Podcasts about Rhabdomyosarcoma

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Best podcasts about Rhabdomyosarcoma

Latest podcast episodes about Rhabdomyosarcoma

UK Health Radio Podcast
36: Stoma4Life with Raphaela Reeb - Episode 36

UK Health Radio Podcast

Play Episode Listen Later Feb 18, 2025 44:12


Episode 36 - For Rare Disease Month, Ngozi Onwuchekwa shares her battle with Rhabdomyosarcoma, a rare form of cancer and how she turned survival into advocacy on a global platform. Disclaimer: Please note that all information and content on the UK Health Radio Network, all its radio broadcasts and podcasts are provided by the authors, producers, presenters and companies themselves and is only intended as additional information to your general knowledge. As a service to our listeners/readers our programs/content are for general information and entertainment only.  The UK Health Radio Network does not recommend, endorse, or object to the views, products or topics expressed or discussed by show hosts or their guests, authors and interviewees.  We suggest you always consult with your own professional – personal, medical, financial or legal advisor. So please do not delay or disregard any professional – personal, medical, financial or legal advice received due to something you have heard or read on the UK Health Radio Network.

Help and Hope Happen Here
Carol Sagnay will talk about her daughter Noa who was born in July of 2023 with birthmarks all over her body, which led to an almost immediate diagnosis of Rhabdomyosarcoma.

Help and Hope Happen Here

Play Episode Listen Later Dec 19, 2024 55:13


Just 2 weeks after she was born in July of 2023, Carol Sagnay's daughter Noa was undergoing chemotherapy treatment, as she was diagnosed with Rhabdomyosarcoma, which was diagnosed after she was born with birthmarks all over her body. Carol will talk about the difficulties that Noa has gone through for the past 17 months, including being 5 minutes from passing away according to a nurse. Fortunately Carol herself picked out a drug which was given to Noa beginning in February of this year, that has helped Noa regain much of her health up to this point. 

Help and Hope Happen Here
Robyn Spoon will talk about her son Justin who was diagnosed with Embryonal Rhabdomyosarcoma as he entered his final year of college in 2020

Help and Hope Happen Here

Play Episode Listen Later Aug 12, 2024 55:20


As he was beginning his final year in college and having an excellent season running Cross Country , Justin Spoon developed a strange lump next to his nostril. After a very long and difficult wait for 4 weeks after a biopsy was performed , Justin was diagnosed with Embryonal Rhabdomyosarcoma in the fall of 2020. Justin not only fought his battle for 2 and half years, he decided to donate his tumor for research which has proven to be of great help in learning more about this form of Pediatric Cancer. Justin passed away from his gallant fight in March of 2023.

Help and Hope Happen Here
Jessica Messer will talk about her son Bennett who was diagnosed with Neurofibromatosis when he was born and this led to his being diagnosed with Embryonal Rhabdomyosarcoma in January of 2022.

Help and Hope Happen Here

Play Episode Listen Later Aug 1, 2024 39:35


Very often, when a newborn is diagnosed with the genetic condition called Neurofibromatosis which can lead to tumors being formed on nerve endings, these tumors turn out to be benign. Unfortunately , Jessica Messer's son , who was born with this genetic condition had a bulging eye that eventually was diagnosed as Embryonal Rhabdomyosarcoma. Bennett fought this disease as long as he could before passing away at the tender age of 2 years old in February of 2023.

Help and Hope Happen Here
Courtney Marzilli's daughter Chloe was diagnosed with Rhabdomyosarcoma just before her 7th birthday in January of 2021. Chloe successfully completed her treatment in the fall of 2022 and now as a 10 year old, she is doing well and is leading a normal

Help and Hope Happen Here

Play Episode Listen Later Jun 13, 2024 57:31


Just by chance on a Saturday evening in 2021, Courtney Marzilli noticed a lump on her then 6 year old daughter Chloe's thigh. This lump turned out to be a tumor and Chloe was diagnosed with Rhabdomyosarcoma just before she turned 7 years old. Chloe went through a 42 week Chemotherapy treatment protocol at the Jimmy Fund Clinic in Boston and completed her treatment in the fall of 2022. Now 10 years old, Chloe is doing well physically and thankfully is leading as good of a life as posssible.

Your Life as a Story

Sara shares her story about her 6 year old daughter, Belle and her journey with Rhabdomyosarcoma.Belle's Instagram page: team_belle_1Resources discussed:www.limbkind.orgwww.maggiesmission.orgwww.coreyspromise.org

At The Beam
S2E19 Rhabdomyosarcoma

At The Beam

Play Episode Listen Later Mar 29, 2024 16:07


Case-based workup and management of Rhabdomyosarcoma in radiation oncology.

