A Cornish father and daughter diagnosed with the same rare incurable blood cancer three years apart are on a mission to fund new treatments before it’s too late.
Neil Pearce, from Looe, was diagnosed with myeloma back in December 2017 and is now on his final treatment option.
Despite suffering from nagging backache and fatigue for six months, his cancer was repeatedly missed and misdiagnosed first as polymyalgia (a condition that causes pain, stiffness and inflammation in the muscles) and then as rheumatoid arthritis.
By the time his myeloma was caught, Neil, then 71, had holes, or lesions, in his lower back.
In a cruel twist of fate, his daughter Hannah Pearce from Liskeard, was diagnosed with the same disease in 2020, after her cancer was missed for a year and initially misdiagnosed as costochondritis, an inflammation of the cartilage that connects a rib to the breastbone.
She was just 46 years old.
While Hannah has responded well to treatment, Neil’s cancer has unfortunately returned three times over the past five years.
Neil, 77, is currently on his last round of available chemotherapy, after which the grandfather-of-eight will have exhausted all treatment avenues.
Hannah is now gearing up to run the Edinburgh Marathon on Sunday 28 May in a bid to help charity Myeloma UK fund vital research into new treatments before her dad runs out of options.
She also hopes that sharing their struggles to get the right diagnosis will help raise awareness of the tell-tale symptoms and make sure others don’t have to endure what they went through.
The mother-of-one said: ‘We both had to wait to get a diagnosis and you can’t help but wonder “What if?”. What if I had both had an earlier diagnosis, would it have changed the outcome or the amount of years we will have with our families?’
‘I started getting pain and discomfort in my sternum in October 2019, but I wasn’t diagnosed until October 2020 – after several calls to the doctor, a chest X-ray which we now know was unfortunately misread, and even being told by a GP I was not in enough pain for it to be anything serious.
‘If I think back, the pain came and went but there were times when I couldn’t go to bed, I had to sleep upright in a chair. On occasions it was too painful to even hug my daughter Tegen.
‘Even if we can get research and funding for just one more treatment, another chemo that would keep my dad going a bit longer, all the running would be well worth it.’
Myeloma occurs in the bone marrow and currently affects over 24,000 people in the UK.
It is a relapsing-remitting cancer, meaning that although many patients will experience periods of remission following treatment, the disease will inevitably return.
Despite being the third most common type of blood cancer, it is especially difficult to detect as symptoms, including back pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions.
More than half of patients face a wait of over five months to receive the right diagnosis and around a third are diagnosed through A&E. By that point, many of them are experiencing severe or life-threatening symptoms.
While it is incurable, myeloma is treatable in the majority of cases. Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving patients’ quality of life.
‘We both want to live as long as possible,’ said Hannah. ‘That’s why I’m raising money for research and treatments. There’s still a lot we don’t know about myeloma and how it’s genetically passed on.
‘My main focus has to be on my daughter – she’s 15 and is in the middle of her GCSEs. Equally dad has other children and grandchildren and they are also a consideration. As must be other families affected by the disease, to be able to help them would be so rewarding.’
Running the Edinburgh Marathon is a huge milestone for Hannah and will mark two years since her stem cell transplant.
She has raised £1,525 so far for Myeloma UK.
‘Training has been very tiring and quite a struggle at times,’ said Hannah, who will run the marathon with her partner Clyve.
‘In our training runs Clyve has been brilliant. He carries my water, energy gels and keeps me motivated when I’m struggling. For me it’s also a way to regain some level of fitness and to hopefully prove that there is a full and rewarding quality of life after a stem cell transplant.
‘Anything is possible.’
To support Hannah and Neil’s fundraising efforts visit their page on JustGiving
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