on virtually all of your normal activities, or even find new ones. There is now significant evidence that people who try to maintain social activities benefit from better health, a greater feeling of support from others and a better feeling of wellbeing and self-esteem.
Apart from working, which is considered in the next chapter, you might find new enjoyment in many activities that are helpful to anyone in retirement, such as voluntary work, learning a new skill or developing an existing interest for which you have never had enough time before. An enormous number of life-long learning programmes are now available online for older people; many of which include local classes or visits. All of these will help you keep active, involved and interacting with like-minded people, and will use your knowledge and experience.