Newcastle’s childhood cancer experts offer pioneering cancer trial treatment

Experts at Newcastle’s Great North Children’s Hospital have taken further steps in their fight against childhood cancer, as they celebrate new developments at this world-leading centre.

The Great North Children’s Hospital (GNCH) is a key member, and leading co-ordinator, of a major new Northern Network, encompassing the whole of Northern England, Scotland and Northern Ireland, with the primary aim of making ‘Early Phase’ (new and experimental) treatments available to children diagnosed with all types of cancer.  This new Network approach is the first of its kind in the UK and will be the national forerunner, eagerly watched by other Centres across England.

GNCH is also part of a European Consortium of Experimental Cancer Treatment Centres, and was recently chosen, following a rigorous and competitive process, to be one of only a limited few, specially designated major cancer treatment centres in Europe, allowed to run the newest and most challenging trials - Phase 1 Centres.

Dr Quentin Campbell Hewson, a Consultant Paediatric Oncologist and Unit Lead for early phase clinical trials in Children’s Cancer at GNCH explains: “Children’s cancer treatment is a relative success story. We now cure more than 80% of children with currently established treatments.

“However, we still see a small number of patients who cannot be cured with current therapy, and of those who are cured, many will have serious long term side effects as a result of their curative treatment. Because of this, we continuously seek new therapies for children’s cancer.”


Dr Quentin Campbell Hewson, Consultant Paediatric Oncologist (photo credit: ncjmedia)

Yet carrying out early phase clinical trials for new and experimental treatments is difficult.  Dr Campbell Hewson continues: “The number of children we see at GNCH with cancer is relatively small – around 120 every year. Of this number we see very small numbers of rare cancers. For example, we diagnose only 2 or 3 children each year with high risk neuroblastoma, an extremely painful tumour which affects the nervous system.

“Neuroblastoma is a very dangerous type of cancer which can be difficult to treat. Over time we have been able to improve the success rate of treatment to around 50%, for even the most high risk tumours. We need to do more, yet the only way to improve this rate, is to keep trying new therapies through careful and closely monitored clinical trials.”

For many years in the RVI’s Children’s Cancer Unit, and our very closely associated research unit at Newcastle University’s Northern Institute for Cancer Research, have been very involved with the development of the treatment of neuroblastoma – working together as Newcastle Academic Health Partners. The current European chemotherapy regimen was developed here in Newcastle, and our pharmacology department has been crucial in identifying the correct dosing for the treatments involved.

Prior to setting up the new Northern Network, clinical trials at GNCH covered the North East and Cumbria region with a population of roughly 3 million people.  Individually, there are only a handful of patients with a type of cancer for which clinical trials are being run. Historically, this has meant there were not enough patients to make clinical trials possible locally, and so young patients with rare cancers in the North East, were having to go to London, or even abroad to access new therapies.

Dr Campbell Hewson says: “By developing a new Network to include children’s cancer centres in Glasgow, Edinburgh, Dundee, Aberdeen and Belfast , we have been able to increase the population we draw patients from, from 3 to 10 million.”

He adds: “Of course becoming a European ‘Designated Phase 1 Centre’ makes us much more attractive as a trials centre.  We can now quickly offer pioneering new trials to more patients, and work closely with our colleagues within the Northern Network to monitor post treatment effects and outcomes. And the more trials we successfully run, the more trials we will be offered to participate in.

“This is extremely exciting and means that both our staff and young patients will be integral to finding the effective, new treatments of the future.”


Case Study

Four year old Rhys Hume from Derry in Northern Ireland is currently a patient at the Great North Children’s Hospital. He is currently taking part in a pioneering experimental therapy for High Risk Neuroblastoma – a long term infusion GD2 study. The nearest children’s hospital to where Rhys lives is in Belfast – the Royal Belfast Hospital for Sick Children - where clinicians can offer conventional cancer therapy, but not new therapies.

Four year old Rhys with his twin Cein on Ward 4, Great North Children's Hospital

Dad Noel explains: “We noticed last year that Rhys had stopping eating so much and was losing weight. After about three weeks we took him to the dentist and found he needed to have some teeth taken out. We thought that would be it.”

