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In this episode of the Cyber Uncut podcast, David Hollingworth and Daniel Croft talk about Chris Krebs' extraordinary decision to step down from SentinelOne in order to fight the Trump administration, an array of hacks both global and local, and the importance of funding the essential CVE Program. And China has made fascinating claims about US activity against the Asian Winter Games earlier this year. Hollingworth and Croft kick things off with Chris Krebs, who announced his resignation from SentinelOne this week following the signing of an executive order revoking his security clearance. He doesn't want to distract from SentinelOne's work, and he plans on taking this fight to the US government. Croft and Hollingworth then catch up on the week in cyber crime, with the 4chan message board getting hacked by a rival board, car rental giant Hertz Australia confirming it was caught up in a global Hertz data breach, and local outfit TMA Group of Companies falling victim to Sarcoma ransomware attack. The podcast wraps up with the pair talking about funding uncertainty involving the vital vulnerability-tracking CVE Program and how important the program is as a frontline tool against hackers and nation-state actors. Enjoy the podcast, The Cyber Uncut team
Ginny Curtin is living with sarcoma. She's not just surviving- she's thriving and sharing her perspective with fellow patients. This includes amazing adventures packed with incredible photography.
In this episode of the Cyber Uncut podcast, David Hollingworth and Daniel Croft talk about Chris Krebs' extraordinary decision to step down from SentinelOne in order to fight the Trump administration, an array of hacks both global and local, and the importance of funding the essential CVE Program. And China has made fascinating claims about US activity against the Asian Winter Games earlier this year. Hollingworth and Croft kick things off with Chris Krebs, who announced his resignation from SentinelOne this week following the signing of an executive order revoking his security clearance. He doesn't want to distract from SentinelOne's work, and he plans on taking this fight to the US government. Croft and Hollingworth then catch up on the week in cyber crime, with the 4chan message board getting hacked by a rival board, car rental giant Hertz Australia confirming it was caught up in a global Hertz data breach, and local outfit TMA Group of Companies falling victim to Sarcoma ransomware attack. The podcast wraps up with the pair talking about funding uncertainty involving the vital vulnerability-tracking CVE Program and how important the program is as a frontline tool against hackers and nation-state actors. Enjoy the podcast, The Cyber Uncut team
Featuring perspectives from Dr Rashmi Chugh and Dr Richard F Riedel, including the following topics: Other Connective Tissue Neoplasms — Dr Chugh (0:00) Sarcoma — Dr Riedel (28:16) CME information and select publications
Dr Bill Nelson talks with Dr Christian Meyer about being named the Johns Hopkins Hospital Physician of the Year and treating patients with sarcoma. Read more ➡️ https://bit.ly/3XFAt2R
Interview with Jade Homsi, MD
This featured podcast brings together 2 experts to discuss the care of patients with epithelioid sarcoma.
Send us a textDr. Alessandra Maleddu, MD ( https://www.uchealth.org/provider/alessandra-maleddu-md/ ) is a Medical Oncologist specializing in the care of patients with soft tissue and bone sarcomas at the University of Colorado Cancer Center.Dr. Maleddu treats patients with soft tissue and bone sarcomas, and she has a special interest in desmoid tumors (aka desmoid fibromatosis), as well as leiomyosarcoma and treatment delivery in the elderly population.Dr. Maleddu completed her training in Italy and the UK. She did her Sarcoma Fellowship at the University College London Hospital in 2020, her general oncology training at the University of Bologna and her MD from the University of Cagliari in Italy.Important Episode Link - https://www.desmoidtumors.com/#AlessandraMaleddu #MedicalOncologist #UniversityOfColorado #Sarcoma #DesmoidTumors #Oncology #Cancer #ProgressPotentialAndPossibilities #IraPastor #Podcast #Podcaster #Podcasting #ViralPodcast #STEM #Innovation #Science #Technology #ResearchSupport the show
Osteosarcoma Webinar Series: Sowmya Ramesh, PhD joins us on OsteoBites to discuss how multi-modal omics analysis identifies targetable sensory neuron circuitry that promotes sarcoma disease progression.Bone pain is a hallmark of bone cancers, including osteosarcoma (OS), mediated by skeletal-innervating peripheral afferent neurons. However, the roles of tumor-associated sensory neurons in OS beyond pain perception remain poorly understood. To investigate their regulatory functions, a chemical-genetic approach was employed in mice carrying a knock-in allele for TrkA to perturb sensory nerve innervation during OS growth and progression. TrkA inhibition in these transgenic mice significantly reduced sarcoma-associated sensory innervation and vascularization, altered tumor-associated macrophage polarization, decreased tumor growth and metastasis, and extended overall survival.These findings suggest that targeting pathological innervation in OS may serve as an adjunctive therapy to enhance clinical outcomes and survival.Dr. Ramesh is a postdoctoral researcher from the James lab at Johns Hopkins. The lab's research focus lies at the intersection of skeletal pathophysiology and stem cell biology. The lab looks at the interaction of nerves in various musculoskeletal repair including bone repair and regeneration, osteoprogenitor cell characterization, and neoplastic bone. Dr. Ramesh specifically works on understanding how peripheral nerves regulate osteosarcoma disease progression.
Introducing the latest wonderful Voice to share with us her experience of a chronic illness - Fiona G. Fiona was born with a rare (1 in 1 million) genetic disorder which causes an excess of tumours in the bones and tendons and has meant Fiona has had leg lengthening surgeries and debunking surgeries in her hands since the age of 4. Diagnosed at just 9 months old Fiona has only ever known a life with a chronic health condition and shares how the lack of mental health support as an adolescent impacted her as an adult. A really important and powerful interview discussing what disenfranchised grief is, how important it is to recognise the need for mental health support through a life changing diagnosis. Fiona's condition then changed and was diagnosed with Sarcoma and once again was reminded of her mortality and shares how she does live with a 'heightened realisation of what it is to be mortal' but that having her condition has given her values and taught her where to find joy.Thank you to Fiona for being another wonderful and honest Voice in the Scars of Gold campaign. Scars of Gold is a health awareness campaign sharing the voices of 100 women facing their mortality at a young age with life changing or incurable health conditions. Produced by the charity @mortalandstrong (No. 1209448)#podcast #podcastprevious #interview #mortalandstrong #scarsofgold #kintsugi #hope #pov #dr #drliz #drlizmurray #art #documentary #realvoices #mortal #womenshealth #healthmatters #healthadvocate #healthinequalities Hosted on Acast. See acast.com/privacy for more information.
U.S. lawmakers demand UK retraction of Apple backdoor Sarcoma ransomware claims breach at giant PCB maker Unimicron Ransomware attack disrupts Michigan's Sault Tribe operations Huge thanks to our sponsor, Vanta Do you know the status of your compliance controls right now? Like...right now? We know that real-time visibility is critical for security, but when it comes to our GRC programs…we rely on point-in-time checks. But more than 9,000 companies have continuous visibility into their controls with Vanta. Vanta brings automation to evidence collection across over 35 frameworks, like SOC 2 and ISO 27001. They also centralize key workflows like policies, access reviews, and reporting, and helps you get security questionnaires done 5 times faster with AI. Now that's…a new way to GRC. Get started at Vanta.com/headlines Find the stories behind the headlines at CISOseries.com.
What was thought to be a sprained ankle became a completely different situation for 10 year old Rachel Webster when she was diagnosed with Ewings Sarcoma. Rachel just turned 13 and is doing as well as possible after her battle and living as good of a life as she can. Her mom Marcy will talk about her daughter and the way that she has been able to overcome many obstacles as she now has No Evidence Of Disease.
In today's episode, we had the pleasure of speaking with Yvonne Mowery, MD, PhD, about the phase 2 SU2C-SARC032 trial (NCT03092323) investigating the addition of pembrolizumab to preoperative radiotherapy and surgery in patients with soft-tissue sarcoma. Dr Mowey is a physician scientist and an associate professor of radiation oncology at the University of Pittsburgh Medical Center Hillman Cancer Center in Pennsylvania. In our exclusive interview, Dr Mowery discussed unmet needs for patients with soft-tissue sarcoma that prompted the initiation of this research, key efficacy and safety findings from the trial, and potential next steps for investigating the treatment regimen in this patient population.
