A mother who prepared her children for ‘mummy’s last
Helen Wynne Hughes, 32, who lives in Ruthin, Denbighshire, was given a devastating terminal diagnosis and told to prepare her children ‘for the worst’.
She made memory boxes for children Aled, four, Tomos, two, and 19-month-old Beca last Christmas to remember her.
However, the mother-of-three was given a glimmer of hope when she was offered pioneering cancer treatment. Helen became the first woman in Wales to get CAR-T therapy, which uses the body’s own cells to fight the disease.
She has now been given the all-clear.
Helen Wynne Hughes, 32, who lives in Ruthin, Denbighshire, has been cleared of cancer after becoming the first woman in Wales to get CAR-T therapy. Pictured: Helen and husband Elgan with children Aled, four, Tomos, two, and 19-month-old Beca
Helen said it was ‘very hard’ having to make memory boxes last year, as she prepared her children for ‘mummy’s last Christmas’. Pictured: Helen during treatment
Helen said: ‘I had to tell them ‘perhaps it is mummy’s last Christmas.’
WHAT IS CAR-T CELL THERAPY?
CAR-T cell therapies are available on the NHS for children and people up to 25 with B cell acute lymphoblastic leukaemia.
The treatments involve taking a specific immune cell – known as T cells – from a patient’s blood. T cells help the body fight infection by seeking out viruses and other pathogens, before killing them.
These cells are then engineered in the lab to express a gene that codes for a specific receptor that binds to a protein on the patient’s cancer.
Once these cells are re-infused into a patient’s blood, their immune system is ‘reprogrammed’ to recognise and fight off tumours.
CAR-T – chimeric antigen receptor T-cell – therapy is therefore customised to each patient. It is suitable for those with advanced or worsening blood cancers that are not responding to treatment or have relapsed.
NICE – which provides guidance for the NHS – also recommends CAR-T therapy for adults with diffuse large B-cell lymphoma and primary mediastinal B-cell lymphoma.
The FDA in the US approved two CAR-T cell therapies in 2017.
‘They are so small, it was very hard. Making memory boxes, looking back thinking I might not get to do things with them again.’
Helen was first diagnosed on Christmas Eve 2018 when scans revealed a mass on her chest ‘the size of a grapefruit’.
She had felt unwell during her third pregnancy and was diagnosed with lymphoma.
She said: ‘I was allowed to go home on Christmas Day to see the children open their presents and have lunch.
‘But I only managed two hours as I was so ill.’
She started chemotherapy and 10 weeks later gave birth to her ‘bundle of joy’ Beca.
However, last autumn she was given the devastating news that the cancer was unresponsive and had spread to her bones, liver, lungs.
She said: ‘I was told to prepare my children for the worst.’
Helen was later told she qualified for the new Chimeric Antigen Receptors Cell Therapy that had just been approved by the NHS.
She said: ‘CAR-T was the last hope for me. I’d do anything.’
Helen and husband Elgan had looked into getting the treatment privately but the estimated £500,000 bill made it ‘out of our reach’.
She spent five weeks at The Christie Hospital cancer centre in Manchester when the first coronavirus lockdown had just started.
Helen said: ‘There were some quite shocking side effects.
‘I couldn’t remember who I was, I couldn’t eat and I couldn’t walk properly but it was all worth it.’
The family then faced a six-month wait to learn if the treatment had worked.
Helen was diagnosed with lymphoma during her third pregnancy and gave birth just 10 weeks after starting chemotherapy. Pictured: Helen with her family at her wedding in 2019
Helen said side effects of the new Chimeric Antigen Receptors Cell Therapy included memory loss and being unable to eat. Pictured: Helen and Elgan before her treatment
Helen revealed she and husband Elgan had considered private treatment but couldn’t afford the £500,000 bill. Pictured: Helen before her treatment
Helen who has now been given the all clear, said she was prepared for the worst but CAR-T ‘has saved’ her life. Pictured: Helen before treatment
Helen has now been given the all clear.
She said: ‘When the doctor said it was clear we were in tears. Finally, there was no cancer at all.
‘I was prepared for the worst but luckily CAR-T has saved my life.
‘I feel quite proud being the first female from Wales to have the treatment and hopefully many more after me will be allowed to have the treatment.’
Helen is now also looking for a stem cell donor and hoping to go back to work as a primary school teacher later next year.
She added: ‘The stem cell treatment will hopefully mean the cancer can’t return. So I’m looking for a match.’
Helen revealed she’s looking for a stem cell donor to prevent the cancer from returning and hopes to return to work next year. Pictured: Helen and her husband in 2019
What is Hodgkin’s lymphoma?
Hodgkin’s lymphoma is a type of cancer that starts in the white blood cells.
It affects around 1,950 people each year in the UK.
A common early symptom is having a painless swelling in the armpits, neck and groin.
Some people also experience heavy night sweating, extreme weight loss, itching, shortness of breath and coughing.
Hodgkin’s lymphoma is most common between the ages of 20 and 24, and 75 and 79.
It has been linked to people with lowered immunity, a family history of the condition, smokers and those who are overweight.
Treatment may include chemotherapy, radiotherapy, steroids and stem cell or bone marrow transplants.
Source: Cancer Research UK