Myelodysplastic syndromes (MDS) are a group of conditions that lead to abnormalities in blood and bone marrow. Blood is made up of different types of cells.

These cells are made in the centre of bones, in a part called the bone marrow.

When people have MDS, their bone marrow does not work normally. It makes abnormal blood cells and does not make enough normal blood cells. This can cause symptoms.

Symptoms

Some people with MDS have no symptoms. They might find out that they have MDS after they have blood tests for another reason.

Other people do have symptoms. They may include:

  • Feeling weak, tired, or dizzy
  • Having trouble thinking clearly
  • Shortness of breath 
  • Bruising or bleeding more easily than usual
  • Getting infections more easily or more often than usual

Diagnosis

To test for MDS, your doctor or nurse can do:

  • Blood tests
  • Bone marrow biopsy – During this procedure, the doctor removes a small sample of bone marrow with a needle. Then another doctor looks at the cells under a microscope to see if abnormal cells are present

There are different types of MDS. Your doctor will use your test results to figure out which type you have.

At the Myeloid clinic you will see a doctor who is an expert in treating blood conditions (haemato-oncologist). The haemato-oncologist might suggest the following tests.

Bone marrow biopsy

A small sample of your bone marrow is examined under a microscope. The biopsy is usually carried out as an outpatient under a local anaesthetic (meaning you don’t go to sleep).

The sample is checked for the presence of abnormal (dysplastic) cells or leukaemia cells. If they are present, the biopsy will also determine how bad your MDS is by getting additional information from other tests carried out on bone marrow biopsy.

Further tests

Additional tests might be used:

  • Cytogenetic and molecular testing: This identifies the genetic make-up of the abnormal cells. This can have an important impact on treatment. Certain genetic types respond better with special treatments.

Treatment at The Clatterbridge Cancer Centre

MDS treatment ranges from simple ‘watch and wait’ to intensive chemotherapy and stem cell (bone marrow) transplantation. Your doctor will discuss your disease with you and explain options for managing it. You might be assessed to check your fitness for intensive chemotherapy if needed.

The right treatment for you mostly depends on the type of MDS you have, your symptoms, and overall health. Most treatments do not cure MDS but treatments can improve symptoms and help you feel better.

Planning treatment

Specialists from different medical areas meet weekly to discuss patient treatment options. This multidisciplinary team meeting (MDT) is central to the way we work. The MDT gives advice, support and creates individualised patient plans – so you get offered a treatment path that is right for you.

Doctors usually treat MDS with one or more of the following.

A blood transfusion is when a person gets blood that was given (donated) by another person.

Doctors can use different types of medicines to treat MDS. The medicines work in different ways. Some medicines help the bone marrow make more blood cells. Other medicines affect the body’s infection-fighting system.

Chemotherapy is the medical term for medicines that kill cancer cells or stop them from growing. It can be used to target the abnormal cells found in MDS.

This treatment uses chemotherapy to kill the abnormal cells in your bone marrow. These dead cells are then replaced with ‘donor’ cells. There are various donor sources. They usually come from people whose tissue type matches yours. Stem cell transplant is the only treatment that can cure MDS. 

Read more about stem cell transplants at The Clatterbridge Cancer Centre 

Your doctor or nurse might also talk with you about being in a clinical trial. A clinical trial is a research study that uses volunteers to test new treatments or new combinations of current treatments.

After treatment

What happens after treatment?

After treatment, you will have check-ups every so often so we can watch for any signs that the leukaemia might have come back. Regular follow-up tests include talking with your doctor, physical check-ups, and blood tests. Sometimes, the doctor will also do a bone marrow biopsy.

What happens if the leukaemia comes back?

If the leukaemia comes back, you might have more chemotherapy, radiation, a stem cell transplant or we might offer other treatments to help you with symptoms or supportive care.

Our team

We diagnose and provide specialist care for myelodysplastic syndromes (MDS) and we are with you every step of the way. Specialist myeloid nurses stay with you throughout your treatment journey, from your first clinic appointment to aftercare. They are there to help with problems and questions you – or your family – may have.

If you come to the hospital you can expect:

  • Experts working together to give you the best treatment.
  • Access to cutting-edge treatments – Clinical trials are vital in the fight against MDS. Our trials programme makes the latest treatments available to patients – offering the best chance of beating the disease.
  • Regional treatment centre of treatment – The hospital is the regional centre for bone marrow and stem cell transplantation, important for the treatment of some patients with MDS.
  • Research-driven care - As a major cancer centre, we lead research into leukaemia diagnosis, biology and treatment. We regularly publish research papers that help in the fight against blood cancers (65 in the past five years).

Some of the services we provide include:

  • Clinics in Clatterbridge Cancer Centre – Liverpool (CCC-Liverpool) and Clatterbridge Cancer Centre – Aintree (CCC-Aintree)
  • Outpatient chemotherapy in CCC-Liverpool and the Marina Dalglish Centre (Aintree)
  • Inpatient care on Ward 4 and Ward 5 at CCC-Liverpool 
  • Blood cancer services to all acute hospitals in Liverpool 
  • Regional support to haematology teams in Merseyside, Cheshire and North Wales
  • Outreach services to the Isle of Man
  • Clinical trials are delivered at Clatterbridge Cancer Centre – Liverpool 

Our team is made up of the following members:

  • Consultants 
  • Specialist Registrar 
  • Advanced Nurse Practitioner
  • Clinical Nurse Specialists 
  • Research Nurses
  • Pharmacist 
  • Ward nurses

Consultants 

Dr Muhammad Saif – Stem Cell Transplant Director and Service Lead 
Dr Gabe Toth (Leukaemia and transplant physician / leukaemia lead)
Dr Tom Seddon (Leukaemia and transplant physician)
Dr Shahid Iqbal (Locum consultant, Leukaemia and transplant physician) 
Dr Tomasz Szczepaniak (Locum consultant in myeloid diseases)

Nursing

Advanced Nurse Practitioner
Janine Collins

Myeloid Clinical Nurse Specialists (CNS)
Aoife Brennan
Faye Finneran
Julie Curran (based in Aintree)

Research Nurses
Elizabeth Dale
Sarah Watmough

Other team members

Senior Pharmacist

The senior pharmacists ensure that any treatment or chemotherapy you receive is prescribed and administered correctly. Our senior pharmacists are Jennifer Gibson, Niamh McLaughlin, Daniel Coca-Peinado and Sophie Hughes.

Patient Counsellor and Clinical Psychologists

Linda Boyne is the counsellor for patients with blood cancer. 

There is a team of clinical psychologists who can offer more advanced psychological support. One of the team will suggest this to you if they feel it is in your best interests. You might then be referred to the psychology specialist team.

Further information

Our Cancer Information and Support Centres can provide individualised help and support for patients and families affected by cancer. The team’s main base is in Clatterbridge Cancer Centre – Liverpool but we also have outpatient service in Aintree Hospital.

There are also local Macmillan services in other hospitals across our region.

External sites that offer extra support and information about different types of blood cancer include: