CAC2 Childhood Cancer Community News Digest (December 9-15)

Assorted News from the Last Week: The simple act of asking young patients about their symptoms regularly during cancer treatment can help them get more supportive care and reduce distressing side effects, according to the results of two new clinical trials. A simple change to the chemotherapy regimen for people with Hodgkin lymphoma could reduce the long-term health impacts that can result from treatment. Indian researchers are working on developing less expensive treatment for children's blood cancers. Frequent copy number gain of MCL1 is a therapeutic target for osteosarcoma. The survival rate for children high risk neuroblastoma could one day [...] Read more

CAC2 Childhood Cancer Community News Digest (December 2-8)

Assorted News from the Last Week: CAC2 Individual Member Jennifer Flowers writes compellingly about "When the National Drug Shortage Becomes Personal" for her. Published in JAMA: "Stakeholder Perspectives on Randomized Clinical Trials for Children With Poor-Prognosis Cancers." Many CAC2 Members contributed to this of how and when randomized clinical trials (RCTs) should be deployed to best meet the needs of all involved. Reported at the ASH meeting this week: An investigational CAR T-cell therapy induced responses in nearly every single patient with childhood B-cell acute lymphoblastic leukemia (B-ALL). Children with newly diagnosed B-cell acute lymphoblastic leukemia (B-ALL) lived significantly longer [...] Read more

CAC2 Advocacy Alert: End-of-Year Call to Action

During our October federal advocacy drop-in session, we learned about several pieces of legislation that had a good chance to pass before the end of the year and also alerted everyone that “advocates may be called on to make a final push between now and the end of the year.”  That time has come! During this week of action, we need your help: Accelerating Kids’ Access to Care Act—230 organizations (about a third from CAC2) have signed a letter urging lawmakers to pass the bill in the end-of-year legislative package (here’s a link to that letter). Beginning today, December 9th […]

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Member Blog–When the National Drug Shortage Becomes Personal

By CAC2 Individual Member Jennifer Flowers Rhabdomyosarcoma became a common word in my family when I was three years old. By the time of diagnosis, the cancer had metastasized from the middle ear into the mastoid and eustachian tube. The University of Michigan’s C.S. Mott Children’s Hospital oncology team told my parents there was less than a three percent chance for me to live out the year. There was no definitive treatment protocol to defeat this rare form of cancer, and the survival rate was extremely low. Over the next two and a half years, I underwent surgeries, full head […]

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CAC2 Childhood Cancer Community News Digest (November 26-December 1)

Assorted News from the Last Week: Last week the FDA reported that it is investigating reports of blood cancers -- including life-threatening cases of myelodysplastic syndrome and acute myeloid leukemia -- in patients with early, active cerebral adrenoleukodystrophy (CALD) who were treated with elivaldogene autotemcel (eli-cel; Skysona). Cervical cancer deaths have plunged dramatically among women under age 25, and researchers at MUSC Hollings Cancer Center believe this is likely due to HPV vaccination. An international research team including researchers from Augsburg University Medicine has made significant progress in the risk assessment and treatment of extracranial malign rhabdoid tumors. Giselle Saulnier [...] Read more

CAC2 Childhood Cancer Community News Digest (November 18-25)

Assorted News from the Last Week: In conjunction with the European Medicines Agency (EMA), the FDA Oncology Center of Excellence (OCE) held a one-hour Conversations on Cancer public panel discussion to examine an array of challenging decisions faced by members of the pediatric oncology community. The panel discussion featured current CAC2 Board Member Nicole Scobie (Zoe4Life) and past CAC2 Board Member Donna Ludwinski (Solving Kids’ Cancer). Regular symptom screening in patients with pediatric cancer can lead to a reduced symptom burden, according to a pair of studies published in JAMA Pediatrics and JAMA Suicide rates for young male cancer survivors [...] Read more

Guest Blog–Conversations on Cancer – Pediatric Cancers: Navigating the Challenges Together

In conjunction with the European Medicines Agency (EMA), the FDA Oncology Center of Excellence (OCE) held a one-hour Conversations on Cancer public panel discussion on November 19, 2024, to examine an array of challenging decisions faced by members of the pediatric oncology community. The panel discussion featured current CAC2 Board Member Nicole Scobie (Zoe4Life) and past CAC2 Board Member Donna Ludwinski (Solving Kids' Cancer). Because of the rarity of cancers arising in childhood and adolescence and high unmet medical need, pediatric oncology drug development is inherently complex. As a result, pediatric oncology clinician investigators are faced with challenges related to [...] Read more

Reflections from International Cancer Week 2024: A Renewed Commitment to the Fight Against Cancer

By CAC2 Student Member Joshua Omale Attending the 2024 International Cancer Week, organized by Nigeria’s National Institute for Cancer Research and Treatment (NICRAT), was indeed a great a experience – one that I won’t forget soon. Under the theme “Accelerating Nigeria’s Path to Comprehensive Cancer Control: Innovation, Access, and Partnership,” the event brought together voices from all corners of cancer care, all driven by a shared mission to tackle cancer across Nigeria and beyond. It was both a learning experience and a reminder of the importance of collaborative efforts in advancing the fight against cancer. The discussions were powerful as […]

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CAC2 Childhood Cancer Community News Digest (November 11-17)

Assorted News from the Last Week: Electronic symptom screening in kids with cancer boosts quality of care. DIPG Research in Nature: brain tumor yields, in some young people, to CAR-T therapy. Plus a profile on Dr. Michelle Manje's approach to DIPG research (gated) Member blog post by Student Member Joshua Omale: "Reflections from International Cancer Week 2024" The NCCR Data Platform is the nation’s first data-sharing resource to link childhood, adolescent, and young adult records across population-based cancer registries and real-world data partners. The Data Platform links social drivers of health, pharmacy claims, and medical claims data, as well as [...] Read more

CAC2 Childhood Cancer Community News Digest (November 4-10)

Assorted News from the Last Week: Navigating gatekeeping challenges in pediatric and young adult palliative oncology and end-of-life research. Active participation by patients and families in studies helps identify more effective therapies that improve quality of life and survival. My daughter's diagnosis of a rare and aggressive brain tumor at 3 years old made me strongly consider whether or not to have her treated with radiation. Genetic and epigenetic bases of long-term adverse effects of childhood cancer therapy. Korean patients still waiting for access and insurance approval for Qarziba (dinutuximab beta), which was approved as therapy for treating high-risk and [...] Read more

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