But Rhys didn’t get any better and so his GP referred him to his local hospital where an ultrasound found a mass in his abdomen. From there he went to Belfast and in September 2014, Rhys was diagnosed with a malignant form of neuroblastoma. The symptoms which Rhys had been complaining of were typical – losing weight, becoming pale and feeling miserable. High Risk Neuroblastoma usually rapidly spreads to the bones.

Rhys’s dad continues: “We felt like we had walked into a nightmare. We were truly shocked but everyone has been absolutely brilliant. No question was too small and we talked through everything – all the options available.”

Neuroblastoma usually occurs in children under the age of five years and grow from one of the two adrenal gland in the abdomen (tummy). They start off shaped like a ball, then grow around vital nearby blood vessels. The tumour often grows very rapidly and so can often be quite large before it can actually be felt.  In Rhys’s case the tumour was sitting on the top of his left kidney and had wrapped itself around the arteries of the spleen.

Rhys’s treatment started in Belfast with conventional treatment to shrink the tumour, followed by surgery to remove as much as possible. Rhys’s dad continues: “The surgeons decided to remove the kidney and altogether they think they got about 90% of the tumour out. The remainder attached to the arteries was too dangerous to try to remove, so Rhys then had some radiotherapy directly to the remaining bit of tumour.”

Biopsies taken from the tumour showed ‘biological markers’ in the cells which confirmed that Rhys’s neuroblastoma is the aggressive High Risk Neuroblastoma form. In this situation it is important to offer the most effective treatments known.

Dr Campbell Hewson explains: “There are certain new therapies which are available for children with high risk neuroblastoma but these need to follow strict European guidelines, with very precise timings. Unfortunately for Rhys, his clinical circumstances were such that he could not continue in the High Risk Neuroblastoma Trial which is the standard course of treatment for high risk neuroblastoma.

“However, because of the new Northern Network approach, we are now able to offer a second clinical trial. This is called the Long Term Infusion anti GD2 study – an important and promising therapy when given alongside other standard treatment for neuroblastoma, again under rigorous clinical trial principles. The GD2 antibody recruits the body’s own immune system to seek out remaining cancer cells”

Rhys has been staying with his Dad at the Great North Children’s Hospitals for the duration of the 10 day infusions treatment – a long time to be apart from his twin Cein who has travelled over, to be reunited with his brother.

Dad says they have been treated like members of an extended family whilst on the Children’s Cancer Ward. He says: “I can’t explain how wonderful everyone has been. From Hina – the Clinical Trials Nurse who was one the very first people we met, to Dr Campbell Hewson and his team. The nursing staff, Claire the play specialist, even the domestics. And the other parents have been like rocks. I’ve met the most inspirational people here and we will go back home with very special memories, strange as that may sound.”

Rhys goes home now to Derry for the last bit of his GD2 trial treatment and will be monitored by the doctors in Belfast. He will return to Newcastle for follow up scans but so far, Rhys looks to be in remission.

His Dad says; “We don’t know if Rhys is cured and we won’t know for sure for a few years yet.   We know neuroblastoma can come back so we are willing to try anything to prevent this and are so thankful to have found ourselves in the fortunate position of being able to take part in this new trial in Newcastle.”

About Neuroblastoma

  • Fewer than 100 children in the UK are diagnosed each year with neuroblastoma. Only around 2 or 3 are diagnosed with High Risk Neuroblastoma in the North East and Cumbria every year.
  • Most children who get this cancer are younger than five years old.
  • Neuroblastoma, whilst uncommon, is the second most common solid tumour in childhood, and it makes up 8% of the total number of children's cancers.

The Great North Children’s Hospital

The Great North Children's Hospital (GNCH) at the RVI in Newcastle is one of the largest children's hospitals in the UK. GNCH cares for poorly or injured children from Newcastle, Gateshead, North Tyneside and Northumberland and also provides highly specialised care for all children in the North East and North Cumbria with severe or long-term illnesses. As an internationally leading research centre, clinicians at GNCH work side by side with research staff to constantly improve treatments for all childhood diseases.

Newcastle Academic Health Partners

Newcastle Academic Health Partners is a collaboration involving the Newcastle upon Tyne Hospitals NHS Foundation Trust, Northumberland, Tyne and Wear NHS Foundation Trust and Newcastle University. This partnership harnesses world-class expertise to ensure patients benefit sooner from new treatments, diagnostics and prevention strategies.

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