UK HealthCare’s Post

Understanding DIPG Treatments: An Overview DIPG (Diffuse Intrinsic Pontine Glioma) is a rare and aggressive pediatric brain tumor. Navigating treatment options can be overwhelming, but this guide helps break the options down: Steroids: Because there is limited space inside the skull, any growth or swelling in the brain puts pressure on sensitive structures, which needs to be addressed. Steroids can help decrease cerebral edema (inflammation of the brain), and they’re often one of the first agents used to treat children with DIPG. Radiation Therapy: The cornerstone of DIPG treatment, radiation therapy utilizes high-energy x-rays to kill cancer cells and keep them from dividing. Photon radiation is the current standard treatment for DIPG. Radiation is considered palliative, not curative. About 80% of children respond to radiation, which prolongs life expectancy on average by 2-3 months. Radiation therapy comes with side effects, including radiation necrosis, which can be severe in some cases. Chemotherapy: Chemotherapy works by either killing cancer cells directly or by interfering with their growth. No FDA-approved drugs exist specifically for DIPG; however, many children receive different chemotherapy agents, especially as part of clinical trials. Clinical Trials: Participating in clinical trials can offer access to novel treatments and contribute to advancing DIPG research. Our national tumor board, consisting of esteemed DIPG doctors, helps match patients to the appropriate clinical trials based on each child’s unique situation. Surgery to Place a Shunt: Some children with DIPG will require a shunt, a surgically placed device to help manage hydrocephalus—the accumulation of cerebrospinal fluid in the ventricles of the brain from tumor growth and/or radiation necrosis, which causes increased intracranial pressure. Palliative Care: Integral to the treatment plan, palliative care focuses on enhancing quality of life through comprehensive physical, psychological, social, and spiritual support for the child and their family. Radiation and re-radiation are also considered palliative treatments. Why it matters? Understanding treatment options can empower families and caregivers to make informed decisions, ultimately leading to better care for children with DIPG. Call to Action: Please refer to the National Cancer Institute’s resources for detailed information. Together, we can make a difference in the fight against DIPG. #DIPG #ChildhoodCancer #CancerAwareness #PediatricCancer #ClinicalTrials #PalliativeCare #CancerResearch #NeevRonil #endDIPG #NKBR

The UAB Health System and Infirmary Health have entered a relationship to bring collaborative, comprehensive cancer services to patients in southern Alabama, Southeast Mississippi and the Florida panhandle. The result of a multi-year planning effort on behalf of the leadership of the two organizations, this partnership was born with the goal of decreasing the burden of cancer, improving outcomes, and expanding cancer scientific discovery through an increased footprint and resources of both organizations. “As Infirmary Health developed its cancer program, Infirmary Cancer Care, we wanted to have a meaningful and care altering partnership that would enable us to continue to offer the highest level of care for our patients,” said Mark Nix, President and CEO, Infirmary Health. “Collaboration and affiliation with the UAB O’Neal Comprehensive Cancer Center, one of the few National Cancer Institute designated Comprehensive Cancer Centers in the country, makes this goal possible, and we are confident our collaborative future with UAB will further our organization’s vision of being the first choice for healthcare in our region.” With the UAB O'Neal Comprehensive Cancer Center serving as the only National Cancer Institute (NCI)-designated comprehensive cancer center in Alabama and Infirmary Health as the largest integrated health system in South Alabama and along the central Gulf Coast, the blending of expertise, resources, and services between the two organizations will foster collaboration in clinical care, basic translational care services, prevention, and early cancer detection among existing and new patients. Read the full story --> infirmarycancercare.org

Timely diagnosis and stabilisation is the key to success in Immunology transplants! #BMT #PID #ImmuneDeficiency

Bringing Hope to Children with Brain Tumors: A Model for Low-Resource Settings Witnessing the struggles of children with CNS tumors in low-resource settings fueled my passion to develop this program. While challenges persist, seeing the positive impact on these children and their families motivates me to continue advocating for improved access to quality care. Link to Research 👉🏾 https://lnkd.in/d8bhGE_3 Summary: Central nervous system (CNS) tumors are the most common solid tumors in children globally, posing a significant challenge in resource-limited settings. We established the first dedicated pediatric neuro-oncology program in Uganda, aiming to improve suspicion, referral, diagnosis, and comprehensive care for these children. Our collaborative effort, involving Ugandan and international experts, trained 14 pediatric oncologists, strengthened multidisciplinary care and treated 121 children with brain tumors. While challenges remain, this model demonstrates the potential of innovative partnerships to improve outcomes for children with CNS tumors in low-resource settings. #pediatricneurooncology #healthdisparities #globalhealth #CNStumors #collaboration #Uganda #childrenshealth

