Living with MDS

Updated 10 Aug 2017

A diagnosis of myelodysplastic syndromes (MDS) will have implications for your daily life. Knowing in advance what to expect might alleviate some of the stress or worries around it.

This section will discuss some of the implications a diagnosis of MDS can have on your daily life and provide advice how to deal with certain issues.

Information about the disease and possible complications can help you recognise when to seek medical attention or ask for further support. It also can give you the feeling that you are more in control.

The psychological impact of MDS

It is important to emphasise that each person with MDS will cope in their own unique way. Not everything in this chapter will apply to you, but there are some common thoughts and feelings that you could be familiar with – and to some extent your relatives and carers too. Your healthcare team should be considering your emotional needs, as well as your physical needs, and should regularly ask you about these.

Adjustment

People living with MDS sometimes experience a range of complex thoughts and intense feelings as they try to cope with the diagnosis, monitoring or treatment. This is often described as ‘being on an emotional rollercoaster’. The formal term for these emotional ups and downs is adjustment. 
Adjustment is something every person will experience as they go through significant life events like divorce, bereavement or illness. It involves changes and losses of varying kinds, and includes both practical and mental adjustments. In the case of an illness these include: 

  • getting used to being monitored,
  • having medical appointments and treatments,
  • potential loss of – or reduction in – some physical capabilities which, in turn, could affect things like employment, or personal roles and relationships,
  • disruption to one’s usual life patterns and routines, and
  • questioning things normally taken for granted, like good health and future plans – perhaps making people more worried about things than usual.

Given the losses and changes involved – which to some can feel frightening – and the need to adapt to and cope with something new, adjustment can be both stressful and distressing. The good news is, that while the emotional ups and downs of adjustment aren’t always easy, human beings have evolved to be adaptable and to cope with life’s difficulties. 

Coming to terms with your diagnosis

Although everyone is different, generally it is helpful to ‘process’ your thoughts and feelings, rather than ignore them. This means thinking about your diagnosis, including what it means to you and how you might cope. It means being aware of your feelings and being able to express them when you want to. It can be helpful to talk about your situation with other people, both professionals and those in your personal life. Writing thoughts and feelings down can help you to process them too. It is useful to strike a balance between thinking and talking about your situation, and having periods in which you focus on other, meaningful and enjoyable things instead.

There is a link between thoughts, feelings, physical feelings and behaviour

Before we move on, it is useful to explain that within every type of mood there are four elements: thoughts, feelings, physical sensations and behaviours (the actions we do, or don’t do, to cope). Each of these elements interacts with and affects the other.

It is hard to directly ‘access’ and change an emotion, whereas thoughts and behaviours and, to some extent, physical states, are more easily changed. This can help to improve emotional feelings. It is particularly effective to change negative thoughts and thinking patterns. In short, the way we think affects the way we feel.

Managing thoughts

Writing negative thoughts and worries down can be helpful. You will notice that some of them are ‘valid’ (this means understandable and acceptable) given your situation, but some of them are ‘catastrophic’ (meaning they predict the worst case scenario) or are very ‘black and white’ (meaning things are all good or all bad). Here are some examples:

  • “Because of this illness, my life’s ruined.”
  • “I know the treatment won’t work.”
  • “Nothing ever goes right for me.”
  • “Everything’s awful.”
  • “There’s no hope.”
  • “I must be a bad person.”

Take a step back and ask yourself whether those thoughts are facts or opinions. Say to yourself “is there another way of looking at this?”, or “is that actually what my medical team said to me?” Write down alternative, more helpful thoughts next to the original worries. This is not the same as ‘positive thinking’, as you may have some valid concerns; it is about maintaining perspective, having a balanced view, and not getting too caught up in your thoughts.

Changing behaviour

Some types of behaviour make emotional distress worse. For example, when people avoid activity, socialising and exercise (even doing basic things like having a shower and getting dressed) they make depression worse, rather than better. And when people avoid situations that make them anxious, this tends to make the problem worse, rather than better.

Behavioural change, which includes engaging in enjoyable and meaningful activities, doing even a little exercise, moderating alcohol consumption, and connecting with other people will help your mood. Another helpful behaviour is ‘pacing’. This means doing a consistent amount of activity on a regular basis, and not overextending yourself on a good day. This tends to result in people being so exhausted that they cannot function for a few days.

