Living with myeloma for almost three decades: Dorothy's story

Posted 24th April 2023

Picture of Dorothy who has grey hair in a short bob and is wearing glasses and smiling

A Liverpool woman who was diagnosed with an incurable form of blood cancer almost three decades ago has shared her story to raise awareness of myeloma.

Dorothy Williams (pictured), now 68, had never heard of multiple myeloma when she was first diagnosed in 1996 after experiencing two years of health problems including Bells Palsy, a suspected mini-stroke and a series of chronic infections that never seemed to go away.

“When the consultant told me I thought, ‘Well, that’s okay. I’ll have some antibiotics and that will be that.’ Then he explained it was a type of blood cancer,” retired headteacher Dorothy remembers.

Myeloma is a cancer affecting plasma cells in the bone marrow and it is often described as a ‘relapsing-remitting’ disease. People can go into remission for many years before relapsing. Although there is no cure yet, there are effective treatments that can send it into remission so people may live well with myeloma.

Symptoms can be vague but may include bone pain or fractures, frequent infections, tiredness and problems due to pressure on the spinal cord. Like Dorothy, many people have often had a series of unexplained health problems and many different tests before they get diagnosed.

When a new GP in Dorothy’s practice referred her for a specialist blood test, it showed she had raised levels of protein in her blood due to a paraprotein – an abnormal antibody produced by plasma cells that can sometimes be due to myeloma.

Dorothy’s paraprotein levels weren’t so high, however, that she needed chemotherapy immediately. “The consultant said the myeloma wasn’t overly active and I didn’t need treatment yet but I should have monthly blood tests and x-rays to monitor it. I remember he said to me, ‘We’ll get through this together’,” she says.

Life carried on and Dorothy had blood tests every month while balancing a busy career as a primary school headteacher and a busy home life with her husband and three children. In fact, it wasn’t until 2002 that her myeloma got to the point where she needed to begin treatment.

“Then the doctor said my blood tests and a bone marrow aspirate showed the paraproteins had increased and I needed chemo straight away. I said, ‘When?’ and he said, ‘Next Thursday’. I wasn’t expecting it at all because I’d had no symptoms.”

There were very few treatments back then and Dorothy was offered the option of joining a clinical trial where she would have thalidomide as well as her chemotherapy. “I didn’t want to take it at first,” she says, “but they explained that thalidomide affects the endings of blood vessels and that in myeloma they thought this may help stop the cancer cells so I agreed to the trial.

“The chemotherapy back then was different from now. I had a PICC line (a special catheter) with a pump attached. I had to wear it for four days and it constantly pumped two chemotherapy drugs into me plus dexamethasone. After the four days, I had a week off and then I’d do it again and I did that for six months as well as taking thalidomide tablets and other covering medications.”

Once Dorothy was feeling strong enough, the next phase of her treatment was a very high dose of chemotherapy to kill any faulty plasma cells followed by a stem cell transplant to replace healthy cells damaged by the chemo.

Dorothy’s own stem cells were used in the transplant. They were harvested before the high-dose chemotherapy in a procedure a bit like giving blood. “The blood is taken out of one arm and stem cells are removed and taken away to process them for the transplant, and the rest of your blood is returned into your other arm,” says Dorothy.

Although stem cell transplants can give people with some cancers a better chance of going into remission, they are also very intensive and there are risks. People usually need to stay in an isolation room in hospital for a few weeks because the very high-dose chemotherapy that kills the cancer cells also wipes out the body’s immune system. This leaves them very vulnerable to infection until the transplanted stem cells help their immune system recover.

Dorothy had her stem cell transplant within 48 hours of her high-dose chemotherapy. “After that, it was a waiting game to see if my body would accept the cells. I felt really well the first couple of days but by day three I had horrible side-effects – sickness and diarrhoea that lasted a few days.

“I can’t describe the tiredness – even listening to music was too much of an effort. When I came out of hospital it took a while to regain my strength and get my immunity back. It’s like you’re a newborn baby again with no immune system. It was about three to four months before I began to feel normal. I found it hard to eat. I had no sense of smell or taste and a lot of stomach problems. I lived on rice krispies and tinned mandarins.

