Who will look after me in hospital?
You will be referred to a specialist doctor (consultant) and multidisciplinary team at your hospital who will work together to provide the best care possible for you.
The people who you will come into contact with are:

• Your consultant who coordinates your care – a specialist doctor
• Other doctors who assist your consultant  (resident, registrar, fellow)
• A therapeutic radiographer if you have radiotherapy
• A nurse who heads up a team of nurses
• Other specialised nurses possibly including a clinical nurse specialist who deals with one specific aspect of your care

Sometimes different aspects of your treatment can take place in different hospitals. This is called ‘shared care’ and it means most of the time you can just go to your local hospital.

If you are a teenager, one important aspect of your care that may well vary between treatment centres is whether you are considered to be an ‘old child’ or a ‘young adult’. Specialist wards for young people are not normal in Australia but are being considered or planned for some Australian treatment centres. You should certainly ask your consultant about this and what you can do to make your surroundings cheerful and encouraging.

What happens after my initial diagnosis?
Waiting for your treatment to begin can be a very frustrating time.  Sometimes more tests have to be done to help your doctors decide what will be the best treatment for you. These tests will include a bone marrow biopsy, possibly for chromosome analysis. Other tests may include body imaging scans for staging lymphoma and a lumbar puncture.

How is my blood cancer treated?
You might have chemotherapy, radiotherapy or a combination of both. Some people also have a stem cell transplant. None of these are what you would call a pleasant experience but they are the best treatments available.

Every blood cancer patient is different; the exact treatment you receive, the length of your treatment and how it is administered is unique to you.
 
How does radiotherapy work?
Radiotherapy uses very high energy X-rays which are focused on tumours to kill the cancerous cells. This type of treatment is used quite commonly for lymphoma as the focusing of the beams on the tumour reduces the amount of radiation that passes through normal healthy cells. It is not used very often in leukaemia treatment because the cancer cells are spread throughout the body. This means that in order to kill them, high levels of radiation would be given to all healthy tissues as well.

The only time when the whole body may need to be treated with radiotherapy is prior to a stem cell transplant. This is called total body irradiation and you may hear doctors calling it TBI.

How does chemotherapy work?
Chemotherapy is the use of anti-cancer drugs to kill cancer cells. There are many different drugs but most work by killing any cells that are growing and dividing. The drugs you receive will depend on your type of cancer along with many other factors, including: 

• Stage of your disease
• Age at diagnosis 
• Genetic changes in cancer cells
• Gender - males may have longer treatments for some leukaemias 
• Any other existing medical conditions

The drugs are usually given in combination to improve their effectiveness and reduce the chance that your cancer cells will become resistant to them.
Some drugs can be taken orally while some must be given intravenously (into a vein). Many people have a central line put in to avoid having numerous intravenous injections. You can talk to your doctor about where your line will go to make it as discreet as possible.

It is very important that you follow ‘doctor’s orders’ and take the cocktail of drugs for as long as you have been told to. For some patients this can be a long time but it gives you the best chance of fighting your cancer.

What is central nervous system directed therapy?
A particular problem in acute leukaemia (especially acute lymphoblastic leukaemia) is that cancerous cells can ‘hide’ in the fluid in the central nervous system (CNS). Many chemotherapy drugs cannot reach these cells so they can remain there leading to a risk of the disease relapsing.

Quite often, specific therapy is given to kill these small number of cells (that may not have been detectable in the CNS fluid) as a measure to prevent relapse. Unfortunately, not much of the chemotherapy given intravenously or orally can penetrate the CNS to target these ‘hiding’ cells so treatment also involves administration of drugs directly into the fluid surrounding the spine.

Some patients also receive cranial irradiation (radiotherapy to the head) although this is becoming less common. In this procedure, X-rays are used to kill the hiding leukaemia cells. If you have radiotherapy you may well get a condition called somnolence. This is characterised by nausea, depression, lethargy and drowsiness. It occurs during and after treatment and may get worse about four to six weeks after completion of treatment, but don’t worry as this side effect resolves itself within a few weeks.

What happens if I need a stem cell transplant?
If your blood cancer proves difficult to cure using chemotherapy you will need to consider having a stem cell transplant. You will be able to ask your care team as many questions as you like - they know how difficult it can be to make this decision.

But here’s the good news; as a young person you are in the group of adults best prepared to cope with a stem cell transplant. Stem cells are the primitive blood forming cells in the bone marrow. Sometimes these cells are collected from bone marrow; this is called a bone marrow transplant. Now it is more usual to stimulate stem cell release into the blood and harvest them from there; this is a peripheral blood stem cell transplant.

Allogeneic transplants are better at eliminating leukaemia but carry an additional risk of a condition called Graft versus Host Disease (GvHD).  These risks may be higher in those who receive transplants from an unrelated donor. GvHD isn’t all bad news; a little can be a good thing.  This is because it comes hand in hand with the Graft versus Leukaemia (GvL) effect. This is where the donor cells attack any leukaemia cells that have survived the intensive treatment with chemotherapy and radiotherapy. This gives you an even better chance of beating blood cancer.

What are new therapies?
There has been a lot of progress in the treatment of blood cancers that make cure more likely and side effects milder. New drugs are being developed all the time although many do not turn out to be better than existing treatments. Your consultant or one of their colleagues will be aware of what new treatments are available and you should feel free to ask about your options.

Biological agents are relatively new treatments. The main ones are antibodies that recognise certain molecules (markers) on the surface of your cells. Different types of cells have different markers so the therapeutic antibodies are designed to specifically recognise and kill your cancer cells, although some cells with a similar make-up will also be targeted. Some of these antibodies have radioactive agents or toxins (special drugs) attached to make them more effective at killing the cells. 

• You may receive a new treatment that might prove to be better than standard treatment (although bear in mind there may not be any difference)
• You are monitored very closely to assess how you respond no matter which treatment you receive

Whatever course of treatment you receive you can be reassured that it is effective against your disease.