Specific emotions and their coping strategies

This section will describe some of the thoughts and emotions that are possible and help you to understand why you might have these feelings. It includes some suggested coping strategies and ways in which you could help yourself. These are drawn from evidence-based psychological practices, as well as feedback from patients about what has helped them. It is important to remember that not everyone will experience all of these feelings, but it is equally important to emphasise that if you have some – or all – of them, you are not alone and it does not mean that you are weak or mentally ill.

Shock, disbelief, helplessness and feeling out of control

These feelings and sensations are common when people experience something outside of the realm of their normal experience, like a diagnosis of a serious illness. The situation can feel threatening and people wonder whether they can cope. These thoughts and feelings can be so overwhelming that people become shocked or numb as a means of protecting themselves. Some people describe a sense of unreality.

Coping strategies:
  • Time is needed for the information to sink in and to be ‘processed.’
  • It can be helpful to talk things through with others and to express feelings. This helps people to make sense of their situation and to think about how they will cope.
  • Having access to the right information at this time is important. It can be difficult to take everything in, so it can be useful to write questions down that need answering or clarifying by the healthcare team. 
  • ‘Grounding’ techniques can be useful. These are simply things people can do to bring their awareness to the reality of the present moment, in other words to feel less detached or unreal. You can find more information on grounding techniques at getselfhelp.co.uk.

Worry, anxiety and living with uncertainty

MDS often carries with it a degree of uncertainty which can lead to worry and anxiety. It is normal to experience fear about something which is threatening. The emotional response to fear is anxiety, or even panic. This tends to be driven by the physical response to fear, which is a release of adrenaline into the blood stream. This leads to many of the physical symptoms of anxiety like increased heart rate and dry mouth. The mental part of fear is worry. This is what people do as they try to predict and control things that might happen in the future. While it is normal for people to worry about their illness to some degree, excessive worry will lead to chronic anxiety and exhaustion.

Coping strategies:
  • Managing the physiological part of anxiety is key. It helps to reduce the emotion of fear and to stop the pulse - and thoughts - from racing.
  • To do this, it is necessary to reduce hyperventilation (over breathing) and excessive adrenaline production, which are always present in anxiety.
  • Slow, controlled breathing is the most effective method. Practices like mindfulness and meditation can be useful, but there are a number of different breathing exercises that are helpful. For examples of these online, visit getselfhelp.co.uk and patient.co.uk
  • Reducing tension in the muscles is another means of alleviating anxiety.
  • A widely-used technique is called ‘progressive muscle relaxation’. This gets people to consciously tense and un-tense their muscles to induce relaxation. 
  • Notice your negative thoughts and worries and write them down to challenge them.
  • Take gentle exercise.
  • Various forms of distraction, or mental exercises like Sudoku, can help.

Finally, a vital aspect of managing worry is to accept that some things you cannot know in advance or control. Also, while it is possible to reduce some of the symptoms of anxiety, it is not possible to eliminate them altogether. As human beings, we all live with a degree of anxiety. A useful means of managing uncertainty is to focus on the ‘here-and-now’ – on the things you can change, and on the things that you find meaningful and enjoyable in the present moment. 

Anger

It is common for people to feel angry that they have been diagnosed with a serious illness. For a number of reasons it can feel confusing, unfair, or that it is outside of their control – for example, if the illness is rare, if they believe that they have a healthy lifestyle, if there’s no history of similar illnesses in their family, or if they believe that they have already had too many problems in life to cope with. Sometimes it can be difficult to know what to do with feelings of anger or to understand what – or who – the anger is directed at. As a result, anger can sometimes get directed at loved ones, or even towards one’s self. 

Coping strategies:
  • Although a sense of disbelief or injustice at being diagnosed with MDS is valid (and common), dwelling on the thoughts behind it tends to make the anger worse. Talk things through with others.
  • Write down some of your thoughts and notice those that keep the anger going; try to change them or distance yourself from thoughts about things that have no explanation or cannot be changed.
  • Use relaxation techniques, or exercise, for managing the physiological symptoms of anger (similar to those in anxiety, and also driven by adrenaline).
  • ‘Venting’ anger at others tends to be self-defeating because it alienates people, rather than elicit feelings of compassion from them.
  • Self-soothe. Treat yourself to things you enjoy; treat yourself with compassion.

Stress 

We experience stress when we feel that we are under too much pressure or have too many demands being made of us and that we don’t have the resources to cope. Understandably, people can feel like this at times when they are ill and they are trying to cope with the demands of treatment as well as with other concerns, for example financial, employment and relationships. The emotional symptoms of stress can include low mood, anxiety and irritability.