Raising awareness about sarcoma is essential to reducing treatment delays and preventing misdiagnoses of this rare cancer with over 100 subtypes. The Association of Cancer Care Centers (ACCC) is dedicated to providing up-to-date information on sarcoma management and the unique challenges associated with diagnosis and treatment in community settings. In this episode, CANCER BUZZ speaks with Richard Riedel, MD, professor of medicine at Duke Cancer Institute, to explore the critical resources needed for sarcoma care, including psychosocial support and the financial difficulties often faced by patients. Dr Riedel also discusses the future of treatment options in community-based settings and the importance of collaboration between community providers and academic/specialty centers. Additionally, CANCER BUZZ speaks with Katie Wintergerst, a sarcoma patient, who shares her personal journey and the challenges she encountered on her path to diagnosis. “It's critically important to partner with centers with disease-specific expertise, academic centers, for example, that are well-positioned to partner with community-based providers in providing optimal care for patients.” – Richard Riedel, MD “What I've had to become comfortable with ... is that clinical trials can be tricky and they can be scary, but in the world of sarcoma, there haven't been a lot of new products FDA-approved for treatment. Clinical trials is where the work is going on.” -Katie Wintergerst Richard Riedel, MD Professor of Medicine Duke Cancer Institute Durham, NC Katie Wintergerst Sarcoma Patient Resources: ACCC Sarcoma Resources for Providers and Patients SFA Clinical Trials Resource Center Sarcoma Treatment Centers
This DermSurgery Digest bonus content aptly named “At the Microscope” shares the latest research and techniques in dermatopathology. In this episode, we will review Atypical Fibroxanthoma and Pleomorphic Dermal Sarcoma. Contributors to this podcast include Naomi Lawrence, MD, Dermatologic Surgery Digital Content Editor; Ashley Elsensohn, MD, MPH, DermSurgery Digest at the Microscope co-host; Christine Ahn, MD; Jeff Gardner, MD; Marina K. Ibraheim, MD; and Michael P. Lee, MD.Articles Reviewed: Agaimy A. The many faces of Atypical fibroxanthoma. Semin Diagn Pathol. 2023 Jul;40(4):306-312. doi: 10.1053/j.semdp.2023.06.001. Epub 2023 Jun 23. PMID: 37438163. Link: https://pubmed.ncbi.nlm.nih.gov/37438163/ Ørholt M, Abebe K, Aaberg F, Rasmussen LE, Daugaard S, Loya AC, Herly M, Vester-Glowinski PV. Immunohistochemical Characteristics of Atypical Fibroxanthoma and Pleomorphic Dermal Sarcoma: A Systematic Review and Meta-Analysis. Am J Dermatopathol. 2022 Dec 1;44(12):913-920. doi: 10.1097/DAD.0000000000002305. PMID: 36395448. Link: https://pubmed.ncbi.nlm.nih.gov/36395448/van Midden D, Flucke UE, Amir AL, Bonenkamp JJ, Lubeek SFK, Blokx WAM. Atypical fibroxanthoma and pleomorphic dermal sarcoma: Is superficial infiltration in subcutaneous tissue acceptable in AFX? Ann Diagn Pathol. 2022 Jun;58:151915. doi: 10.1016/j.anndiagpath.2022.151915. Epub 2022 Feb 10. PMID: 35276548. Link: https://pubmed.ncbi.nlm.nih.gov/35276548/Anders IM, Schimmelpfennig C, Wiedemann K, Löffler D, Kämpf C, Blumert C, Reiche K, Kunz M, Anderegg U, Simon JC, Ziemer M. Atypical fibroxanthoma and pleomorphic dermal sarcoma - gene expression analysis compared with undifferentiated cutaneous squamous cell carcinoma. J Dtsch Dermatol Ges. 2023 May;21(5):482-491. doi: 10.1111/ddg.15006. Epub 2023 Apr 10. PMID: 37035902. Link: https://pubmed.ncbi.nlm.nih.gov/37035902/ Listeners are encouraged to submit questions for podcast hosts to answer in a later episode. To submit your questions, email communicationstaff@asds.net.
Host Dr. Davide Soldato and guests Dr. Suzanne George and Liz Salmi discuss their JCO article "Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality" TRANSCRIPT TO COME Dr. Davide Soldato: Hello and welcome to JCO's After Hours, the podcast where we sit down with authors from some of the latest articles published in the Journal of Clinical Oncology. I am your host, Dr. Davide Soldato, Medical Oncologist at Ospedale San Martino in Genoa, Italy. Today, we are joined by JCO authors Liz Salmi, Researcher and Patient Advocate, and by Dr. Suzanne George, who works as a Medical Oncologist at the Dana-Farber Cancer Institute where she acts as the Chief of the Division of Sarcoma. She is also Associate Professor of Medicine at Harvard Medical School. Today, we are going to discuss with Suzanne and with Liz the article titled, “Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality.” So thank you for speaking with us, Suzanne, Liz. Liz Salmi: Thanks for having us. Dr. Suzanne George: Yes, thanks. Dr. Davide Soldato: I just want to make a brief introduction because I think that the concept of patient partner research is very wide and I'm not sure that all of the readers of JCO really have a deep understanding because I imagine that there are a lot of ways we can involve patient and patient advocates in the research process. And so I was wondering if you could give us a little bit of an introduction about the concept. Dr. Suzanne George: Sure. I think the point that you raise is really important because there are many terms that are used, patient-partnered research, patient advocacy, but I don't think that there's a single definition as to what that actually means. In the context of our work, we've sort of summarized our experience through something called the PE-CGS or the Participant Engagement and Cancer Genome Sequencing network. And in that project, which is a Moonshot funded network, the intention is to have participants in research be true partners working with traditional academic research teams in order to develop networks specifically focused on cancer genomics. So what we've done, every center is a little bit different in the network, but we're really having research participants not just act, but really work on the research team from the beginning of the project inception all the way through the research project. Liz Salmi: What brings me to the PE-CGS network is my 17 years experience as a person living with a low grade glioma, brain tumor or brain cancer and involving patients in the co-design of research is super critical because patients bring unique lived experiences that can shape research questions, study designs and outcome measures in ways researchers might not anticipate. And we're finding this through our network. So through my work, including my patient experience and brain tumor focused study designs, I've seen firsthand that patient insights can drive more practical implementations that ultimately benefit both patients and the researchers. And so the particular project I work on in the network, we've got like five different arms and different groups of cancer types that are being represented, so I'm basically focusing on the OPTIMUM study around how brain tumor patients can help in this study design. So in this project I serve as not just a participant in the research, but also as a patient co-investigator. Dr. Davide Soldato: That is very interesting. And I think that we really captured the essence of patient-partnered research by having both of you here talking with us about the PE-CGS. And the second question that I wanted to ask is: I really think that the network focuses on something that is quite important right now and currently in medical oncology - so cancer genome sequencing, access to novel therapies - and I think that it's really challenging to imagine a way in which we can really get our patient and get patient advocates to help us designing new trials who are looking into this. And I just wanted to know, do you think that there is something that is particularly challenging when we are speaking specifically about cancer genomics and access to this type of drugs that are targeting specific molecular alteration? Because I think that in general it might be a little bit easier, maybe I'm biased on this, so you can also tell me if I'm wrong, but I think that it's a little bit easier when we are trying to design, for example, behavioral intervention or things that are more commonly found in oncology and a little bit more complicated when we are speaking about genomics. Dr. Suzanne George: So I think that's part of what this network is trying to address, which is really what are the barriers and the opportunities around cancer genomics from the patient perspective and how do we make sure that that perspective is included as we're thinking about study design and inclusion? As Liz mentioned, this network has five different networks within the network, five different centers, and each center is slightly different with the population that it engages with. And so there's diversity there in terms of reaching out to different patient communities and partner communities around potential barriers for genomics research. I think one of the things though that we're finding across the network is that people want to be part of this work. People that have a lived experience of cancer want to help move the field forward. And what we ended up writing about was some of the barriers that get in the way of that. It's awesome to have people like Liz that are like all in and then there's people who are on the other end of the spectrum that want to share their information to help move the field forward around genomics, but then there's all these barriers at the systems level that get in the way of that. So I think that that's one of the challenges we're trying to overcome and learn about across the network. Liz Salmi: Yeah, I think I bring this really interesting, I can't say I'm really interesting, but I think I bring this really niche perspective. Not only am I a person living with a brain tumor and I'm a co-investigator but also like a participant in this study. I also, in my day job, I'm an investigator as part of the director of communications and patient initiatives on the OpenNotes lab at Beth Israel Deaconess Medical Center. And