About 350 people are diagnosed with multiple myeloma each year in Ireland and although, a rare and incurable blood disorder, it is treatable and patients can live a normal life. This is the focus of an upcoming fundraiser as experts aim to raise awareness about the condition.
Ann Fleming’s symptoms started nine years ago with a niggling shoulder pain, which she assumed was due to an old sporting injury. She had also been losing weight and struggling with fatigue, but put this down to menopause and tried to alleviate the problem with diet and exercise.
After visiting her GP in 2016, the 60-year-old widowed mother-of-four was referred for an MRI, which proved inconclusive, but a subsequent examination revealed a small lump on her collarbone which turned out to be cancerous.
“To be honest, the diagnosis was a relief as I was quickly given lots of support and advice along with a treatment plan, so once this started, I felt a little more in control,” she says. “As I was fit and healthy, I was considered suitable for a stem cell transplant and, in April 2016, I started on induction therapy, followed by the transplant.
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“It took some time to regain my strength and appetite, but I returned to life and work [as a teacher], travelled at every opportunity and generally got back to enjoying myself. But unfortunately, I had a relapse 20 months later.”
She underwent a second transplant. However, this was not as successful as hoped and, within six months, she was back on treatment, which is still ongoing. But the Kildare woman is doing well, despite retiring earlier than she had planned, and would encourage others who have just been diagnosed with the condition to stay positive, do as much research as possible and avail of any support offered.
“Most people have never heard of multiple myeloma before they are diagnosed with it,” she says. “Often treatment is started very quickly, and a patient is in shock as they don’t have time register what is happening. There will be rough times but there will also be good times, so my advice is to join a support group or go to a patient information day, connect with other patients who understand what you are going through, and this will support you.
“Also, do some research. Know about myeloma and how it affects you. Be informed about your treatments and all the new advances which are becoming available. At some point in your journey, you may have treatment choices to make, so it’s good to be informed. The future is bright for myeloma patients with lots of treatment options but also lots of supports to help you live your best life.”
Prof John Quinn agrees and says the condition, which is most common in people of 60 and older, is “very treatable, even after relapse”. He says people should be aware of the symptoms and seek advice if any concerns.
“The most common initial symptom is bone pain and typically back pain which persists and progresses despite the use of painkillers,” he says. “Other symptoms can include weight loss, fatigue, malaise and increased frequency of infections over several months. A diagnosis of multiple myeloma is usually suspected after a patient visits a doctor and has blood tests and/or X-ray tests.
“Treatment options have improved dramatically in the last 25 years with many different treatments available. Multiple myeloma is still regarded overall as an incurable blood cancer but affected patients are living longer and longer.”
Multiple Myeloma Ireland (MMI) is advocating for greater awareness and a national database for the condition and is urging people to walk, run, swim or cycle for “Miles for Myeloma” during the month of September.
For more information on how to take part, visit multiplemyelomaireland.org
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