EVERY YEAR ALMOST 2,000 people in Ireland are diagnosed with a form of blood cancer.
There are over 140 different types of blood cancers, which can be classified into three main groups – leukaemia, lymphoma and myeloma. Together, they comprise nearly 10% of all cancers and are the fourth most common cause of cancer-related deaths in Ireland.
Despite this, many people are unaware of the symptoms associated with blood cancer, or often put them down to something else.
New research carried out to mark Blood Cancer Awareness Month, which is currently taking place, found that two in three people in Ireland mistake blood cancer for skin cancer.
The Make Blood Cancer Visible campaign aims to change this by raising awareness about the disease. It was launched by former professional boxer Barry McGuigan, whose father Pat died from Non-Hodgkin’s Lymphoma – a rare type of blood cancer – in 1987.
Pat died within 10 weeks of his diagnosis. He was just 52 years old at the time.
Speaking to TheJournal.ie, McGuigan says his family were “shocked and devastated” by what happened.
McGuigan recalls: “Initially I remember him shaving in the bathroom and he says, ‘Come on in here til you have a look’. He had a white vest on and one side of his diaphragm was swollen up. He joked and he said, ‘Ah, it’s probably cancer’.
“Anyway a couple of weeks later he went to the doctor, he got very bad pains in his tummy and that’s how it all manifested really.
“The doctor was pretty blunt, he said ‘It’s not good’. He ran tests and said ‘I don’t think you’re going to be very happy with this news’, so the old man was very devastated. Nine or ten weeks later…”.
McGuigan says he believes the medical team looking after his father “did their level best” but, had he been diagnosed nowadays, he may have survived given the improvements in treatment since then.
The boxing promoter jokes about being “pretty much a hypochondriac”, noting: “Any twinge, ‘Oh Christ, go to the doctor, run!’ That’s a slight exaggeration … but I do look after myself, it’s the thing to do.
He said he knows some men for whom it’s “a badge of honour to say they never go to the doctor”.
McGuigan advises against this kind of attitude, stating: “By getting these things early you stand a much better chance of recovery.” He says he wanted to be a part of the awareness campaign to show people there is a lot more hope for patients diagnosed these days, people like Jan Rynne.
Clinical trial
Rynne lives in Drumcondra with her husband and four children. She was diagnosed with Chronic Lymphocytic Leukaemia (CLL), a type of cancer in which the bone marrow makes too many lymphocytes (a type of white blood cell), in 2011. She was 39 at the time.
Her diagnosis came after a couple of years of frequent sinus and chest infections. Rynne had also been suffering with a long bout of red eye (episcleritis) and went for tests to see why the infection wasn’t clearing up. She never imagined cancer was the underlying cause.
I had never heard of [CLL]. We were pretty much in the dark for a while. Honestly, the impact of a diagnosis like that is quite devastating – particularly with a young family at home.
Rynne says she was “very symptomatic for the first three years” – suffering from debilitating fatigue, recurrent infections, anemia and pneumonia, among other issues. In one 12-month period, she was hospitalised eight times.
“It was pretty grim, we were just taking it day by day,” she tells TheJournal.ie.
Her haematologist is a specialist in CLL and the timing of her diagnosis coincided with the development of newer, targeted treatments that greatly improved the prognosis for people with the condition.
At the time of her diagnosis, she had four children under the age of 11. “I really wanted longevity,” she recalls.
Her haematologist referred her to a CLL expert in Leeds and she was put on the waiting list for an upcoming clinical trial. After 10 months, the trial began and she had to travel to Leeds once a week to receive treatment.
Rynne said relatives, friends and neighbours were a huge support at this time – helping to mind her children while she and her husband were in the UK.
From the first day that I started this novel therapy, it has been an improving picture. It wasn’t instantaneous, it was certainly a gradual improvement. My energy levels are back to pre-diagnosis levels.
As she reacted well to the treatment, Rynne’s trips to Leeds became less frequent and she now only has to go there twice a year. She takes three tablets every day and is able to manage the side effects such as joint pain and heartburn.
Rynne and her husband Michael struggled to find information about CLL when she was first diagnosed and turned to the internet to learn more and get in touch with other patients.
They’ve since said up CLL Ireland – a patient-led voluntary group that aims to provide people with information and support.
Michael explains: “We want patients to advocate for themselves and look for the better treatments and ask the doctors questions, get informed about the disease.”
Symptoms
Michael O’Dwyer, Professor of Haematology at NUI Galway and director of Blood Cancer Network Ireland, says Rynne’s story is an example of how medical advances have improved patients’ prognosis and quality of life.
“Over the past few decades, science has advanced quickly and opened doors for more precise treatment, and we have seen exciting progress in our understanding and ability to treat blood cancers. Survival rates reflect our remarkable progress in diagnosis and treatment.
“In Ireland, the five-year net survival for someone diagnosed with multiple myeloma, for example, has nearly doubled in the period from 1994-2013 and continues to improve.
Despite this progress, the need is still great for continued investment in clinical research and innovation in this field, but also for patients to recognise their symptoms earlier.
The symptoms of blood cancer include enlarged lymph glands, chronic fatigue, anaemia, weightloss, unexplained fevers or night sweats and bone pain. As many of these symptoms could be due to issues other than cancer, they’re sometimes ignored or misdiagnosed.
If you’re concerned about any changes in your health, O’Dwyer advises that you go to your doctor.
The Make Blood Cancer Visible campaign is supported by the Irish Cancer Society, Multiple Myeloma Ireland and Chronic Lymphocytic Leukaemia Ireland, in partnership with Janssen, a pharmaceutical company.
The campaign will host a free patient information event for people living with blood cancer on Wednesday, 27 September at 6.30pm in the Davenport Hotel on Merrion Street Lower, Dublin 2. More information can be read here. More details about CLL Ireland are available here.
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