our lab really focuses on how open, transparent communication between doctors and patients improves care. And that's been going on for longer than I've been around on our team. But what I bring to that lab is I focus on engaging both patients and clinicians in spreading the awareness about the power of how easy access and transparent communication, access to information across healthcare settings helps patients feel more involved and informed in their care. And I work specifically, it's a really niche area. I work on projects that aim to expand access to notes and test results in diverse care settings, really helping tailoring initiatives so that various patient communities can understand how they can be involved in these types of research projects. Ultimately that's what brought me into this space. I might be one of the first generation of patients that actually starts helping co-design studies on things like this. And I think that across a lot of healthcare settings cancer is really what we're focused on. But patients are now increasingly being involved as research collaborators. And there's many different funding institutions such as the NCI but also PCORI they now mandate that funders reflect a shift towards more patient centered research frameworks. So it's like the PE-CGS network isn't the only group that's being funded to do research in this way. And I think other investigators, even outside of the cancer space, but specifically in cancer, need to learn how to do research in this way. Dr. Suzanne George: Yeah, I agree. And I think the other thing that we need to do is if people want to participate and that participation in many of these networks has to do with record sharing and data sharing, the system needs to accommodate that. If people want to share their information in order to allow research to be performed, then we need to make sure that that can happen, and that it's not that the institution systems don't connect with someone else's systems or that you to pay X, Y and Z dollars for the data to go A, B and C, or that some places are on this EHR and some places are on that EHR and so, sure, you can share it, but you have to go through all of these hurdles in order to make it happen. When a patient signs a consent form that says, “I want my data to be used,” we as an investigator community, we owe it to that patient to make sure that their information is being part of the data set that will be used for learnings. And that's part of what we wrote about, is the lots of behind the scenes things that just get in the way and that we need to work towards improving. Liz Salmi: Both Suzanne and I are really passionate about this stuff. And as a person living with a brain tumor for the last 17 years, I'm a chronic research participant. I always, always, am really curious. I'm like, “Yes, let me contribute my data. Whether that's electronic health record data or maybe I'm being interviewed about certain aspects of the cancer care experience.” And the one thing that bummed me out for like the first 10 years of being this chronic research participant is I would enroll in things, I'd be interviewed for things, I'd fill out these surveys and then I never heard anything about what happened with that information and that time I spent. And people would send me like a $10 gift card to Amazon, like, “Thanks for participating,” but really what I wanted to know is like, did you do anything with that? How did that inform things? So that really annoyed me to the point where I was like, I'm just going to be part of the research process and really figure out how we share that information back to everybody who had spent so much time. And so my participation in this space is like, “Let's change it. Let's give people information back.” And now I know it takes a really long time to have a finding that could be published somewhere that we then get it back. But closing the loop on the communications gap is something I'm really passionate about. Dr. Davide Soldato: Do you think that we are changing a little bit this perspective? I feel like we are getting a little bit better in creating patient communities of patients who are included in specific clinical trials. And then we do the effort of creating a community, of keeping people really involved with the research that they are participating in. I think that we are not quite there yet, but I think that we are making some kind of steps in that direction. For example, trying also to inform patients to participate in the study when the publication that is related to that specific study comes out. What is the benefit? What have we discovered? I think that we are not quite there yet. There is a lot of room for improvement, particularly in the way I think we communicate these to patients who participated in research. But I have the impression that we are making some steps forward. So I don't know. Do you share the same thoughts? Liz Salmi: So Dr. George talked about the PE-CGS network and then there's five different cancer types being studied. So the thing I can reflect on is what we've done in the, this is a really long acronym but, Optimizing Molecular Characterization of Low Grade Glioma. Say that 10 times fast. So our particular group is people who donate tissues about their brain tumors. We're really collecting data from people with multiple brain surgeries over time, which is really complicated and to make that process easier. And then once those tissue samples are stored somewhere, studying that information about what changes in the brain tumors over time and then also giving those results back to people so they can take that research level data and bring it back to their neuro oncology team and say, “Hey. Here's what I found out, “and having a conversation. So, this is a long multi touch point study and in order to do that, to even make that possible is the individual patients need to understand what's in it for them. They're donating precious tissue in order to make the research process work. And so in order to do that, it's not just the investigators saying, “Hey. Give us your brain tissue, peace out.” It is we have a whole research advisory council of people living with these particular tumor types who help us co-design how do we do that outreach, how do we explain why this is important, or how do we message the importance of this work so they understand,“Oh, this is what's in it for me and this is what's in it for other people like me.” And from there then with that process, which again I mentioned, all of these multi-step processes, once we're able to understand how patients want to hear that information, what's in it for them, then we bring it back to like those bench scientists, investigators going, “Okay. And here's how this workflow should work for the patients,” and design everything around the patient experience before we even care about what's happening from the scientist researcher perspective. Dr. Suzanne George: I agree. I think to your point, I think the fact that we're all here today talking about this is just like you said, is that we are making progress, right? Like we're even here having this conversation. Just like you said, I think there's opportunities to improve and further refine the communication and the involvement back in the patient community. When I think- if I put on my clinical investigator hat, I'm very involved in PE-CGS, but my primary research interest historically has been clinical trials and drug development. And I think that our approach in communicating results back has just not been consistent. But I do think that there's opportunities, just like you said, to provide summaries of information to loop back. I don't think that we've completely solved: What do we do? How do we provide information back to loved ones of patients that may no longer be alive that participated? How do we provide information to people who maybe we don't have their contact information? What if we lose track of them? How do we also make sure that we give people the choice to know? Do you want to know about this or would you rather just participate and then give space to that research? Because maybe that's how people's best for them. So I think that you're right, we're making progress, but I think that there's also a lot more that we can do. So I'm glad we're talking about it. Dr. Davide Soldato: How much do you think that directly involving patients in this process, like asking them directly and co-designing the trial from the very beginning and understanding the level of information? This might also be another question inside of the question. So first, how much co-designing this type of research helps, and then do we also need to further refine at that level of communication, different communication depending on the level of information that different people want to have? Because I think that that's another level of complexity that we need to work towards at a certain point. We need to work on that first level of giving back the information. But then I think that there is also the other point of providing the information and information that should also be probably adapted to the cultural belief of different patients, to the ethnicity or to whatever cultural background or social background or whatever they may place their most interest in. Dr. Suzanne George: So I think that you're 100% right on all of those points. I think those are all topics that need to be considered. We may be able to get to a certain degree of granularity around those communication points, but on the other hand, we also want to be able to communicate broadly and accessibly as possible. One of the interesting things about PE-CGS, as Liz was mentioning, is each of the five centers has a slightly different focus. For example, one of the centers is focused on American Indians and Tribal Nations, and the communication practices coming out of that center are really unique and really very special and something that's been really, I think for me, very fascinating to hear about. Because