Coping strategies:
  • Relaxation techniques (controlled breathing, progressive muscle relaxation) and/or exercise to manage the physical, adrenaline-fuelled aspects of stress (which are the same as those in anxiety and anger).
  • Notice the negative thoughts which contribute to anxiety, tension and irritability, producing adrenaline as they arise: “this is unbearable”, “I can’t cope”.
  • Challenge negative thoughts by writing them down and coming up with more helpful ones e.g. “although this is difficult, I can cope (especially with support)”.
  • Plan, prioritise, break things down into manageable ‘chunks’ (writing this out is helpful).
  • Pace yourself, rather than doing too much or trying to cope with everything at once.
  • Take breaks, and ‘time out’.
  • Ask for help and support.
  • Maintain a ‘here and now’ focus on things that are enjoyable and meaningful to you.

Guilt and blame

Although becoming ill is never anyone’s fault, it is common for people to experience feelings of guilt and blame about their illness. For example, people might question whether they became ill because of something they did, or their ‘lifestyle’. Some people might think that they are a burden on other people because they need their help, or because they are not functioning as they once were. Although these thoughts are common, they are not valid. They can be part of people’s attempts to find meaning in the situation, but what they do is to make people feel bad and distressed about themselves.

Coping strategies:
  • Write guilt and blame thoughts down and try to come up with more balanced and rational thoughts.
  • Don’t dwell on these negative thoughts.
  • Think about what you would say to a close friend or loved one if they were having these thoughts and feelings – and apply this to yourself.
  • Make a conscious effort to be more compassionate towards yourself.
  • Do some things which are comforting and soothing.

Sadness, low mood, hopelessness and despair

It is natural and normal for people to experience feelings of intense sadness at times when they are ill. Sometimes it can feel that things aren’t going well or that they will never be the same again. Some days people can feel very down, but usually these feelings are temporary and people tend to say that they have ‘good days and bad days’. 

Depression is when people feel persistently sad and hopeless for two weeks or more – and when these feelings are combined with having no interest or pleasure in life, having disrupted sleep and appetite, feeling worthless, and people thinking they would be better off dead.

To some extent, sadness, low mood and clinical depression sit along a continuum. At one end, sadness tends to be an appropriate response to a specific situation, which fluctuates and gradually diminishes over time. In the middle, people can have ‘down days’ or ‘feel blue’. At the other end of the spectrum, depression (often called clinical depression) is more severe and persistent, and it affects the whole of your life and stops you from functioning.

Dwelling on negative thoughts is one of the things that makes low mood much worse and keeps it going. Often the thoughts are self-critical and hopeless in nature; they are nearly always ‘black and white’ or catastrophic. It can be hard to ‘see’ or believe anything positive about life, but all too easy to notice and believe negative things. As with the other emotions, writing down negative thoughts and trying to change them can be helpful, as well as talking things through with others. This helps people to gain some perspective and to feel less hopeless.

The other thing that helps depression is doing more and engaging with others. This helps to increase a sense of pleasure and reward from life. 

Coping strategies:
  • Activate yourself as much as possible; do more, rather than less. Take gentle exercise and don’t stay in bed or on the sofa.
  • Connect with other people.
  • Consciously plan and schedule activities, social time and pleasurable things.
  • Try to ‘capture’ negative thoughts and come up with more helpful and balanced thoughts.
  • Remember to ask yourself: “is this a fact or an opinion?”; “what’s the evidence?”; “is there another way of seeing this?”; “what would I say to my best friend or partner if they thought this?”.

Useful online resources: 

It is often helpful to seek support if you are sad or low in mood, but it is essential to do so if you are depressed, especially if you are feeling suicidal. If you are feeling depressed, talk to your GP and to your healthcare team so that they can organise formal support for you. Talking therapies can help, and medication if necessary.

Grief

Grief is what people experience when they are mourning people, things, or aspects of ourselves that they have lost. Grief includes most of the emotions described above, especially sadness, as well as a kind of yearning for what has been lost (in other words, you wish you could have it back). In the case of illness this might include previous roles and responsibilities, previously enjoyed activities, fertility, certain freedoms and choices, health and vitality. As grief is a normal response to loss, it cannot be rationalised away. Loss is something that people can learn to live with – and cope with – over time, especially as they adapt to their changed circumstances and engage with other aspects of life. 