Help and Hope Happen Here
Amber Friesen will talk about her daughter Taylor and her fight with Aveolar Rhabdomyosarcoma which was diagnosed just before the Pandemic began in 2020 and very sadly ended with her passing in December of 2021

Help and Hope Happen Here

Play Episode Listen Later Jan 28, 2024 45:16


Amber Friesen was told by her soon to be 10 year old daughter Taylor that she had what looked to be either a lump or a cyst on her right hand. Unfortunately what this turned out to be was the Pediatric Cancer Aveloar Rhabdomyosarcoma. On today's podcast Amber will talk about her beloved daughter who was diagnosed with this cancer in early 2020 and passed away in December of 2021. Amber will also talk about the non-profit TAYLOR'S DREAM that she started to honor the life of Taylor.

Help and Hope Happen Here
Elena Bliss will talk about the very difficult battle that her daughter Brittney fought from May of 2022 until June of 2023 before passing away from Embryonal Rhabdomyosarcoma just after her 5th birthday.

Help and Hope Happen Here

Play Episode Listen Later Jan 8, 2024 69:59


Brittney Bliss was diagnosed with Embryonal Rhabdomyosarcoma just after her 4th birthday in 2022. Her mother Elena will talk about the 13 month battle in which her beloved daughter never really caught a break, despite the fact that she was treated at some of the leading Pediatric Cancer hospitals in the country including Boston Children's Hospital and Children's Hospital of Philadelphia. Brittney passed away from this form of Pediatric Cancer on June 6th of 2023, just 10 days after her 5th birthday. 

The Orthobullets Podcast
Pathology⎪Rhabdomyosarcoma

The Orthobullets Podcast

Play Episode Listen Later Nov 1, 2023 13:22


In this episode, we review the high-yield topic of ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Rhabdomyosarcoma ⁠⁠⁠⁠from the Pathology section. Follow ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠Orthobullets⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠ on Social Media: Facebook: www.facebook.com/orthobullets Instagram: www.instagram.com/orthobulletsofficial Twitter: www.twitter.com/orthobullets LinkedIn: www.linkedin.com/company/27125689 YouTube: www.youtube.com/channel/UCMZSlD9OhkFG2t25oM14FvQ --- Send in a voice message: https://podcasters.spotify.com/pod/show/orthobullets/message

Ash Said It® Daily
11-year-old Cancer Survivor Talks SHE WARRIOR

Ash Said It® Daily

Play Episode Listen Later Jun 19, 2023 6:17


11-year-old Toronto-based author Siena (Sisi) Kleiner-Fisman details her harrowing but inspirational experience as a long-term cancer survivor with her impactful new book for adults and children alike, “She-Warrior” — available now. Get the book HERE: https://www.amazon.com/dp/B0C5...=cm_sw_r_as_gl_api_gl_i_46S03A3J0AYW5BQK4HQ1?linkCode=ml2&tag=ashsaidit-20 When Sisi was three years-old, she was diagnosed with a rare cancer. Initially, the weight of it all made her sad and angry at being sick and missing out on all the fun of summer. However, when Sisi and her parents traveled to Philadelphia, PA, to receive life-saving radiation, Sisi made new friends and had all sorts of adventures exploring a new city. Facing her demons head-on with optimism and a relentless spirit, Sisi chronicles her life-changing journey with “She-Warrior”. As Sisi puts it, “Being diagnosed with cancer as a small child, getting through treatment, and now being a long-term survivor is a unique experience.” What follows is an excerpt from “She-Warrior” detailing one of Sisi's first doctor's visits: “The doctors needed a sample of the cancer (“earth-monster” to Sisi). They wanted to look at it under the microscope to make sure it really was Rhabdomyosarcoma and not some other monster and to help decide which medicine Sisi would need. Sisi actually called the “earth-monster” “Toots” after watching a cartoon episode about a funny little germ named “Toots.” Years after her cancer ordeal, she woke up one morning with an epiphany. Sisi realized she had an extraordinary story that had to be told. She decided to write this book to help other kids cope with childhood cancer and inspire them to remain hopeful in their journeys and to know that they are not alone. “Even though my days were filled with uncertainty and fear, with the help of my doctors, nurses, and my mom, I never lost hope, and eventually, I recovered,” says Sisi. “I decided that telling my story could have such a huge impact on kids who are going through tough times with cancer as I did and telling them my story might help them have hope that they too will get better.” This story, written by Sisi when she was 11-years-old, will delight children, teens, and adults alike. Featuring original art by Sisi, “She-Warrior” is the true story of an inspiring little girl with a big personality who navigates adversity with humour and resilience. Sis's debut book is written with a youthful spirit capturing the optimism and resilience of childhood. Sisi Kleiner-Fisman lives in Toronto, Ontario, Canada, where she is a grade 5 student. She loves singing, dancing, performing in musical theatre, drawing and painting, and spending time with her friends and family. While Sisi still has some hurdles to conquer due to the effects of radiation, she plans to be a child psychologist. Sisi says “I want to help kids cope with their feelings and anxieties because I know what it's like”. She will impact others, knowing what it is like to be vulnerable and in need of support and encouragement. 11-year-old author Siena (Sisi) Kleiner-Fisman's debut book “She-Warrior” is available now! ► Luxury Women Handbag Discounts: https://www.theofficialathena.... ► Become an Equus Coach®: https://equuscoach.com/?rfsn=7... ► For $5 in ride credit, download the Lyft app using my referral link: https://www.lyft.com/ici/ASH58... ► Review Us: https://itunes.apple.com/us/po... ► Subscribe: http://www.youtube.com/c/AshSa... ► Instagram: https://www.instagram.com/1lov... ► Facebook: https://www.facebook.com/ashsa... ► Twitter: https://twitter.com/1loveAsh ► Blog: http://www.ashsaidit.com/blog #atlanta #ashsaidit #theashsaiditshow #ashblogsit #ashsaidit®