to your point, like, just the strategy and what's considered appropriate is just different. I think if we hope to build a research world where our research participants and research data come from a broad swath of the population that really represents the population, the only way that we're going to be able to do that is find ways that bring meaning across the population as well. And that may be different based on where people are coming from and where people are at in their own journeys and in their own lives. But it's on us to be open to that and like to hear that, so we can do the right thing. Dr. Davide Soldato: And I think that this is one of the objectives of the PE-CGS, really trying to bring this type of research participation to really diverse and underrepresented populations, not only in terms of cultural background, but I also think about different types of tumors. Like Liz was referring about brain cancer or low grade glioma, which is a very niche population. And I also think about sarcomas, for example, the degree of variability that we have in that specific type of disease is such that we really need to probably find different ways to communicate also inside of this diversity in terms of single patient and experiences, but also in terms of single diseases. You were speaking a little bit before about the fact that the manuscript is really on the barriers that we would need to identify and then to change to make this system a reality. We were talking a little bit about consenting information and consenting the sharing of information, and I think that you make a very interesting point about the consent process when we are designing research. Could you give a little bit of your impressions about giving informed consent? What we need to change, how can we improve? Dr. Suzanne George: The bottom line is the consent process needs to be simple, clear, and transparent. And sometimes I feel, because the traditional way that we've always gone about consent is frequently consent is as it should be in many ways. These consent forms are developed from a regulatory framework. What are we required to do to consent and how do we meet those requirements? Sometimes that becomes directly at odds with how do we do this simply, clearly and transparently? And I think as a research community, we have to be able to find a common ground there. That has to include regulatory requirements, that has to include IRBs. When we think about consents and work with our patient communities on this, everybody agrees the consents need to be more simple, except the IRB or maybe the IRB agrees, but it's this tension between how do we make it simple, clear and transparent and not get so bogged down in the regulatory that we lose that intent. Liz Salmi: It's complicated. As a person, I mentioned, I'm a chronic research participant living with a brain tumor for 17 years. I remember enrolling in studies and seeing things that are just so complicated. I'm like, “Well, I'm just going to sign off.” I imagine somewhere somebody who knew more than me said, “I should just fill out this thing.” And then as I switched to the research world, I spent more time digging into, “Wow, this is a really complicated consent,” versus, “This is a really streamlined consent and I love this.” And throughout my work with Dr. George and others on the PE-CGS network, an example of a good consent that's easy for people to understand is what the NIH All Of Us research project did, where they're trying to get a million people, more than that, signed up to be in this longitudinal study. And their consent is to go to their website and they have a whole bunch of short YouTube videos. There's a kind of like a quiz involved and they're animated, they have multiple languages involved. And I signed up for that study and I was like, “This is a beautiful consent.” And it's a very plain language. And more consents like that. If you're looking for a good example, go there. I have not been paid by them in any way. I'm a participant in their study. I'm not sure if you guys and your listeners are aware, but there was I think, October 19th of this year or 2024, there was a special communication published in JAMA on an update on the Helsinki Principles for Medical Research involving human participants. And what they're saying is an ethical update is patient engagement in research, which emphasizes the need for continuous, meaningful engagement with research participants and their communities throughout the research life cycle, before, during and after studies. And so this is what we're talking about here. And it's now been embedded in these updated principles. Dr. Suzanne George: That's really great and I agree with you. I think the All Of Us consent process is very accessible. It feels like you can understand it. But the other thing is that, again, I also am not directly involved with All Of Us, but the other thing about it is that they also have a high-touch way to consent where they have navigators and people that will go into communities in a very resource intensive way. So there's all different ways to go about it. We need to find a way that we can balance the complexity around regulatory and the simplicity and transparency that we need in cancer research. Dr. Davide Soldato: Do you think that in terms of patient engagement we are doing better in academic sponsored research compared to sponsored research? A little bit of a provocative question maybe. Dr. Suzanne George: I think that's a really interesting question. I think this idea of participant engagement and involvement is being infused across the research community. And in part, the FDA has prioritized it as well. I think the industry sees the FDA prioritizing this as well. And I think that there are many companies that are involving participant and advocacy communities in different ways in the study design, in the study process early on. So I think it's happening. Liz Salmi: I'll be spicy. I've been a participant, I've been an investigator, co-investigator on studies and I have been reached out to often by pharma of, “Hey Liz, brain tumor patient advocate, would you be kind of like the poster child of our study or be involved in that way?” And I personally want to have no work in that space. I have no interest. However, I am approached, and other people living with cancer have been approached, by industry about lending their likeness or being commercials. And I don't think there's enough education to patient advocates of what that necessarily means, pros and cons. But I also can't speak on behalf of all of the patient advocates who might want to see that's a way that they could lend their voice and advance research. I personally think that there needs to be more involvement from the academic side of creating spaces where patients can be involved in the co-design of research and they also get compensated for their time fairly at the same level or some version of it in a way so they don't just jump to the pharma side of things. But that's an opinion that I have. Opinions. Dr. Suzanne George: I think it's really interesting the point that you make about providing more awareness or information about what it even means to do these things from a patient side. I certainly don't know that side as well, but I do see, often, the term patient advocate used very frequently in many different contexts that mean many different things. And I think that there's an opportunity there for understanding more about what that really means and what it can mean. Liz Salmi: Yeah. We want to involve patients, we want to do patient engagement. The BMJ or the British Medical Journal, have this new policy in place for patients as reviewers of research. And what I find interesting with the BMJ is they also ask patients to declare their conflicts of interest. So this is kind of a new space. If you're involved in patient research or perhaps working with pharma, patients, if you're involved at that level, should also be declaring their conflicts of interest if they're getting paid by a pharma. Or do I have a conflict now that I'm doing this cool ASCO podcast? Maybe. But do we want to overburden patients with tracking all this information? So it's a new world. The more we have access to information, the more we share information, the more we can read studies and we co-design, there's a new space I think over the next 5 to 10 years where how do we define this in a transparent way. Dr. Suzanne George: Yeah, I think you're right. I know that we're getting long, but I just want to say one other thing about that, which is that you're right. If we're bringing patients in to be partners, then we have to treat each other that way. We have to acknowledge- I think this issue that you raise about compensation and about paying people for their time or acknowledging people for their time, I think that's really important and very under-discussed. Liz and I were at the annual meeting for the PE-CGS and someone was there giving a talk about- this was a guest speaker that was giving a talk about a very large high impact grant and that included a patient advocacy kind of module, let's say. And they put in a specific funding and budget for that component that included compensation for the people- from the people in the advocacy community that were spending their time. And the PI of this project, again, not to get into the details of it, but they were sharing that they got a fair bit of pushback on that. But the PI pushed back and said, “Listen, we're compensating other people for their time. These guys, we want them to be partners, we need to treat them as such.” And I think that also again, kind of we're in a new space, but if we're going to do it right, then we have to acknowledge that we're partners. Dr. Davide Soldato: But I think that maybe an experience like the PE-CGS probably can be also a network for expanding awareness for patient advocates and also for creating sort of a new culture about what does that mean and how can we also improve on