For Patients

When symptoms are observed and medical advice is sought, there will be a period for you and your doctor to figure out the best treatment methods for you. Many investigations will be required such as blood tests, bone marrow tests, X-rays, MRI etc.

It is possible you might be diagnosed in a low-risk stage or asymptomatic, and that means no treatment is required. A doctor will observe and monitor your symptoms closely.

When your blood cell counts reduce and are not able to support physiological demand, treatments will start. You may routinely require blood transfusions (red blood cells and platelets) to keep you comfortable and avoid bleeding.

Blood transfusion is one of essential components of supportive care for most patients with bone marrow failure syndromes. When bone marrow is dysfunctional and unable to produce healthy cells, blood products (including red blood cells, platelets and plasma) transfusion will be required on the regular basis. Before transfusions are started, your medical team will explain clearly what side effects are commonly experienced. It is also important to try and remember:

• Your blood group types (ABO and Rhesus),
• What possible reactions you are looking for or what symptoms you have had before; such as fever, shivering, itching, rashes, pain, blood pressure changes, breathing difficulties or low urine output.
• What you might normally do to relieve those symptoms, for example, slow down transfusion time, taking an antihistamine 30 -60 minutes prior transfusion, etc.

In addition, frequent red blood cell transfusion might cause iron accumulation in organs like the heart, liver, spleen and others. Once iron overloaded, it will cause damages to those organs. Hence it is common to be prescribed an iron chelating medication.

White blood cells and in particular neutrophils, are the defence soldiers of our immune system, ensuring our immune system is able to adequately fight infections. If the immune system is compromised by low white cell counts, life threatening infections may occur. It is vital any symptoms of infection are recognised immediately, and appropriate antibiotics / antiviral / antifungal medications are received

To prevent infections, it is important to apply some common sense like:

• Strict brushing teeth twice a day, daily shower to maintain healthy mucosa and intact skin barrier
• Performing good/correct hand hygiene to minimise transferring microorganisms.
• Protective isolation, avoiding contact with anyone who has any type of infective symptom, including not go to over-crowded places like shopping centres or markets, avoiding public transportation etc.

In order to administer intravenous medications, a Central Venous Access Device (CVADs) is likely to be inserted when treatment starts. It may be confronting to adjust to having a central line for a long period of time. Please talk to your medical team about any concerns.

Fatigue is one of the most common symptoms associated with Bone Marrow Failure Syndromes. Extreme tiredness, feeling weak, exhaustion, inability to do daily tasks and trouble concentrating are often reported. It occurs in almost every patient, no matter how young or old you are.

You may still feel fatigued even after long periods of sleep and rest. For some, it is challenging to manage and may lead to unwanted frustration. Please do not hesitate to talk to your medical team and seek extra support in fatigue management.

Tips recommended to manage fatigue:

• Consulting a physiotherapist about what are safest and most appropriate activities for you to conduct.
• Regular exercise. Even only 10 – 15 minutes a day of light exercise can help.
• Regular relaxation / meditation.
• Allowing breaks in-between activities.

Nutrition is a very important component of supportive care during and post treatment. Taste alteration (strong/heavier flavours preferred) and loss of appetite are common. It is even more complicated if there are associated gastro-intestinal issues, such as malabsorption or diarrhoea. Additional assistance and recommendations from a qualified nutritionist and dietitian are often necessary.

Maintaining a healthy diet and eating style may enhance energy levels and improve speed of recovery.

Similarly, exercise is an equally important component of supportive care during and post treatment. If able, prescribed exercise may enhance the effect of treatment, minimise side effects such as fatigue and improve quality of life. If exercise capacity is extremely restricted, which it may be at certain times during your treatment and recovery, gentle stretching and mobility may be useful.

Please consult your medical team to understand the safest and appropriate exercise plans for you.

The following organisations can provide information and support for Bone Marrow Failure Syndrome patients that are school age.

Camp Quality

Challenge – Scholarships and Trusts

Leukaemia Foundation – Information and Education Support

Koala Kids

Ronald McDonald – Learning Program

The following organisations may be able to provide financial support and information.

Arrow – The Bone Marrow Transplant Foundation

Challenge

Carers Australia

Carers Gateway – Information about support options for carers

Leukaemia Foundation Practical Supports

My Room Children’s Cancer Charity

The following websites can help you find counselling services or supports:

Australia Psychology Society – Find a Psychologist

Beyond Blue