About myelodysplastic syndrome (MDS)

By Margo White In Health

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18th January, 2013 Leave a Comment
MDS - damaged blood vessels

People with MDS are more susceptible to infection and can bleed and bruise easily. Photo Getty Images

It is one of the least recognised cancers that can afflict us, possibly because of its troublesome name – myelodysplasia, or myelodysplastic syndrome (MDS), which literally translates as “marrow-odd-growth”. “One of my patients referred to it as ‘wheelbarrow syndrome’, because he couldn’t remember or pronounce it,” says Ian Morison, head of the Department of Pathology at the University of Otago’s Dunedin School of Medicine.

Morison, with colleague Euan Rodger, recently published the first paper on the epidemiology of MDS in Australia and New Zealand in the Internal Medicine Journal. He says that although this may be a disease most of aren’t familiar with, it’s certainly not uncommon. “It is as common as any of the other blood disorders that we deal with.”

Another reason for the disorder’s low-profile could be that it is sometimes difficult to diagnose, difficult to define and difficult to explain, and the disease most commonly affects elderly people. As he and Rodger found, the median age for people diagnosed with MDS is 77 in New Zealand – and it rarely affects people under 60. “But now that we’ve got this ageing population, we’re seeing a lot more of it.”

MDS is a disease (some define it as a group of diseases) in which the bone marrow produces blood cells that are deformed and don’t function normally. Without the normal number of functioning red blood cells, white blood cells and platelets, people become fatigued, are more susceptible to infection and can bleed and bruise easily. But this affects people to varying degrees; those with a mild form might suffer few symptoms. In the more severe subtypes, about 20-30% progress to acute myeloid leukaemia.

MDS was defined by the World Health Organisation as a cancer only a decade ago and has been included in the New Zealand Cancer registry only since 2003. However, opinions are split as to whether it’s best to tell patients that’s what they have. “To some extent, it depends whether the patient has an aggressive form or not,” says clinical haematologist Hilary Blacklock. “Some of the cells will stay there for years and don’t tend to multiply or spread like a cancer, whereas in those who are progressing to leukaemia, it is clearly in a cancerous mode.”

Although MDS is age-related, in most people there’s no apparent cause. Some cases (estimated at about 10%) are caused by cancer-treatments – namely, chemotherapy and radiotherapy. It has also been linked to chemical exposure, such as benzene from occupational exposure or smoking. As Morison and Rodger have found, New Zealand men are twice as likely to get it as women, although nobody knows why.

The only curative treatment for the disease is a bone marrow transplant, but this is viable only in healthy people under 65, as the risk involved for those who are older outweighs the benefits. For everyone else, treatment usually involves blood transfusions, monitoring and support. “It’s a bit of a Cinderella condition,” says Blacklock. “Unless the patient is eligible for transplant, we don’t have anything curative. So we tell people you’ve got MDS, you may be at risk of bleeding, of infection, you may need transfusions and we will monitor the condition and actively support you.”

Leukaemia & Blood Cancer NZ chief executive Pru Etcheverry says New Zealand MDS patients are poorly served. “There are treatment options funded in many countries that are not currently available here.”

Blacklock agrees. She and fellow haematologists have made a submission to Pharmac for the funding of erythropoietin for some forms of MDS. This is a hormone the body produces to control red blood cell production; it’s commonly known as EPO and most notoriously associated with Lance Armstrong. As a pharmacological agent, it is funded in New Zealand to treat people with renal failure. But Blacklock says the drug should be trialled on those who are dependent on transfusions and who have low-risk subtypes of MDS that are more likely to respond.

The agent azacitidine has also been shown to improve people’s blood counts, reduce the need for transfusions and raise people’s quality of life. “Again, not everybody responds, but those patients who are healthy and active deserve a trial.”

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18th January, 2013 Leave a Comment

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