that part. Because in the end, if we want to engage, we also need to provide patients with the instruments to engage in a way that we think it's both useful for them, that can make research better, but can also make them at the exact same level as everyone who is participating in that research, which I think it's the bottom line of all the concepts that we are discussing right now. Liz Salmi: Yep. Dr. Suzanne George: Yes, I agree. Dr. Davide Soldato: So I think we have covered a lot of things. Just wanted to make one last reference to a point that Suzanne mentioned earlier, which is the interoperability of systems. And I think that when we come to the cancer genome, that is very important, being able to share information, especially for those diverse and less common cancer types that we were discussing earlier. There is a lot of work in gaining all that information and we need to be able to gather all of that information in the same place to advance research. You were mentioning before that the process is actually very complicated and I was wondering if in the network you are already working on some potential ways to address this type of issue. Dr. Suzanne George: I think our first step is really just calling it out, acknowledging how hard this is and what the barriers are. Oftentimes I think in research, we don't talk enough about what our methodologic barriers are. We talk more about what our results are, but not like how hard it is. But like in our projects, the Count Me In project, my network that I'm involved with, we're doing rare tumors. We can only do the United States and Canada because of privacy issues. And we're doing a completely web based platform. So we have the technology. But the privacy laws are impeding our ability to involve other parts of the world. And even within the United States, it's not as easy as we would like to get records. For example, despite the fact that people are saying, “Yes, use my records.” But then it's like, “Okay. Well, that's not that easy. How are we going to get them?” We had to hire a third party vendor in order to get the records, in order to manage all the different consents and releases that were needed across all these different hospital systems. So I think the first question is just calling it out and then from there working together as a community to try to see what the solutions can be, because we need to come up with those solutions. Liz Salmi: Yeah, we're in the same camp as Dr. George and the fact that of the five partners, we're not associated with one particular institution. So we can reach out around the country and get access to those records. And we need them at multiple points in time, over time and it takes a lot of effort and work. And it's not like you could just, say, call hospital A and they have all the information. It's like all of the calls to all of the other sites. And it's not just from one surgery, it's from two or more surgeries. But also the way that people stay involved, and, by people, I mean patients and family members, there's this promise that at some point you're going to get some sort of information in response. Like, it's the “what's in it for me?” aspect of it. We do interviews with those who've been enrolled in the study, those who could be potential enrollees in the future because they've only had one surgery. And what we're learning overall is there's this altruistic nature that people have of- they want to participate in the research because they're like, “Here's my horrible cancer experience. I know other people are going to go through this as well.” There's this guiding light of “I want to do something, and I'm not going to be the person that creates the cure, discovers the genome or whatever for this particular cancer type. But my little bit of participation in this multiplied by 20, 30, 100, 1000 people, is what is going to lead us to the next phase in development and is going to move the needle for this particular tumor type or other cancer types.” And so what I think the impact in this space and participant engagement isn't just something we figure out, like a little research method and a little finding for one small tumor type, it's like the methods to do that is the big impact. The method around participant engagement can impact even beyond the cancer community. Dr. Davide Soldato: Yeah. As Suzanne was saying, we need to be in a system that really helps us and allows us to do that. So I think that you really have a lot of things to work on inside of the network. Dr. Suzanne George: I think one thing that I would say is I think that this issue of interoperability is acknowledged as a challenge. We refer to several different initiatives across the US where this is supposed to ideally change over time. I think people want it to change over time. I think investigators at the ERTC want it to change over time. I think different countries are working on this. And I think, again, the first step is getting us at the table talking about it, and then figuring out ways to move it forward. And I think it's there. I think that there is the will. We just have to figure out the how and continue to work on that together, because there's just a tremendous opportunity. I live in the rare tumor space, and between the FDA and the EMA and the regulatory, the national and the international research groups, the patient communities, people want this to be solved and I do hope that we will be able to get there. Dr. Davide Soldato: So I would like to thank Liz and Suzanne for joining us today. Dr. Suzanne George: Thanks for having us. Liz Salmi: Thank you. Dr. Davide Soldato: Suzanne, Liz, we appreciate you sharing more on your JCO article titled, “Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality.” If you enjoy our show, please leave us a rating and a review and be sure to come back for another episode. You can find all ASCO shows at asco.org/podcasts. The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. DISCLOSURES Liz Salmi Speaking Honoria: Medscape. Research Funding (Inst): Abridge AI, Inc., Yosemite. Dr. Suzanne George Honoraria CStone Pharmaceuticals Consulting or Advisory Role Blueprint Medicines, deciphera, Bayer, Lilly, UpToDate, Research to Practice, MORE Health, Daiichi, Kayothera, Immunicum, BioAtla Research Funding Blueprint Medicines, Deciphera, Daiichi Sankyo RD Novare, Merck, Eisai, SpringWorks Therapeutics, TRACON Pharma, Theseus Pharmaceuticals, BioAtla, IDRx, NewBay Pharma, Acrivon Therapeutics Patents, Royalties, Other Intellectual Property Company name: UptoDate Stock and Other Ownership Interests Abbott Laboratories and Pfizer Recipient: An Immediate Family Member
For many, the holiday season is celebrated through music. Minneapolis musician Ben Cook-Feltz wrote an entire album to celebrate with. In one song, he pays tribute to frosty nights, meals with loved ones; in another, he hypes up Christmas vacation. He will celebrate Sunday with his fourth-annual “Holiday Shindig” at the Cedar Cultural Center.The celebration has a special meaning for Ben: he is a childhood cancer survivor and is donating proceeds from the event to Rein in Sarcoma, an organization that benefits people with sarcoma, a rare bone and tissue cancer. He joins MPR News host Nina Moini to share some of his music.
Breakthroughs in the Treatment of Sickle Cell Disease with guest Dr. Cece Calhoun, December 1, 2024
Welcome to Season 2 of the Orthobullets Podcast. Today's show is Core, where we review Core Knowledge for Orthopaedic Surgeons. This episode will cover the topic of Synovial Sarcoma, from our Pathology section at Orthobullets.com. Follow Orthobullets on Social Media: Facebook Instagram Twitter LinkedIn YouTube
FDA Drug Information Soundcast in Clinical Oncology (D.I.S.C.O.)
Listen to a soundcast of the 8.2.2024 FDA approval of Tecelra (afamitresgene autoleucel) for unresectable or metastatic synovial sarcoma.
#sarcoma #sarcomaawareness #cancer #roadtothegiveback Copyright Disclaimer under Section 107 of the copyright act 1976, allowance is made for fair use for purposes such as criticism, comment, news reporting, scholarship, and research. Fair use is a use permitted by copyright statute that might otherwise be infringing. Non-profit, educational or personal use tips the balance in favour of fair use. It's a very special episode of @rawrrzonenyc drops recapping the recent Road to The Giveback with @titanofrap and @djaceofspades and having a real conversation about Sarcoma with our friend from #Philly @kelly_blue22 Catch music from @therealtywizz @thenoellekay @qwilliams_m.o.c.a @joshbantonn @sp_theartist @ariasoulz @itsraypearson @reggielanez @titanofrap Tune in on our Website / YouTube / Twitch tomorrow night 8pm www.rawrrzonenyc.com tune into our shows @officialinthehouseshow with @_theotherday_ @johnnybaboon @luisbordoyactor @mannyhitemwitit Gorilla Talk Podcast with @iamivy.xo_ and @itsraypearson Catch Rawrrzone on these days @elginsoundradio Tuesdays 8pm EST on the @live365official app https://live365.com/station/El-gin-Sound-Radio-a19625 @puso82.3fm Wednesdays 8am EST on the @live365official app and @villageglobalnetwork https://live365.com/station/PUSO-82-3-FM-a88820 Wanna submit your music for our show email us at mnrawrrbookings@gmail.com Support our Giveback for Shawn by making a donation below https://www.gofundme.com/f/give-back-for-shawn Our last stop for the year is December 7 at @brooklynmusickitchen hosted by @candy_solidcircle and @titanofrap music by @djaceofspades Follow us Katie / Ivy Twitter / Instagram / Tiktok : @iamivy.xo_ Katie Kay Photography www.katiekayphotography.com www.facebook.com/photosbykatiekay https://www.instagram.com/katiekay_photographyxo Ivy Productions Twitter @ivyproductions1 https://facebook.com/ivyproductions Follow Rawrrzone Everywhere https://linktr.ee/Rawrrzonenyc Tiktok @rawrrzonenyc Check out our Rawrrzone Picks https://open.spotify.com/playlist/22uou4E2jqStyU3vVJzLgU?si=5GYOHhVoT9a5P1qsUd5JaQ&app_destination=copy-link&pt_success=1&nd= #podcast #podcasting #podcastersofinstagram #podcasts #spotify #podcastlife #podcaster #music #youtube #radio #comedy #hiphop #applepodcasts #love #podcasters #podcastshow #itunes #spotifypodcast #newpodcast #interview --- Support this podcast: https://podcasters.spotify.com/pod/show/rawrr-zonenyc/support
