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Health

Tracking the hidden cancer

It is one of the most common blood cancers in the UK, yet few people have heard of multiple myeloma, writes Judy Hobson, and that has to change

Fifteen people are diagnosed every day in the UK with multiple myeloma. In two months, three of them will be dead.

A major problem is that this particular type of cancer, which causes bones to disintegrate, leads to kidney problems and impairs the immune system, has the longest route of all cancers to diagnosis, according to a 2016 National Cancer Patient Experience survey.

“If I’d been diagnosed earlier, it would have saved me an awful lot of pain”

 

Dr Fenella Willis, consultant haematologist at St George’s Hospital, London, says: “A fifth of patients see their GP five to six times before they are diagnosed, by which time their disease will have got worse and more than 30 per cent are diagnosed as a result of emergency admission to hospital.”

Dr Willis adds: “The patient will have often broken a leg or an arm because their bones have become so weak and be complaining of aches and pains. By the time some get their diagnosis, they are horribly disabled. We want patients to be picked up much earlier so they don’t end up having to live with bone deformity.”

Multiple myeloma is a cancer of the plasma cells, a type of white blood cell that is made in the bone marrow, the spongy material found in the larger bones of the body.

Normal plasma cells produce antibodies that fight infection, but in multiple myeloma they become abnormal, multiply and release a type of antibody called a paraprotein which has no useful function.

Measuring paraprotein in the blood and urine is a method used to diagnose and monitor this cancer.

At present there is no cure, but following treatment with steroids, a combination of chemotherapy drugs and stem cell transplants, a third of patients are living with the disease for ten years or longer.

But they report feeling as though they have a bomb inside them because they never know when their remission is going to end and they will have to undergo further treatment

Rosemarie Finley, CEO of Myeloma UK and a former nurse, says: “Sadly multiple myeloma has not been given the attention it deserves. Incidence increases with age. With our ageing population, the UK is going to see a lot more multiple myeloma and health care professionals and the public need to know exactly what it is and stop confusing it with melanoma.”

“One problem,” Dr Willis points out, “is that a GP may only see a case once every three to five years. And some symptoms such as backache and fatigue are generic. But having pain in your bones is very different from muscle pain. Simple blood tests carried out in a doctor’s surgery can detect whether there is high calcium content in someone’s blood that indicates bones are breaking down while proteins in their urine can indicate kidney damage.”

To raise the cancer’s profile and alert doctors to its symptoms the charity has produced a five-minute module now being shown on the Royal College of GPs website.

The charity, which celebrates its 21st anniversary this year, has also set up 100 groups across the country to help patients and families cope with the emotional turmoil a diagnosis of multiple myeloma brings.

Dr Willis says: “If someone has at least two of these symptoms – unexplained anaemia, kidney problems, nausea, weight loss, constipation, high blood calcium levels, fatigue and bone pain – it should alert their doctor to the possibility the patient has multiple myeloma.”

Phil Kelly, 53, from Oxford, was 41 when he was diagnosed with multiple myeloma as a result of hospital admission. Thanks to two stem cell transplants, steroids and different chemotherapy drugs, the married father of two is still alive 12 years later.

He says: “Hearing my diagnosis was like being hit by a car and for three to four years I was in denial. My wife Julie, an ergonomic physiotherapist at the John Radcliffe Hospital, has been my rock.”

Phil was working as a senior medical education manager when he was diagnosed. He attributed his lower back pain and extreme tiredness to overwork, his 45-mile commute to his office in Maidenhead and spending a lot of time in planes.

What he didn’t know was that as a result of his cancer the vertebrae in his lower back had collapsed.

“I’d had pain in my lower back for more than a year and at the start of 2006 the pain got really intense. Over the counter painkillers made no difference and in the end I had to stay in bed.

“Julie kept ringing the surgery and they just prescribed stronger and stronger painkillers. One night Dan, our four-yearold son, crept into our bed. When I picked him up I felt something in my back give and then on my way to the loo I fell and had no sensation in my right leg.”

An MRI scan revealed an area in the middle of his spinal cord had turned to “mush”. The following day he underwent back surgery. The broken bone was scooped out and a metal cage put in to support his spine.

“Hearing my diagnosis was like being hit by a car”

 

Bone marrow was extracted from Phil’s hipbone and a subsequent biopsy revealed he had multiple myeloma.

He recalls: “We were given the devastating news that I had multiple myeloma and had only two to three years to live. When you’ve a young family it is difficult news to take in.”

Over the next three months Phil had three cycles of CVAD chemotherapy, a combination of Cytoxan, Vincristine, Adriamycin and Dexamethasone, followed by a stem cell transplant. He then went into remission for four years before having to undergo more chemotherapy and a second stem cell transplant in 2011.

After the first transplant, which took Phil eight months to recover from, he had wanted to return to work full-time, but because of overwhelming fatigue he could only manage a two-day week. After the second, he felt the drugs he had taken had affected his brain so he had to give up the job he loved.

“Today I watch a lot of TV and help with the cooking and shopping which I can do in my own time. The only bonus is that I’ve been able to spend much more time with my children. When I was working I was always jetting off somewhere.”

Phil, a bass guitarist, has also got his old band from his Aston University days – The Trophy Cabinet – back together.

“We’re putting our old recordings together and bringing out an album. Getting the band back together has been a major part of my psychological rehabilitation.

“The truth is I suffered an identity crisis. Eventually a counsellor explained I had post traumatic stress disorder as a result of the shock of my diagnosis.”

Looking back, he realises that pneumonia in his 30s, prolonged bleeding after dental work and then suffering from numerous colds and minor illnesses were an early indication his immune system was impaired.

He says: “Doctors should be looking out for symptoms like this and linking them together. If I’d been diagnosed earlier, it would have saved me an awful lot of pain and my bones wouldn’t have disintegrated to such an extent that I needed dramatic back surgery.

“If you experience any symptoms, don’t be shy, ask what blood tests can be done. No one ever tested my haemoglobin and that would have picked up my multiple myeloma much earlier.”

Phil is now on the oral cancer drug Revlimid, a derivative of thalidomide, and still in remission

For more information on multiple myeloma go to: (www.myeloma.org.uk) or tel: 0800 9803332.

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