New support for people with blood or bone marrow cancer

Thursday 16 October, 2008

New support for people diagnosed with blood or bone marrow cancer will be launched today at the Cancer Council Victoria.

The service expands Cancer Connect, a Cancer Council telephone support program which enables people to speak to a trained volunteer who has been through a similar experience.

The new support for blood or bone marrow cancer patients has been developed in partnership with the Leukaemia Foundation, Bone Marrow Donor Institute and Myeloma Foundation of Australia.

Cancer Council Helpline Director, Doreen Akkerman AM said this new service would enable more specialised support for people diagnosed with this disease.

"The expansion of Cancer Connect to include telephone support for people with blood or bone marrow cancer with greatly benefit the psychological well-being of blood disorder and bone marrow cancer patients," Ms Akkerman said.

"Offering specialised support from someone who understands the experience can help people feel less isolated and better able to adjust to their situation."

Leukaemia Foundation General Manager, Stephanie Hechenberger said blood cancer patients and bone marrow transplant recipients had a unique set of support needs.

"Patients are coping with intensive and lengthy treatment regimes as well as complex side effects," Ms Hechenberger said.

"Having access to ongoing peer support will be of immeasurable value to people diagnosed with blood cancer and bone marrow transplant recipients."

Ms Akkerman also announced today that the Cancer Connect telephone support program would expand to include support for cancer survivors.

"Research, better treatments and early detection programs have seen cancer survival rates rise in recent years so the need for individualised support is greater than ever," Ms Akkerman said.

"Cancer Connect has been in operation at the Cancer Council for 8 years and is a service that has put almost 5000 people affected by cancer in touch with someone who has been through a similar experience."

Ms Akkerman encourages patients in need of support to speak to a Cancer Connect volunteer.

"The overwhelming response we hear from people is ‘my volunteer made me feel I wasn't alone'", Ms Akkerman said.

"Call 13 11 20 to speak to a Cancer Connect volunteer today."


What: Launch: New support for people with blood or bone marrow cancer
When: Friday October 17, 12.00pm-2pm
Where: 100 Drummond Street, Carlton

Guest speakers:
Phil Kerslake, author and blood disorder survivor
Professor David Hill AM, Director, Cancer Council Victoria 
Doreen Akkerman AM, Cancer Council Victoria
Samantha Schembri, Leukaemia Foundation.

 

Q&A

Q1. What are blood cancers and blood disorders?

Blood cancers originate in bone marrow. These include:

  • Leukaemia - cancer affecting the blood and bone marrow (acute leukaemia, chronic leukaemia, myeloid leukaemia, lymphoid leukaemia)
  • Lymphomas - cancers of the lymphatic system (Hodgkin lymphoma, Non-Hodgkin lymphomas)
  • Myeloma - cancer of plasma cells

Blood disorders are non-cancer related and include:

Myelodysplastic syndromes (MDS) - affects normal blood cell production in the bone marrow

Myeloproliferative disorders - affect normal blood cell production in the bone marrow

Aplastic anaemia - bone marrow fails to produce enough blood cells.

Amyloidosis - causes build up of protein in blood, which transfers and accumulates in organs and tissues around body. Disrupts normal function, eventually leading to organ failure.

 

Q2. What is the difference between a blood cancer and a blood disorders?

Blood disorders are non-cancerous but can require frequent supportive treatment including blood transfusions.

 

Q3. What causes blood cancers?

  • The cause of these cancers and related blood disorders remains relatively unknown.
  • There are certain factors that may put some people at a higher risk of developing these diseases. These include exposure to high doses of radiation and ongoing exposure to certain industrial or environmental chemicals.
  • In leukaemia, factors may include a person's genetic history, exposure to intense radiation and certain chemicals including benzene and viruses like the Human T-Cell Leukaemia virus.

Q4. What are the symptoms of blood cancers and blood disorders?

Sometimes no symptoms and are often evident at the time of blood tests.

Blood cancers:

  • Leukaemia - fatigue, more susceptible to infections, bleeding and bruising more easily.
  • Lymphomas - recurrent fevers, excessive sweating at night, weight loss, lack of energy, itching
  • Myeloma - bone pain, tiredness, fatigue.

Blood disorders:

  • MDS - tiredness, fatigue, shortness of breath, frequent infections, bleeding and bruising more easily.
  • Myeloproliferative disorders - enlarged spleen, feelings of discomfort, pain or fullness in abdomen, blood clotting, bleeding and bruising more easily.
  • Aplastic anaemia - bleeding and bruising more easily.
  • Amyloidosis - fatigue, unexplained weight loss, fluid retention in lower limbs, shortness of breath, loss of appetite.

 

Q5. How are blood cancers and blood disorder treated?

  • These diseases often develop with little warning, requiring immediate and intensive treatment. Patients with acute leukaemia typically begin treatment within 24 hours of diagnosis.
  • On average, treatment lasts for eight months but can last for years (treatment for Acute Lymphoblastic Leukaemia will be at least two years).
  • The type of treatment depends on the stage of the disease at diagnosis, the person's age and their general health.
  • Treatments can include chemotheraphy, radiotherapy, immunotherapies, bone marrow or stem cell transplantation or a combination of these.

 

Q6. How many people are diagnosed with blood cancers and blood disorders each year?

9,509 in Australia, 2612 in Victoria.

 

Q7: What is Cancer Connect?

Cancer Connect is a free and confidential telephone support program that links people affected by cancer to a specially trained volunteer who has been through a similar cancer experience.

 

Q8. How can talking to a Cancer Connect volunteer help?

Research tells us that speaking to a Cancer Connect volunteer can reduce feelings of isolation and help people adjust to their cancer experience.

Rather than just sympathising with the caller, our volunteers can empathise with them as they too have been through the physical and emotional roller coaster of cancer.

 

Q9. Where can I find out more about the Cancer Connect program?

Call the Cancer Council Helpline on 13 11 20 or visit www.cancervic.org.au/cancer_connect