#sarcoma #sarcomaawareness #cancer #roadtothegiveback Copyright Disclaimer under Section 107 of the copyright act 1976, allowance is made for fair use for purposes such as criticism, comment, news reporting, scholarship, and research. Fair use is a use permitted by copyright statute that might otherwise be infringing. Non-profit, educational or personal use tips the balance in favour of fair use. It's a very special episode of @rawrrzonenyc drops recapping the recent Road to The Giveback with @titanofrap and @djaceofspades and having a real conversation about Sarcoma with our friend from #Philly @kelly_blue22 Catch music from @therealtywizz @thenoellekay @qwilliams_m.o.c.a @joshbantonn @sp_theartist @ariasoulz @itsraypearson @reggielanez @titanofrap Tune in on our Website / YouTube / Twitch tomorrow night 8pm www.rawrrzonenyc.com tune into our shows @officialinthehouseshow with @_theotherday_ @johnnybaboon @luisbordoyactor @mannyhitemwitit Gorilla Talk Podcast with @iamivy.xo_ and @itsraypearson Catch Rawrrzone on these days @elginsoundradio Tuesdays 8pm EST on the @live365official app https://live365.com/station/El-gin-Sound-Radio-a19625 @puso82.3fm Wednesdays 8am EST on the @live365official app and @villageglobalnetwork https://live365.com/station/PUSO-82-3-FM-a88820 Wanna submit your music for our show email us at mnrawrrbookings@gmail.com Support our Giveback for Shawn by making a donation below https://www.gofundme.com/f/give-back-for-shawn Our last stop for the year is December 7 at @brooklynmusickitchen hosted by @candy_solidcircle and @titanofrap music by @djaceofspades Follow us Katie / Ivy Twitter / Instagram / Tiktok : @iamivy.xo_ Katie Kay Photography www.katiekayphotography.com www.facebook.com/photosbykatiekay https://www.instagram.com/katiekay_photographyxo Ivy Productions Twitter @ivyproductions1 https://facebook.com/ivyproductions Follow Rawrrzone Everywhere https://linktr.ee/Rawrrzonenyc Tiktok @rawrrzonenyc Check out our Rawrrzone Picks https://open.spotify.com/playlist/22uou4E2jqStyU3vVJzLgU?si=5GYOHhVoT9a5P1qsUd5JaQ&app_destination=copy-link&pt_success=1&nd= #podcast #podcasting #podcastersofinstagram #podcasts #spotify #podcastlife #podcaster #music #youtube #radio #comedy #hiphop #applepodcasts #love #podcasters #podcastshow #itunes #spotifypodcast #newpodcast #interview --- Support this podcast: https://podcasters.spotify.com/pod/show/rawrr-zonenyc/support
Carley Rutledge went through much of 2010 in pain but not getting any correct answers about the cause of this pain for most of that year, until she received the shocking diagnosis of Ewings Sarcoma. Carley went through 2 years of difficult treatment and then was given an immunotherapy drug that worked and she experienced 8 years of being cancer free from this form of Pediatric Bone Cancer. Always active and with many accomplishments, Carley then felt back pain during her run in a Half Marathon which unfortunately indicated her Ewings Sarcoma had relapsed, and this led to her passing in November of 2021 at the age of 27. Carley's mother Laura will talk about her beloved daughter and about her family's Rutledge Cancer Foundation on today's podcast.
Welcome to the Orthobullets Podcasts. Today's show is Total Recall, where we review all of the highest yield points for anyone studying for the Orthopedic in Training Exam or part one of the ABOS Board Exam. Today's episode will cover the topic of Synovial Sarcoma from the Pathology section at Orthobullets.com. Follow Orthobullets on Social Media: Facebook Instagram Twitter LinkedIn YouTube
2024 is the year today's Raise the Line guest, Michelle Hughes, is supposed to die. That's according to the diagnosis she received three years ago from an oncologist who told her she had a rare, incurable form of cancer that had already caused innumerable tumors throughout her body. As a mother of three – with her youngest child being just a few weeks old at the time of her diagnosis – this was obviously devastating news. But fortunately, the optimism and encouragement of a second oncologist allowed for a new path forward. “It changed my entire world when that one doctor had hope,” she tells host Lindsey Smith.Fueled by the advice of her new doctor “to just live your life” Michelle embraced a healthy lifestyle that includes distance running, including a recently completed triathlon. She has also embraced the role of empowering others to face their challenges through “My Journey to Just Live” an organization she created that keeps her busy doing a blog, social media posts, speaking engagements fundraisers and other activities. Join us for a special edition of our Year of the Zebra series focused on rare diseases to learn about Michelle's challenging journey to motherhood, being a parent to three young children, and living with terminal cancer. “I remind my children and myself that cancer doesn't define me. I'm so much more than that.”For information on the November 16th online premiere of a documentary about Michelle's story, visit My Journey to Just Live
Welcome to Season 2 of the Orthobullets Podcast. Today's show is Foundations, where we review foundational knowledge for frontline MSK providers such as junior orthopaedic residents, ER physicians, and primary care providers. This episode will cover the topic of Soft Tissue Sarcoma, from our Pathology section at Orthobullets.com. Follow Orthobullets on Social Media: Facebook Instagram Twitter LinkedIn YouTube
Artificial intelligence continues to gain popularity as society identifies its uses and benefits. AI has shown promise despite being in the early phases of implementation in sarcoma care. For this episode we discuss Artificial intelligence, its present and the future in sarcoma care. Bozzo A, Tsui JMG, Bhatnagar S, Forsberg J. Deep Learning and Multimodal Artificial Intelligence in Orthopaedic Surgery. J Am Acad Orthop Surg. 2024 Jun 1;32(11):e523-e532. Bozzo, A., Hollingsworth, A., Chatterjee, S. et al. A multimodal neural network with gradient blending improves predictions of survival and metastasis in sarcoma. npj Precis. Onc. 8, 188 (2024). sarcomaAIhub.com Find out More about our Doctors: Dr. Izuchukwu Ibe: www.linkedin.com/in/izuchukwu-ibe-a073537a/ Dr. Elyse Brinkmann: www.linkedin.com/in/elyse-brinkmann/
In this episode Mo sits down with 2 time cancer survivor and Army Veteran, Alanzo to discuss his life story & his experience navigating life after being diagnosed with one of the rarest forms of cancer Synovial Sarcoma. Tune In!
With a special focus on desmoid tumors, he dives into the latest treatment advancements and their implications for patient outcomes. Dr. Philip brings a wealth of expertise, having served with organizations such as the American Society of Clinical Oncology, the Connective Tissue Oncology Society, and the American College of Physicians.As an Assistant Professor at the Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Dr. Philip has a solid foundation in hematology and oncology, having completed his fellowship at North Shore-LIJ. His robust background in sarcoma management positions him to provide valuable perspectives on improving patient care in this complex field.
Get in the Halloween spirit with OsteoWarriors Mia, Sammy, Gillian, MacKenzie, and Matthew who share spooky stories from their osteosarcoma treatment experiences. Find out why being diagnosed with osteosarcoma is like entering the Twilight Zone where things may seem normal, but weird and random things lurk. Hallucinations, disorientation, and delirium can be common side effects from pain and supportive meds during treatment, making it difficult to discern reality from fantasy. You will cringe and cackle at the haunting stories of pain meds gone wrong, from dreams filled with housework to a little man constantly appearing in the hospital room, to mysterious screams from behind a curtain. And you may even get some ideas for clever Halloween costumes.
Robert and Melanie Ham were young, with two young children when Melanie was diagnosed with an incurable rare form of Sarcoma in 2020. Robert, an award winning film maker and military veteran, decided he wanted to document her journey, their love, to help others. The documentary aired in 2022 after Melanie's death and has been viewed more than 1 million times on YouTube. Robert knew that a part of his grief journey included finding a way forward for himself and his children. That mean, not giving up on love and the lessons it teaches us. Enter Brooke. Brooke had been battling her own hard grief journey after her marriage ended in divorce. With two children of her own, Brooke had to find a way to balance single motherhood while also redefining what life was to look like for her. Brooke knew that she never wanted to give up on love, because a life without love is only half a life. This is a story of love, of hope, of longing, of enduring memory. Listen now! Or watch the video episode on our YouTube channel. Premier Sponsors: GammaTile Therapy Imvax Inc. Episode sponsors: Mimivax Inc. Alliance Advisory Group
Join U.S. Army National Guard Veteran Sean Claiborne as he hosts a powerful episode of America's Heroes Group, featuring a discussion on the Sarcoma Foundation of America. Special guest Amethyst, a Stellar Award-winning gospel singer, shares her deeply personal journey of losing her sister to sarcoma, while launching her latest album, An Amethyst Symphony. Also on the panel are Tasha Nathan, Program Manager for Engagement & Advocacy, and Brandi Felser, CEO of the Sarcoma Foundation of America, who bring expert insights on sarcoma, treatment challenges, and the fight for increased research and awareness. This is a must-watch for those looking to understand rare cancers, find hope, and witness the healing power of music.
