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NCCN Publishes First-ever Treatment Recommendations Pertaining To Neuroblastoma
The National Comprehensive Cancer Network® (NCCN®)-;an alliance of leading cancer centers-;today published its first ever set of treatment recommendations pertaining to neuroblastoma. Neuroblastoma is a type of solid tumor cancer that typically occurs in early childhood, with the majority diagnosed before age five. Neuroblastoma is the most common type of solid tumor (outside of brain tumors) in children, with more than 700 cases diagnosed in the United States every year. Research innovations have led to survival rates that are better than 90% for patients with low- and intermediate-risk neuroblastoma and around 50% for those with high-risk disease. Improving outcomes for patients with high-risk neuroblastoma and reducing long-term treatment effects for all patients remain areas of active research.
"Neuroblastoma is a biologically and clinically heterogeneous cancer, which creates many challenges for those treating patients with this disease," said Rochelle Bagatell, MD, Professor of Pediatrics and Solid Tumor Section Chief at Children's Hospital of Philadelphia, and Chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for Neuroblastoma. "The NCCN Guidelines were designed to assist clinicians caring for children with neuroblastoma by providing key information regarding risk stratification and by summarizing the data that have led to the current approaches to therapy. As new clinical trial results become available and as therapies evolve, we will continue to support providers by updating the guidelines over time."
Dr. Bagatell will be presenting an on-demand online session on the latest updates for neuroblastoma in the new NCCN Guidelines as part of the NCCN 2024 Annual Conference on April 5 – 7. Visit NCCN.Org/conference to learn more and register.
These new NCCN Guidelines for Neuroblastoma are the perfect platform for sharing how to think about this complicated disease and determine which categories of treatment should be considered for each individual patient. The guidelines break down how to incorporate the multi-disciplinary care that is needed, such as surgery or radiation, plus specific options for chemotherapy regimens."
Julie R. Park, MD, Chair, Department of Oncology, St. Jude Children's Research Hospital, Vice-Chair, NCCN Guidelines Panel for Neuroblastoma
There are now 87 different NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), covering nearly every type of cancer, plus screening, prevention, and supportive care. The NCCN Guidelines® for Neuroblastoma are the 6th to focus specifically on treating pediatric cancer.
The NCCN Guidelines have a long history of providing treatment guidance that correlates with improved outcomes across numerous cancer types. The recommendations are determined by a multidisciplinary panel of experts from NCCN's Member Institutions using the best available evidence and are updated at least once every year. By utilizing specialists with diverse areas of expertise and geographic locations, the panels are able to make sure the recommendations are thorough, representative, and understandable-;particularly for clinicians who may not see patients with neuroblastoma very often. The NCCN Guidelines are intended as a resource for care providers and coverage determinations throughout the U.S. And around the world.
"We are particularly concerned with figuring out how to minimize treatment where possible," said Dr. Park. "We wanted to make it easy for providers to quickly recognize which patients can have positive outcomes while experiencing less toxicity. That means including a lot of information on diagnosis and delving into analysis for molecular drivers and aspects of immunotherapy."
Some of the common late effects from neuroblastoma treatment can include fertility issues, growth impairment, hearing trouble, and organ dysfunction. NCCN also publishes NCCN Guidelines for Adolescent and Young Adult Oncology, which provide treatment advice geared toward younger populations across all cancer types. There are separate NCCN Guidelines for Survivorship that include additional information on mitigating the long-term impact of treatment.
Little Emily Borg Died Aged 5 After Battling Neuroblastoma. But It Wasn't The Disease That Killed Her, As Her Family Make A Desperate Plea To The Government To Prevent Trauma ...
Oncology patient Emily Borg was cancer-free when she died aged five.
Her immune system had been obliterated by the treatment designed to save her life, so when she caught a rare fungal infection weeks after, her body could not fight it off.
The best available anti-fungal was not approved for use in children, and even if Emily's doctor applied for use on compassionate grounds it was likely to be rejected.
By August 2023 the infection had reached Emily's brain, causing six aneurysms and an eventually fatal stroke.
Emily Borg, 5, died of a rare fungal infection after her immune system was compromised by treatment for neuroblastoma
'In the end, it was not the cancer that took her life, it was the treatment,' Emily's aunt Kate Cantrell told AAP.
'All anyone could seem to say was, 'Emily was just very unlucky'.'