Coping strategies:
  • Although grief is a normal process, a preoccupation with certain types of negative thoughts and beliefs, e.g. “I cannot cope without X, my life isn’t worth living now”, will make it worse and keep it going.
  • It can help to write down and challenge thoughts like this.
  • Especially helpful for grief is for people to be able to talk about their feelings and about what, or who, has been lost. For a while, many people who are grieving need to be able to ‘tell their stories’ again and again.

Summary

A diagnosis of MDS affects the whole of you, not just your body and the complex mixture of thoughts and feelings associated with a diagnosis of MDS is common and legitimate. Although they can be unpleasant, they are a normal response to a major life event. Emotional distress of varying kinds can be experienced at any point in your ‘journey’ but it's important to remember there is support out there and ways in which you can help yourself.

Impact of MDS on partners or carers

As with all cancer diagnoses, MDS may also have an impact on other members of the family. As MDS is often diagnosed in the elderly, there may be other health issues in the family that require attention.

An initial diagnosis will inevitably cause feelings of concern and anxiety and may cause disruption to the normal life of partners and carers as well. All emotions mentioned above about psychological support, may very well also apply to the rest of the family or close friends.

It sometimes happens that the information needs of the patient and the partner differ, where one wants to know more than the other. This can lead to feelings of frustration, misunderstanding or anger. Coping mechanisms may differ too and cause similar feelings.

The support of the partner or carers is very important. Carers who wish to find out more about the disease can look at our signposting and useful contacts section. Carers can also attend support groups in confidence and ask any questions that may help them better understand the needs and care of the person with MDS. Support groups can also help with advice when indeed the need for information differs between carer and patient.

If the burden of caring for someone is too much, respite can be arranged via carers associations. Details of these groups can be found in the signposting and useful contacts section.

Extra support at home

You may find that the MDS or the consequences of the treatment have an impact on your independence.

Most patients will have family or friends who can step in when certain tasks or activities need to be taken over. But not everyone will have this kind of support. 

Speak to your GP if you need additional help at home. They can arrange a social worker to assess your situation and the support that needs to be arranged.

When you are in hospital, an occupational therapist can assess your abilities and discuss the support and other resources that you need at home. Support arranged from hospital can normally be arranged very quickly, but can take some time if arranged via a GP.

Palliative care

Some treatments for MDS can cause symptoms that require more than the normal interventions. The palliative care team can provide additional advice and support when symptoms are not easily controlled. Symptoms such as nausea and vomiting, breathlessness and pain are examples of symptoms regularly dealt with by this specialist team. Their input can be temporary or for a longer period of time, in hospital but also in the community. 

Some medical treatments can be fairly aggressive and call for equally aggressive palliative approaches to your care. Treatments provided by your palliative care team can help you tolerate the side effects of these treatments. And it helps you have more control over your care by improving your understanding of your choices for treatment.

Not all treatments, sadly, are successful and sometimes patients have to be told that the disease is too progressive for any treatment to control it. Discussions around end of life will then begin. That conversation will most likely be started by your medical team. Most hospitals will have palliative care teams that have experience in dealing with end of life and related symptom control. Alternatively you can be referred to a community palliative care team connected to your local hospice. Additional support can be organised either at home, at the hospital or at a hospice in accordance with the wishes of the patient and carers.

Work and finances

MDS and its treatment can sometimes lead to difficulties relating to your work life. Sometimes it leads to temporary sick leave or reduction in working hours but it can also mean that you have to stop work altogether. This will most likely have financial consequences for you and your family.

Your consultant can guide you in these decisions and either the hospital or your GP can arrange letters to confirm your situation to your employer. It is often worth taking time to explain MDS to your employer, as it is likely they will never have heard of the disease. 

Macmillan Cancer Support has published a booklet about financial support when diagnosed with cancer. They can also give you personal advice over the phone via their helpline and you can discuss which benefits you are eligible for. Some Macmillan centres can arrange face to face meetings with a benefits advisor. Please visit the Macmillan website for more information. They can also provide financial assistance in the form of grants – ask your nurse in the hospital how to apply.

As MDS is regarded as a cancer diagnosis you will also be entitled to apply for a medical exemption certificate which means that you are entitled to free NHS prescriptions. Your GP or specialist nurse at the hospital can provide you with the details how to apply for this. Most hospitals will also have special arrangements for patients on benefits to claim their travel expenses back.