The surgical management of superficial soft tissue sarcoma require a multidisciplinary surgical team given the defect and reconstruction required from an extended resection to achieve negative margins. This team most often includes the primary surgeon (surgical oncology or orthopedic oncology) and a plastic surgeon. A critical decision in the treatment plan is whether or not to reconstruct immediately at the index operation or delay final reconstruction pending pathologic assessment of margins. In this podcast, we will focus on the multidisciplinary surgical approach for superficial sarcoma. We will highlight the role of delayed reconstruction and key clinical considerations in this approach.
Dr Warner discusses the FDA approval of afami-cel for patients with advanced synovial sarcoma and key findings from the pivotal SPEARHEAD-1 trial.
After noticeably limping during a soccer game in 2019, Maggie Spada's daughter Lucy was diagnosed with Ewings Sarcoma at the age of 9. After going through a very difficult treatment protocol, Lucy is now 5 years removed from this diagnosis and is doing very well. Maggie will talk about Lucy and will also talk about her Little Warriors Foundation, which she and her husband Piero started when they learned about how little money the Federal Government was contributing to Pediatric Cancer, and also learning about the treatments that Lucy and other Ewings Sarcoma patients have to go through, which has not changed in over 40 years.
In January of his senior year, Thomas was stretching and noticed a painless bump on the back of his hamstring. The 3-sport athlete thought nothing of it. But by the spring, the lump had grown to the size of a baseball. Thomas was immediately directed to Siteman kids where Washington University pediatric oncologist, Dr. Amy Armstrong, confirmed the mass was a sarcoma. Listen as Thomas, his mom Amelia, and Dr. Armstrong describe the long, intense treatment plan that delayed his plans for college football, and the mental grit it took to return to the sport he loved. Thomas also shares the advice he has for other young athletes. After a diagnosis, every Siteman patient and their medical team develops a treatment plan, and every treatment plan becomes as unique as the patient it supports. Chuck learned how to tailor a treatment plan firsthand as he acted as a caregiver to his son, and again when he faced a cancer diagnosis himself. In this episode, Chuck shares his experience alongside Tate Rondot, Siteman's Manager of Support Services. Both are involved in Siteman's Patient and Family Advisory Council (PFAC), a group dedicated to helping every patient create the plan they need during their cancer care. They offer considerations and resources that personalize patients' treatment from diagnosis to hospice and every stage in between. “This is Cancer” is brought to you by Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine in St. Louis, and produced at Spot Content Studio in St. Louis, MO. For more information on topics discussed in this episode, go to: https://siteman.wustl.edu/ https://siteman.wustl.edu/treatment/specialized-programs/sarcoma/ https://www.stlouischildrens.org/conditions-treatments/childhood-cancer-survivorship-program https://www.stlouischildrens.org/conditions-treatments/oncology-services/proton-beam-therapy https://siteman.wustl.edu/treatment/cancer-types/childhood-cancers/ https://siteman.wustl.edu/visiting/kids/ https://siteman.wustl.edu/doctor/armstong-amy/ https://siteman.wustl.edu/treatment/cancer-types/sarcoma/
Dr Mrinal Gounder from Memorial Sloan Kettering Cancer Center in New York, New York, discusses recent updates on available and emerging treatment strategies for dedifferentiated liposarcoma and other sarcomas, moderated by Dr Neil Love. Produced by Research To Practice. CME information and select publications here (https://www.researchtopractice.com/OncologyTodayLiposarcoma24).
BUFFALO, NY- August 14, 2024 – A new #casereport was #published in Oncotarget's Volume 15 on July 17, 2024, entitled, “Rapid but nondurable response of a BRAF exon 15 double-mutated spindle cell sarcoma to a combination of BRAF and MEK inhibitors.” As noted in the introduction of the Abstract, the BRAF V600E substitution predicts a cancer's sensitivity to BRAF inhibitor therapy, though the mutation is rarely found in soft-tissue sarcomas. Researchers Kseniya Sinichenkova, Iliya Sidorov, Nataliya Kriventsova, Dmitriy Konovalov, Ruslan Abasov, Nataliya Usman, Alexander Karachunskiy, Galina Novichkova, Dmitriy Litvinov, and Alexander Druy from the Dmitriy Rogachev National Medical Research Center of Pediatric Hematology, Oncology, Immunology (Ministry of Healthcare of Russian Federation) and the Research Institute of Medical Cell Technologies in Yekaterinburg, Russia, describe a case of undifferentiated spindle cell sarcoma that exhibited primary insensitivity to standard chemotherapy and a pronounced but non-sustained response to BRAF/MEK inhibitors at recurrence. The case presentation involved a 13-year-old girl that was diagnosed with low-grade spindle cell sarcoma of pelvic localization, BRAF exon 15 double-mutated: c.1799T>A p.V600E and c.1819T>A p.S607T in cis-position. “This is the first report of spindle cell sarcoma BRAF V600E/S607T double-mutated, responding to a combination of B-Raf and MEK inhibitors.” DOI - https://doi.org/10.18632/oncotarget.28606 Correspondence to - Kseniya Sinichenkova - ksinichenkova@gmail.com Video short - https://www.youtube.com/watch?v=QWEAaaixPxE Sign up for free Altmetric alerts about this article - https://oncotarget.altmetric.com/details/email_updates?id=10.18632%2Foncotarget.28606 Subscribe for free publication alerts from Oncotarget - https://www.oncotarget.com/subscribe/ Keywords - cancer, undifferentiated sarcoma, BRAF V600E mutation, low grade spindle cell sarcoma, abdominal cocoon About Oncotarget Oncotarget (a primarily oncology-focused, peer-reviewed, open access journal) aims to maximize research impact through insightful peer-review; eliminate borders between specialties by linking different fields of oncology, cancer research and biomedical sciences; and foster application of basic and clinical science. Oncotarget is indexed and archived by PubMed/Medline, PubMed Central, Scopus, EMBASE, META (Chan Zuckerberg Initiative) (2018-2022), and Dimensions (Digital Science). To learn more about Oncotarget, please visit https://www.oncotarget.com and connect with us: Facebook - https://www.facebook.com/Oncotarget/ X - https://twitter.com/oncotarget Instagram - https://www.instagram.com/oncotargetjrnl/ YouTube - https://www.youtube.com/@OncotargetJournal LinkedIn - https://www.linkedin.com/company/oncotarget Pinterest - https://www.pinterest.com/oncotarget/ Reddit - https://www.reddit.com/user/Oncotarget/ Spotify - https://open.spotify.com/show/0gRwT6BqYWJzxzmjPJwtVh MEDIA@IMPACTJOURNALS.COM
The FDA give an updated on the availability of obesity drugs; The CDC has issued an updated guideline on contraceptive use; The first T-cell gene therapy is approved for synovial sarcoma; Lymphir gains approval for relapsed or refractory cutaneous T-cell lymphoma; Fabhalta gains a new indication.
