Tuesday 23 April 2019

'I got the all clear but then I got blinding headaches' - Man underwent stem cell transplant as doctors were unable to operate

Stem cell treatment had a curative effect for one patient who was battling lymphoma for a second time while still in his 20s, writes Áilín Quinlan

Paul Forde. Picture: Frank McGrath
Paul Forde. Picture: Frank McGrath
Paul Forde. Picture: Frank McGrath

Áilín Quinlan

When Paul Forde fell out of bed at three in the morning, knocking over furniture and waking his sleeping parents, he had no idea that it was a red flag for cancer.

Recently graduated from NUI Galway, the 22-year-old had just landed his first job as a structural engineer and was living in the family home in Loughrea.

Paul was fast asleep when he tumbled, toppling the locker beside him, on September 12, 2007.

Woken by the thump, his parents hurried in to see what had happened, and found their son lying on the floor. "They lifted me up and put me back into bed. They told me later that I'd spoken to them, but I don't remember," recalls Paul.

The next morning he rose as usual, had his shower and was about to leave for work when his mother, still concerned about his fall, said he should go to see the doctor.

Paul replied that he'd no memory of the fall, and was anxious to get to work. "I just said that I had a busy day ahead. I wanted to get to work," he says.

However, his mother was insistent, so he eventually agreed and went with her to see the family GP.

This, as it later emerged, was the first step in a long and difficult journey back to full health, one which was to last for several years. The doctor's response on hearing their story was to send Paul straight to hospital.

"I had an MRI scan and as soon as they saw the result, they knew there was something wrong. I was admitted to hospital immediately," says Paul.

He was later transferred to Beaumont Hospital in Dublin for a craniotomy, an operation which involves the removal of part of the skull in order to take out the tumour, on October 20.

Doctors explained that Paul had non-Hodgkin's lymphoma.

A lymphoma is a cancer of the lymphatic system and there are two types: Hodgkin's and non-Hodgkin's lymphoma. The difference depends on the appearance of the lymphoma cells under the microscope. Non-Hodgkin's lymphomas are the most common, affecting both men and women - and it's estimated that more than 800 people are diagnosed with it in Ireland each year.

"They removed as much of the tumour as they could, and a biopsy was carried out. It transpired that the tumour was malignant," recalls Paul now.

The young man returned to Galway to see his consultant and begin a lengthy course of radiation therapy and chemotherapy.

The treatments lasted through November 2007 and into the spring of 2008, after which tests showed the lymphoma had disappeared.

"I had check-ups every three months for about a year, and then I got the all clear."

He returned to work in April 2008, and later went back to college to earn a PhD in engineering.

However, about 18 months later, in November 2009, Paul started to experience blinding headaches. "They worsened over the next three or four days," he says.

Concerned, he returned to hospital for another MRI scan. Then came the bad news - test results revealed the lymphoma was back.

"At that point I was 23 or 24. I'd already gone through this and I'd hoped I was done with it. I was shocked to find that it had come back."

Paul was admitted to hospital, but, because of its location in his brain, doctors were unable to operate. "It was decided that the best course of treatment was a stem cell transplant," Paul says.

Stem cell transplants are used predominantly for conditions such as lymphomas, leukaemia and multiple myeloma; they are rarely used for other types of cancer apart from germ cell tumours, explains Dr Eibhlin Conneally, a consultant haematologist with an interest in stem cell transplantation, acute leukaemia and myeloproliferative disorders at St James's Hospital, Dublin.

Founded in 1984, the Stem Cell Transplantation (SCT) service at St James's has performed more than 1,000 stem cell and bone marrow transplants. The service oversees transplants in about 160 patients each year, and is the third largest SCT unit in Britain and Ireland.

Depending on their diagnosis, Dr Conneally adds, patients are considered for a transplant on an individual basis, following a referral from their oncologist.

Stem cell transplants are a type of infusion, similar to a blood infusion, explains Professor Seamus O'Reilly, a consultant oncologist at Cork University Hospital.

"Patients are referred for this treatment after their initial treatment has not worked," he explains.

Sources of stem cells include bone marrow and peripheral blood - that is, blood circulating throughout the body. In stem cell transplantation, healthy stem cells are either transplanted from one individual to another or the individual's own stem cells are used. In Paul's case, the stem cells he received were sourced from donor blood.

Although the technology is well-established - it has been in place for more than two decades - Professor O'Reilly says the service is only available in certain Irish hospitals, because the medical, nursing and laboratory expertise required is so highly specialised. As well as St James's, University Hospital Galway and St Vincent's Hospital in Dublin, provide the service.

"This type of treatment has to be limited to certain specialist centres," says Professor O'Reilly, adding that it is the "established standard of care for these lymphomas."

Paul was kept in hospital and given very high doses of chemotherapy over a period of nine weeks. "I received an infusion of stem cells over a four-day period," he recalls, adding that he was later monitored for a number of weeks before being discharged in early 2010.

"After regular check-ups, which went on for around a year, I was given the all-clear, but I was warned that if I felt anything was wrong, I was to go back to hospital again."

The outcome of this kind of treatment much depends on the patient, and on their previous treatment, says Dr Conneally, who observes, however, that it can be "curative".

However, because it requires high doses of chemotherapy, the patient's immune system becomes depressed.

"There is a mortality associated with the procedure and the lymphoma can still come back," Professor O'Reilly says. He emphasises the treatment is not carried out unless the patient is deemed otherwise strong and healthy.

"There are strict health checks and medical vetting required before patients are treated in this way. Some patients would not be able to receive stem cell therapy because of other medical conditions."

Now aged 33 and working as a financial analyst in Dublin, Paul, who has always enjoyed a physically active lifestyle, has had no problems since the transplant. "I'm optimistic it won't recur. It was a very challenging time for my family and I really appreciated their support over all of that time," he says.

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