Sexuality and fertility

For some people, sex is an important part of their lives; for others it might be less so. A diagnosis of MDS can impact on your sex life in several ways. For example, you may feel more fatigued and want to reserve your energy for other activities; the treatment sometimes requires you to be admitted and as a consequence separate you from your partner; you may feel less attractive due to hair loss, skin changes or reduction in weight; or perhaps worries can make you feel less interested in sex. Treatment with chemotherapy can also make sex more difficult as it can cause changes in the mucous membranes resulting in dryness and painful intercourse for women and men can experience erectile problems.

If you are in a sexual relationship, it may help to talk to your partner about the changes you are experiencing and how you are feeling. Your partner may struggle with the subject as well and wait for a sign that you are ready to talk about it. Alternatively, you may want to talk to your GP or nurse who may be able to put you in touch with a sexuality expert or counsellor.

Certain treatments for MDS can have consequences for your fertility and during some of the treatments you will be asked to takes measures to prevent a pregnancy. Lenalidomide is a drug that is NICE approved for a specific group of MDS patients. It can cause birth defects and you will be asked to use contraception during and after this treatment. The same applies for people who are treated with chemotherapy drugs. Most people who have an allogeneic transplant will be permanently infertile afterwards. 

Men have the option to freeze their sperm before starting their treatment. If treatment does not need to be started urgently, women also have the option of freezing their eggs. The medical team should discuss these options with you when treatment is required. Do not hesitate to raise theses issues yourself if you feel this is important to you.

Changes in sex life and possible infertility may cause a range of difficult feelings. Do speak with someone close to you or your doctor, nurse or counsellor when this is negatively affecting you and ask for professional support when you feel you need this.

> For more information about fertility options ahead of a stem cell transplant, download or order our booklet: The seven steps: blood stem cell and bone marrow transplantation 

Fatigue

Fatigue is one of the most widely reported side effects of low haemoglobin levels.

Fatigue or lack of energy can seriously impact on your quality of life. A blood transfusion can improve fatigue temporarily – for some it may be a few weeks, for others it may last longer. Treatment for MDS can initially make your fatigue worse but if the treatment is effective and your blood levels recover, fatigue levels can improve over time.

When you feel fatigued you may find it hard to concentrate or make decisions. The worries of having MDS and dealing with treatment can also add to the feeling of being tired all the time.

Adjusting your lifestyle to your energy levels can be a difficult process. Some general tips how to deal with fatigue include:

  • have a regular lifestyle – try going to bed and waking up approximately the same time every day and try to avoid lying in,
  • take part in regular, gentle exercise to maintain your fitness levels as much as possible,
  • keep energy for eating. Use ready-made meals if cooking is too tiring,
  • wear clothes that are easy to put on and take off,
  • sit down on a plastic chair for showers, or washing your hair,
  • sit down when doing certain jobs, like ironing or cooking,
  • reserve your energy for what you find important and build rest periods around those times,
  • avoid stimulants before going to bed such as alcohol, coffee, tea or chocolate, or using laptops, tablets or mobile phones,
  • keep your bedroom quiet and at a comfortable temperature,
  • ask for help from family and friends,
  • talk about your worries with family, friends or your doctor or nurse, or patient support groups, and
  • discuss your fatigue with your doctor or nurse.

Many patient support organisations have booklets, factsheets and videos on managing fatigue.

> You can find contact details for patient support organisations in our signposting and useful contacts section

> You can get useful information about managing fatigue from Macmillan Cancer Support

Nutrition and exercise

Eating well and maintaining a healthy weight will give you more strength and energy. A healthy diet includes: 

  • lots of fruit and vegetables, 
  • a good proportion of carbohydrates (bread, rice, pasta, potatoes),
  • some protein rich foods (meat, poultry, fish, nuts, eggs, pulses),
  • some dairy products,
  • a low proportion of foods that are high in salt, fat or sugar, and
  • plenty of water, juices, sugar-free drinks, a little tea and coffee.

You will most likely not benefit from an increase in iron rich foods as most patients with MDS will have normal or high ferritin (a protein that stores iron) levels. There are many theories about specific diets and cancer available. Always discuss with your nurse or doctor before starting a strict diet.

Although in general a healthy diet is advised, for some people this may be difficult. Especially when you have had chemotherapy or a transplant as your appetite may be strongly affected. Foods that previously tasted nice may not now and you may find that you lose weight. Nutrition is very important in this situation as this is the source for your body to rebuild itself. If your weight loss is more than 5% of your normal body weight, it is important that special measures are put in place to support you. A referral to a dietician is usually the first step, who will then advise and guide you further.