There are multiple team members who all play an important role in providing coordinated multidisciplinary care for the betterment of patients with sarcomas and tumors. A pathologist is a key member of the team with an extremely important role. Pathologic analysis remains the standard for diagnosis and tumor analysis. We discuss the role of the pathologist in tumor diagnosis with Dr. Obeidin Farres. Obeidin F. What's new in bone and soft tissue pathology 2023: guidelines for molecular testing. J Pathol Transl Med. 2023 May;57(3):184-187. Find out More about our Doctors: Dr. Izuchukwu Ibe: www.linkedin.com/in/izuchukwu-ibe-a073537a/ Dr. Elyse Brinkmann: www.linkedin.com/in/elyse-brinkmann/
In this episode Nurse John invites Steve De Petrillo, the co-founder of Garde-Malade Scrubs. Steve was diagnosed with Sarcoma and found himself between life and death in the hospital. With the help of nurses and other healthcare workers, he won the battle and is currently on remission with the help of his wife Marie, the CEO of Garde-Malade, they found a way to give back to those who gave them healing, caring, and loving hands during the most difficult time of their lives. Bestie let's dive into this inspiring and million-dollar worthy story. Do me the biggest favour bestie, by giving us a 5 star in Spotify & Apple podcast, and to other platforms you're listening to, follow our podcast, leave a comment, turn on notification and share it to your social, it will help us spread the love and get us going! Follow me here: TikTok: https://www.tiktok.com/@nurse.johnn Instagram: https://instagram.com/nurse.johnn YouTube: https://youtube.com/@NurseJohnn Facebook: https://www.facebook.com/nurse.johnn Spotify: https://open.spotify.com/show/7Hp3DBH... Apple: https://podcasts.apple.com/ca/podcast... Check out my merch and get yourself one bestie! https://nursejohnn.com
After receiving a life-altering rare breast sarcoma diagnosis in 2019, Julie embarked on a journey of discovery, immersing herself in cancer literature, connecting with patients and physicians, and identifying resources to enhance her well-being despite the diagnosis. This transformative experience sparked a perspective shift that resulted in a career pivot from marketing professional to a dedicated patient advocate and active contributor to the cancer community. Whether co-hosting her podcast "Oncology Unscripted," networking with patients, or collaborating with various non-profits, Julie leverages her own patient experiences to advocate for improved resources, support, and care for those impacted by sarcoma and other cancers. IG and Twitter @solongsarcoma Email Julie at johnsonjm314@gmail.com To hear Julie on her podcast, Oncology Unscripted, visit - https://podcasts.apple.com/us/podcast/oncology-unscripted/id1679839386 Non Profits Mentioned in the Interview: Sarcoma Alliance Jamie Leandro Foundation _____ To learn more about the 10 Radical Remission Healing Factors, connect with a certified RR coach or join a virtual or in-person workshop visit www.radicalremission.com. To watch Episode 1 of the Radical Remission Docuseries for free, visit our YouTube channel here. To purchase the full 10-epidsode Docuseries visit Hay House Online Learning. Click Here, to learn more about health coaching with Liz or Karla. Follow us on Social Media: Facebook , Instagram, YouTube.
The Courage Ride — which raises funds for Sarcoma research — will roll out of Iowa City on August 10.
Shelle Arnold attended her first Relay For Life Event in 2007 in support of her 26 year old daughter in law Becky who was fighting Ewings Sarcoma. In 2008 Becky passed away and Shelle got fully involved in this event as an organizer and eventually was chairing this fundraiser in several counties in Kansas. Shelle also became involved in the Rock Chalk Roundball Classic as a Board Member for this fundraiser which was started by Kansas Jayhawk Play By Play Announcer Brian Hanni. This event has raised more than $1 million dollars for the fight against Pediatric Cancer.
July is Sarcoma awareness month! Sarcoma Strong remains an amazing resource and a way to be involved in the fight against Sarcoma. For the 2024 Sarcoma awareness month, we have Dr. DiCaprio, founder of Sarcoma Strong as our guest. Sarcoma Strong continues to evolve and grow providing a community and fighting sarcoma by supporting sarcoma research. We discuss the continued evolution of Sarcoma Strong, the annual 5K event and future direction. Flagship -saratoga springs > 600 ppl El paso, Boston, Cooper MD anderson NJ, UCSF, ATL Georgia, UF, Summa health, Henry ford detroit me=ic Links http://www.sarcomastrong.com https://www.zippy-reg.com/online_reg/?e=1956 ::after Find out More about our Doctors: Dr. Izuchukwu Ibe: www.linkedin.com/in/izuchukwu-ibe-a073537a/ Dr. Elyse Brinkmann: www.linkedin.com/in/elyse-brinkmann/
In this episode, we review the high-yield topic of Synovial Sarcoma from the Pathology section. Follow Orthobullets on Social Media: Facebook Instagram Twitter LinkedIn YouTube --- Send in a voice message: https://podcasters.spotify.com/pod/show/orthobullets/message
Memorial Day weekend is a time for us to honor and remember those who selflessly sacrificed their lives for our freedoms, and it's also a major jackpotting weekend in the team roping world.The best of the best enter across multiple Open ropings in the South, such as the Windy Ryon Memorial Roping, Cody NesSmith Memorial and the Danny Dietz Memorial Classic, before they head out for the summer run. On this episode ofThe Short Score, we go over who won what big ropings over Memorial Day weekend 2024.The weekend kicked off with Luke Brown and Travis Graves taking home the 50th Annual Windy Ryon Memorial Roping. Brown and Graves won the historic roping with a 41.22 on five steers for $9,904 May 24, 2024. In Decatur, Texas, Clint Summers and Jake Long took home the Danny Dietz Memorial Classic Open win May 25. With a 33.03, they pocketed a combined $21,560 for the aggregate title. For Summers, the day marks his first Dietz championship, but Long celebrated No. 5 at the benefit event in memory of the late Navy SEAL, Danny Dietz. This also adds another major Open win in Long's already large 2024 resume. (PS: You can watch the Dietz on Roping.com!)The action continued with the Cody NesSmith Memorial Team Roping in Buffalo. The Cody NesSmith Memorial Team Roping remembers and honors the life of Cody NesSmith, who passed in 2020 to Ewing's Sarcoma. Kollin VonAhn and Andrew Ward won the Cody Johnson Resistol Open 7 Header with a 57.13 on seven to split $40,000. The seven-header was followed the next morning by the Bill Fick Ford Open 5 Header, where Tyler Wade and Paul Eaves took home the win with a 30.34 on five.Lastly, the Priefert Ranch Pro Roping kicked off today, May 28, and runs through June 2, and you can watch the action live all week long over at Roping.com.___MORE FROM THE SCOREKenna Francis' and Whitney DeSalvo's $60K WRWC WinThe Short Score: Guymon Champs
In this episode, we review the high-yield topic of Ewing's Sarcoma from the Pathology section. Follow Orthobullets on Social Media: Facebook Instagram Twitter LinkedIn YouTube --- Send in a voice message: https://podcasters.spotify.com/pod/show/orthobullets/message
Memorial Day weekend is a time for us to honor and remember those who selflessly sacrificed their lives for our freedoms, and it's also a major jackpotting weekend in the team roping world.The best of the best enter across multiple Open ropings in the South, such as the Windy Ryon Memorial Roping, Cody NesSmith Memorial and the Danny Dietz Memorial Classic, before they head out for the summer run. On this episode ofThe Short Score, we go over who won what big ropings over Memorial Day weekend 2024.The weekend kicked off with Luke Brown and Travis Graves taking home the 50th Annual Windy Ryon Memorial Roping. Brown and Graves won the historic roping with a 41.22 on five steers for $9,904 May 24, 2024. In Decatur, Texas, Clint Summers and Jake Long took home the Danny Dietz Memorial Classic Open win May 25. With a 33.03, they pocketed a combined $21,560 for the aggregate title. For Summers, the day marks his first Dietz championship, but Long celebrated No. 5 at the benefit event in memory of the late Navy SEAL, Danny Dietz. This also adds another major Open win in Long's already large 2024 resume. (PS: You can watch the Dietz on Roping.com!)The action continued with the Cody NesSmith Memorial Team Roping in Buffalo. The Cody NesSmith Memorial Team Roping remembers and honors the life of Cody NesSmith, who passed in 2020 to Ewing's Sarcoma. Kollin VonAhn and Andrew Ward won the Cody Johnson Resistol Open 7 Header with a 57.13 on seven to split $40,000. The seven-header was followed the next morning by the Bill Fick Ford Open 5 Header, where Tyler Wade and Paul Eaves took home the win with a 30.34 on five.Lastly, the Priefert Ranch Pro Roping kicked off today, May 28, and runs through June 2, and you can watch the action live all week long over at Roping.com.___MORE FROM THE SCOREKenna Francis' and Whitney DeSalvo's $60K WRWC WinThe Short Score: Guymon Champs
In this episode, we review the high-yield topic of Soft Tissue Sarcoma from the Pathology section. Follow Orthobullets on Social Media: Facebook Instagram Twitter LinkedIn YouTube --- Send in a voice message: https://podcasters.spotify.com/pod/show/orthobullets/message