“I’d say to anyone having cancer treatment that when you feel like that, it’s best just to graze. Don’t try and force yourself to eat like you did beforehand. Then when your appetite comes back you might find your tastes have changed. I never used to like tomato soup or curry but after treatment I needed the spice.”

Dorothy made a good recovery after her stem cell transplant and went back to work as a headteacher in January 2004. For the next 10 years she was in remission. “By then I was working at Ofsted and just having six-monthly blood tests,” she says. “I used to drive a lot with work and I started getting backache and headaches.

“It didn’t occur to me that the myeloma had come back but in May 2014 my consultant, Dr Hawkins, rang and asked me to come in immediately. My blood tests showed my myeloma was active again and scans confirmed I had what’s called ‘pepper-pot skull’ – lesions in my skull – and a little shadow on the vertebrae in my neck.”

It was time for Dorothy to have a second line of chemotherapy and the plan was that, once again, this would be followed by a stem cell transplant. However a scan after her chemotherapy showed that the cancer had eroded 70 per cent of two of the bones in her neck – there was an extremely high risk that this could damage her spinal cord and potentially leave her paralysed.

Dorothy had to stop work and wear a specially-made neck brace to protect her spinal cord until she could be assessed for pioneering surgery that had never been carried out in Liverpool before. “The only place where they did it back then was Nottingham but my surgeon said he was willing to try it – with assistance from the Nottingham team via a video link – if I was willing to let him. I said ‘yes’.”

In a nine-hour operation in February 2015, the surgical team placed ‘scaffolding’ around the fractured bones in Dorothy’s neck to keep them in position and injected crushed bone to help her body repair the damage. Dorothy was well enough to go home a couple of days later and had her second stem cell transplant that June.

“I didn’t think I could go through that again,” she says, “but the stem cell transplant nurse explained they could give me pain relief and medication to help with the side-effects. She also explained in depth about why they believed a stem cell transplant would give me the best possible chance of a deep remission – one that would keep the myeloma stable for many years – so I went ahead.”

For the next seven years, Dorothy’s myeloma remained stable and didn’t need treatment. Having regular monitoring including scans and blood tests meant that when it became active again and she developed lesions in her hip, she was able to start her third line of chemotherapy straight away in March 2021, even though she hadn’t had many symptoms.

“Having a stem cell transplant is a bit like having a baby,” she says. “It can be horrendous when you’re going through it but afterwards the memory fades. I’ve now been having treatment for so long that I’ve known my current consultant since he was a junior doctor. “The team at The Clatterbridge Cancer Centre have been fantastic and treatments have changed so much over the years. My current chemotherapy comes in tablet form so I can just take it myself at home with monthly blood tests and consultations.

“I’m just like a lot of other people with a chronic disease. Although myeloma isn’t curable, it is treatable; however, because it can reduce immunity it can cause complications. Some people die with myeloma rather than from it. Living with myeloma, you learn to take each day as it comes. My attitude is that I just enjoy the life I have and get on with it. I have a wonderful family – my husband, children and grandchildren give me so much joy and support.

“When I was first diagnosed I worried about every lump and bump or pain – I thought it meant the cancer had spread. You hear the word cancer and think this is the end of your life but treatments have come so far and we hope for a cure in the not-so-distant future and you can live the best life you can. Don’t let myeloma rule your life.”

About myeloma

Myeloma (also known as multiple myeloma) is a blood cancer that affects plasma cells in the bone marrow. There are often no symptoms in the early stages but as it progresses symptoms can include:

  • Persistent bone pain, usually in the back, ribs or hips
  • Tiredness, weakness and shortness of breath
  • High levels of calcium in the blood which can cause symptoms including extreme thirst, stomach pain, needing to pee frequently, constipation or confusion
  • Weight loss
  • Repeated infections (plasma cells are important for a healthy immune system)
  • Weak bones that break easily
  • Bruising and unusual bleeding
  • Kidney problem
  • Symptoms of spinal cord compression such as pins and needles, numbness and weakness in the legs and feet, and problems controlling your bladder and bowels – spinal cord compression needs emergency investigation

Find out more about myeloma care at The Clatterbridge Cancer Centre