In case you missed the town hall on March 12, 2024, click the link below to find out how this legislation could impact you and what steps you can take to support the bill’s journey through Congress. Data for Pediatric Brain Cancer Act of 2023 : A new bill in the U.S. House of Representatives that would establish a first-of-its-kind Pediatric Brain Tumor Real-World Data Registry Program. This virtual town hall recording is a must for anyone passionate about pediatric health, especially advocates, families directly impacted by ATRT and other pediatric brain tumors, and members of the research community. Coordinated through the Pediatric Brain Tumor Foundation and its supporters. Introduced by Reps. Ami Bera, M.D. (D-CA) and Mike Kelly (R-PA), this landmark legislation for the pediatric brain tumor community would boost researchers’ data collection efforts, establishing real-world data sets that can be used to accelerate new treatment discoveries and clinical trials. A pilot registry would focus on pediatric patients with atypical teratoid rhabdoid tumors (ATRT), exceedingly rare embryonal brain tumors that carry a poor prognosis for children. If successful, the program would expand to other types of pediatric brain tumors. You’ll hear from Rep. Bera; Harsh Patel, Rep. Bera's Health Policy Advisor; pediatric neuro-oncologists Dr. Michael Prados of UCSF and Dr. Ashley Margol of USC; Dr. Adam Resnick, Director, Center for Data-Driven Discovery in Biomedicine at CHOP; and Rachel Kreiger, patient mom, advocate and founder of Ollie’s Orchestra. https://lnkd.in/edc7x4sW

"🧠💪 Join us in learning about Pediatric CNS Tumors, a crucial topic in child health. Our latest post delves into the challenges of brain and spinal cord cancers in children, offering valuable insights into their diagnosis, treatment, and the journey of care. From understanding symptoms to exploring advanced treatment options, this guide is here to support families and caregivers navigating through this complex condition. Stay informed and empowered in the fight against pediatric CNS tumors. #ChildhoodCancerAwareness #PediatricCNSTumors #BrainCancerInKids #HopeForHealing 🌟👶" https://lnkd.in/gzqxeqXu

I'm happy to share our newest article, coming from my doctoral work. Arthur Frank, a Canadian sociologist, argues that when someone is diagnosed with cancer, the diagnosis irreversibly changes that person's story and sense of self, causing a "narrative wreckage". While your story becomes "shipwrecked by the storm of disease" (as stated by Frank), storytelling (and telling stories about your illness experience, or about who you were before your illness) can repair and reorient your story and sense of self into new terrain, to help generate a new story and sense of self for your life with (and hopefully after) your illness experience. In our paper, we extend on this conceptualization, arguing that narrative repair is not solely an individual process. Rather, we highlight that when a child is diagnosed with cancer, an entire family's story and sense of being has been shipwrecked, and that pediatric oncology nurses, in the proximity they have and relationships they build with these families, engage in narrative repair for the families. These nurses also further engage in narrative repair in their own moral identities, as their work often limits them from fully being the "nurse they want to be". I'm really proud of this paper - check it out if you like!

More exciting news from Natera!

The use of Shared Decision-Making models should be standard practice in every hospital and for all diseases. Another excellent article in Cancer World on the topic of SDM among elderly patients. Prof. Edgard Eeckman Marc Van den Bulcke Dirk Van Gestel Veronique Le Ray MD #cancer #cancerworld #shareddecisionmaking #patientempowerment https://lnkd.in/dWtj-Syb

The fascinating world of Hematology where scenarios from text book come alive daily in clinical practice is very rewarding. I speak to OncLive here to discuss the real world impact of drug development & outcomes impacting the field of childhood blood & cancer disorders at the annual American Society of Hematology meeting this week! . The field of Pediatric Hematology & Oncology is undergoing a shift with less subspecialty workers entering the field while at the same time novel cutting edge treatment modalities enter out toolkit everyday. Inventions in #genetherapy #immunotherapy for blood disorders have pioneered human use of these fascinating new age therapies and changed the face of the diseases like #hemophilia, #childhoodcancer, leukemia, #sicklecelldisease . https://lnkd.in/gsfFJPZh #hematology #globalhealthcare #training #oncology #clinicaltrials #geneediting #immunotherapy #medicine #pediatrictherapy #pediatriccancerawareness Oncquest Laboratories Ltd. American Society of Clinical Oncology (ASCO) American Society of Hematology National Heart, Lung, and Blood Institute American Society of Pediatric Hematology/Oncology (ASPHO) World Health Organization