Dr Cantrell wants to ensure this never happens to another Australian family and is calling on the government to invest further in safer, kinder and more effective treatments for children with cancer.
When she was four-and-a-half years old Emily was diagnosed with the rare and particularly aggressive form of childhood cancer, neuroblastoma.
Doctors were forced to throw the kitchen sink of treatments at her.
One of the drugs Emily was given, thiotepa, was so toxic her father had to bathe her every four hours.
Luckily, her body responded perfectly.
She was declared to have no evidence of disease but because of the high likelihood of relapse, Emily had to undergo the bone marrow transplant that would destroy her immune system.
The medical team assured her loved ones that Emily was in the best position possible.
Since then, her family has been left wondering if they made the right decisions but they soon found Australian children had comparatively little choice.
Australia's treatment protocol for neuroblastoma has only undergone one change in the last decade, Neuroblastoma Australia CEO Lucy Jones says, which means patients haven't been able to substitute the more toxic drugs with newer and safer alternatives.
Childhood disease treatments also are not as commercially viable, so Australia's pharmaceutical companies tend to focus on common adult cancers.
In the US and Europe however, drug companies receive government funding to research childhood cancer, giving those regions greater access to innovative and world-leading solutions that leave less significant after-effects.
Red tape can also block access to life-saving medicines, which must undergo clinical trials in Australia, even if they are found to be effective in the US and Europe, and the entire approval process takes 18 months on average.
Even then, many will not be approved for children.
'All it does is slow down access to that drug and cost lives as people wait,' Ms Jones said.
As a result, families sometimes pay hundreds of thousands of dollars to send their children to overseas hospitals.
From the moment Emily was diagnosed, her family began searching for half a million dollars so she could travel to New York for a vaccine.
'Australian families are bankrupting themselves and burning out,' Dr Cantrell said.
Emily and her aunt Kate Cantrell posing for a photo as her family call for the red tape to be cut on a drug that could have saved the five-year-old's life
'I never thought, until Emily was diagnosed, that a child could be disadvantaged because they lived in Australia, the so-called lucky country.'
The government has provided $60 million to fund Zero Childhood Cancer, a program that offers genomic cancer testing to all children with the disease.
It has also offered grants for children's brain cancer research, committing $20 million for research into Diffuse Intrinsic Pontine Glioma (DIPG) in February, and $15 million into drug development research for prostate and childhood cancers like neuroblastoma.
While Ms Jones applauded the funding commitments, for funding to have a significant impact each childhood cancer would need about $50 million per year due to the costs of clinical trials.
But if the government created a $100 million research pool for childhood cancers and ensured a collaborative approach, it could address a variety of diseases and the consequences of common treatments, she said.
Dr Cantrell paid tribute to Emily at Parliament House when she fronted a Senate committee in late January.
Emily referred to the tumour as 'the monster in her belly' and once ran away upon hearing a knock at the door, afraid the spectre had returned.
Not yet knowing how to write, she would text her aunt with emojis, liberally using the poo and vomit symbols.
Emily would also prank oncology staff, filling her urine sample cups with apple juice and hiding toy snakes in hospital drawers.
'She was a little firecracker,' Dr Cantrell said.
'I miss her energy, the lightness and the laughter that she brings, I miss the sound of her voice.
'All childhood cancer is rare, but it's not rare when it happens to you.'
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Kids Helpline 1800 55 1800 (for people aged 5 to 25)
New Resource For Selecting Best Treatment Path For Young Children With Cancerous Tumors Published By NCCN
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New NCCN Guidelines for Neuroblastoma are now available free-of-charge at NCCN.Org or via the Virtual Library of NCCN Guidelines® App.
view moreCredit: NCCN
PLYMOUTH MEETING, PA [February 7, 2024] — The National Comprehensive Cancer Network® (NCCN®)—an alliance of leading cancer centers—today published its first ever set of treatment recommendations pertaining to neuroblastoma. Neuroblastoma is a type of solid tumor cancer that typically occurs in early childhood, with the majority diagnosed before age five.[1] Neuroblastoma is the most common type of solid tumor (outside of brain tumors) in children, with more than 700 cases diagnosed in the United States every year.[2] Research innovations have led to survival rates that are better than 90% for patients with low- and intermediate-risk neuroblastoma and around 50% for those with high-risk disease.[3] Improving outcomes for patients with high-risk neuroblastoma and reducing long-term treatment effects for all patients remain areas of active research.