> Download or order our 'Eating well with neutropenia' booklet for more information 

There is no specific guidance with regards to exercise and MDS. As long as your energy levels allow, you can be active as you like to be. If your platelets are low, however, you will have to be careful with falls or bumps as this may cause serious bleeding. 

In general, the more active you remain before, during and after treatment, the easier you will recover after having treatment. Some hospitals will provide exercise programs for patients during and after treatment. Ask your nurse or doctor if you want more information about this.

Infection and reducing the risk of infection

When you are neutropenic (low levels of neutrophils) and you feel unwell or feverish at home, it is very important to immediately seek medical attention at your nearest hospital. If you are alone or too unwell to leave the house, call an ambulance so that they can bring you in. Patients with the combination of an infection and neutropenia can deteriorate rapidly and should be started on intravenous antibiotics as soon as possible. If you don’t have a thermometer, it is advisable to buy one so that you can measure your temperature when you are at home. 

Call your hospital team if your temperature goes above 38C.

Most patients with MDS will be more susceptible to infections. Infections can occur more frequently and also last longer than normal. Patients receiving treatment for their MDS will be more vulnerable and they will start on drugs to prevent infections.

Good hand hygiene is the best way to prevent catching bacterial infections. There are lots of gels for sale but normal hand washing with water and soap is just as effective. In particular, make sure that you wash your hands after using the toilet, when preparing food, before you eat, after gardening and touching animals.

Try to avoid people who are unwell and ask your friends and family not to visit when they have cold or flu symptoms. 

Normal food hygiene rules apply when you have MDS. When you are on treatment and especially when your neutrophil level drops, you may be asked to avoid certain foods. This varies per hospital. Ask your doctor or nurse for instructions for your specific situation.

> If this applies to you, you can also download or order our 'Eating well with neutropenia' booklet. 

When you are planning to travel, ask your doctor if you should bring or take antibiotics to prevent any infections. Especially if you have experienced picking up infections easily, this may help avoid any problems while abroad.

Avoiding infections is not always possible. It is useful to have a thermometer in the house in case you develop a fever so that you can check and inform your doctor or nurse. They can advise you better if they have an accurate temperature level. Most centres will have emergency contact details in case you become unwell at home. Ask your doctor or nurse about the arrangements in your local hospital. 

If your neutrophil count is low and you have regular infections, you may benefit from injections that can boost your neutrophil levels. GCSF (granulocyte colony stimulating factor) is a drug that can be given under the skin. It is a hormone that is normally produced in the body and stimulates the growth of white cells in the bone marrow. The injections can cause pain in the bones and muscles which can usually be relieved by taking a mild painkiller, like paracetamol. You can be taught to take these injections yourself, or alternatively a family member, GP or nurse can do it instead.

Blood results

Most patients will learn to keep a record of their visits and blood results and specially designed diaries or apps for your mobile phone are available to record these results. This can be valuable information, especially if you are under the care of more than one hospital or department. Knowing your own blood levels can help you understand why you have certain symptoms and what to do in those situations. You can ask your nurse or doctor to explain the results to you.

The most useful levels to know are:

  • Your Hb or haemoglobin (contained in red blood cells) – they carry oxygen around your body and are an indicator whether you are anaemic or not.
  • Your platelet count (or thrombocytes) – when these are low you can be prone to bruising or bleeding.
  • Your white cell count – these are cells that fight infections.
  • Your neutrophil count – these cells are part of the white cells in your blood. Neutrophils are the first line defence when there is a bacterial infection. When these cells are low, you are neutropenic, which can make you more susceptible to infections.

Hospital visits

A diagnosis of MDS will inevitably involve regular hospital visits. These can vary greatly depending on the severity of the symptoms and the progression of the disease. People with low-risk disease might only need monitoring every few months or even yearly, while others might need weekly checks. Your doctor or nurse will guide you in how often visits and blood tests will be needed. 

All patients diagnosed with MDS have the right to be referred to a Centre of Excellence for MDS (you can find further details in our signposting and useful contacts section). These are academic hospitals with expertise of this rare disease and availability of new drugs via clinical trials. You can ask your doctor if you would benefit from a referral to a Centre of Excellence or ask for an additional opinion when you have questions about your treatment or disease management. 

The National Institute for Clinical Excellence (NICE) guidance, published in 2003, promotes that all haemato-oncology patients should have a designated clinical nurse specialist (CNS) who is available throughout their disease pathway to provide support and information. If you have not been introduced to a CNS, ask your doctor if there is one available in the hospital where you are treated and request the contact details.

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