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'hardest thing is the uncertainty' Bone marrow cancer mum thought she had arthritis.

Byline: Liz Day Reporter

When trainee teaching assistant Deb Richardson was diagnosed with bone marrow cancer out of the blue, her first question was: "How long have I got?" The 48-year-old from Pontypool was told that although the outlook for multiple myeloma is improving all the time, the condition still cannot be completely cured.

"The hardest thing about myeloma is the uncertainty," said Deb. "Some people live for less than a year, others live for 20 years or more - it's impossible to know."

Multiple myeloma is a kind of bone marrow cancer that affects a type of blood cell inside the bone marrow.

It does not usually take the form of a tumour, but instead the my e l o m a cells divide within the m a r r o w , dama g i n g the bones and affecting the production of healthy blood cells.

Deb had noticed a persistent dull ache in her bones for several years and assumed she had arthritis before visiting the doctor.

She was sent for blood tests and referred to Nevill Hall H o s p i t a l , where she was diagnosed with multiple myeloma in 2012. "It was a huge shock," she said. "I thought it was arthritis and then I was told I had cancer."

Deb and her h u s b a n d Charles had to break the news to sons Tony, 32, David, 30, Connor, 18 and Cynan, 10.

Deb with her husband When she received the diagnosis, Deb was at college training to be a teaching assistant.

She managed to complete her course, but then decided to set up her own business so she could work more flexible hours.

"I was struggling to stand up for long periods and the tiredness was affecting me," she said.

Multiple myeloma patients are often affected by anaemia - a lack of red blood cells - which leads to tiredness, weakness and breathlessness.

Deb now runs her own company called Purely Disposables, which sells compostable cups and lids.

She has infusions of a drug called Zometa every other month, aiming to reduce the risk of bone fractures.

Deb says she currently suffers from pain in her bones, particularly her back, ribs and hips.

She has smouldering myeloma, an early form of the condition, which usually progresses to active myeloma, but at a slow rate.

In the early stages, myeloma may not cause any symptoms, but will eventually cause problems including bone pain and fractures, anaemia and kidney problems.

She added: "I just try to keep it to the back of my mind. You have up days and down days, but as far as I see it, if you wallow in self-pity, you've let it win."

According to figures from Cancer Research UK, multiple myeloma affects about 300 people in Wales each year and research is ongoing to try to find new treatments.

This week, a new treatment approach was recommended by the All Wales Medicine Strategy Group.

The recommendation for Revlimid in combination with a low dose of dexamethasone is for patients who are not eligible for transplant and not able to take thalidomide.

This treatment approach was approved for use within NHS Scotland in December 2015 and Northern Ireland in April 2016. It will now be available through the NHS for patients in Wales.

Dr Ceri Bygrave, consultant haematologist at the University Hospital of Wales, described the condition as "deadly".

She said: "This recommendation brings an important additional option to Welsh patients who have just received diagnosis of a largely incurable disease.

"It exemplifies the determination of the Welsh Government in ensuring access to vital cancer medicines."

The new treatment comes in tablet form, allowing patients to be treated in their own homes, rather than having to go to hospital for intravenous infusions.

Myeloma UK policy and public affairs manager Kate Morgan said the new approach will provide a "muchneeded treatment option".


Deb Richardson, from Pontypool, was diagnosed with multiple myeloma in November 2012
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Publication:Wales On Sunday (Cardiff, Wales)
Date:Jul 31, 2016
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