"Neuroblastoma is a biologically and clinically heterogeneous cancer, which creates many challenges for those treating patients with this disease," said Rochelle Bagatell, MD, Professor of Pediatrics and Solid Tumor Section Chief at Children's Hospital of Philadelphia, and Chair of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) Panel for Neuroblastoma. "The NCCN Guidelines were designed to assist clinicians caring for children with neuroblastoma by providing key information regarding risk stratification and by summarizing the data that have led to the current approaches to therapy. As new clinical trial results become available and as therapies evolve, we will continue to support providers by updating the guidelines over time."
Dr. Bagatell will be presenting an on-demand online session on the latest updates for neuroblastoma in the new NCCN Guidelines as part of the NCCN 2024 Annual Conference on April 5 – 7. Visit NCCN.Org/conference to learn more and register.
"These new NCCN Guidelines for Neuroblastoma are the perfect platform for sharing how to think about this complicated disease and determine which categories of treatment should be considered for each individual patient," explained Julie R. Park, MD, Chair, Department of Oncology, St. Jude Children's Research Hospital, Vice-Chair, NCCN Guidelines Panel for Neuroblastoma. "The guidelines break down how to incorporate the multi-disciplinary care that is needed, such as surgery or radiation, plus specific options for chemotherapy regimens."
There are now 87 different NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), covering nearly every type of cancer, plus screening, prevention, and supportive care. The NCCN Guidelines® for Neuroblastoma are the 6th to focus specifically on treating pediatric cancer.
The NCCN Guidelines have a long history of providing treatment guidance that correlates with improved outcomes across numerous cancer types. The recommendations are determined by a multidisciplinary panel of experts from NCCN's Member Institutions using the best available evidence and are updated at least once every year. By utilizing specialists with diverse areas of expertise and geographic locations, the panels are able to make sure the recommendations are thorough, representative, and understandable—particularly for clinicians who may not see patients with neuroblastoma very often. The NCCN Guidelines are intended as a resource for care providers and coverage determinations throughout the U.S. And around the world.
"We are particularly concerned with figuring out how to minimize treatment where possible," said Dr. Park. "We wanted to make it easy for providers to quickly recognize which patients can have positive outcomes while experiencing less toxicity. That means including a lot of information on diagnosis and delving into analysis for molecular drivers and aspects of immunotherapy."
Some of the common late effects from neuroblastoma treatment can include fertility issues, growth impairment, hearing trouble, and organ dysfunction.[4] NCCN also publishes NCCN Guidelines for Adolescent and Young Adult Oncology, which provide treatment advice geared toward younger populations across all cancer types. There are separate NCCN Guidelines for Survivorship that include additional information on mitigating the long-term impact of treatment.
All NCCN Guidelines are available with a free account at NCCN.Org or via the Virtual Library of NCCN Guidelines®App.
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About the National Comprehensive Cancer Network
The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. The NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®) provide transparent, evidence-based, expert consensus recommendations for cancer treatment, prevention, and supportive services; they are the recognized standard for clinical direction and policy in cancer management and the most thorough and frequently-updated clinical practice guidelines available in any area of medicine. The NCCN Guidelines for Patients® provide expert cancer treatment information to inform and empower patients and caregivers, through support from the NCCN Foundation®. NCCN also advances continuing education, global initiatives, policy, and research collaboration and publication in oncology. Visit NCCN.Org for more information.
[1] Neuroblastoma Treatment (PDQ®): Health Professional Version. 2023 Aug 22. In: PDQ Cancer Information Summaries [Internet]. Bethesda (MD): National Cancer Institute (US); 2002. 2023. Available at: https://www.Ncbi.Nlm.Nih.Gov/books/NBK65747/
[2] About Neuroblastoma. Available at: https://www.Cancer.Org/content/dam/CRC/PDF/Public/8758.00.Pdf.
[3] Neuroblastoma Early Detection, Diagnosis, and Staging. 2021. Available at: https://www.Cancer.Org/content/dam/CRC/PDF/Public/8760.00.Pdf
[4] Friedman DN, Henderson TO. Late Effects and Survivorship Issues in Patients with Neuroblastoma. Children (Basel) 2018;5.
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