PodcastDX
Alveolar rhabdomyosarcoma

PodcastDX

Play Episode Listen Later May 16, 2023 53:37


This week we will discuss an extremely rare type of cancer that is most often associated with younger children.  When it affects adults it is more difficult to treat. Our guest this week is Wilder McNemar.  Wilder has a decent following on TikTok which is where I found him.  You can follow him here: https://www.tiktok.com/@queerpple?lang=en ​ A Rhabdomyosarcoma is a type of soft tissue sarcoma. A sarcoma is a tumor that starts in the supporting tissues (connective tissues) of the body - for example, bone, muscle, fat, cartilage and ligaments. Rhabdomyosarcomas grow in the muscles of the body. Rhabdomyosarcoma can occur anywhere in the body. There are three types of rhabdomyosarcoma which affect different age groups:   Embryonal Rhabdomyosarcoma (ERMS) This most often affects young children, usually under the age of 6 years. It most often occurs in the head and neck region, especially in the tissues around the eye (called an orbital rhabdomyosarcoma). Embryonal Rhabdomyosarcoma may also occur in the womb, vagina, bladder or the prostate gland. One type of Embryonal Rhabdomyosarcoma is called sarcoma botryoides, which looks like a bunch of grapes and most often occurs in the vagina or bladder. Embryonal Rhabdomyosarcomas usually spread to surrounding tissues. However, the outcome (prognosis) is usually very good and most children with Embryonal Rhabdomyosarcoma are cured of the cancer. Alveolar Rhabdomyosarcoma This tends to occur in older children and young adults. Alveolar Rhabdomyosarcomas (also called ARMS) most often occur in the arms and legs, chest or tummy (abdomen).  This is the type Wilder is working with. ​ARMS typically affects all age groups equally. It makes up a larger portion of RMS in older children, teens, and adults than in younger children (because ERMS is less common at older ages). ARMS most often occurs in large muscles of the trunk, arms, and legs. ARMS tends to grow faster than ERMS, and it usually requires more intense treatment. However, in some cases of ARMS, the cancer cells lack certain gene changes, which makes these cancers act more like ERMS (and allows doctors to give less intense treatment). ​Pleomorphic Rhabdomyosarcoma This tends to occur in middle-aged adults. It is usually treated with chemotherapy, surgery and radiotherapy but treatment is not as effective as for other types of Rhabdomyosarcoma. ​We will keep Wilder in our thoughts and prayers and if you are interested in making a donation, there's a link on Wilder's TikTok account: https://www.tiktok.com/@queerpple?lang=en .  

EmBRACE IT With Lainie & Estela - Look Good + Feel Good = Living Your Best Life With Disabilities
Embrace It: Episode 38 - Jearlean Taylor, Different to Make a Difference

EmBRACE IT With Lainie & Estela - Look Good + Feel Good = Living Your Best Life With Disabilities

Play Episode Listen Later Nov 25, 2022 46:04


At only 3 years old, Taylor was diagnosed with a rare vaginal cancer called Rhabdomyosarcoma. Doctors didn't expect her to survive. After chemotherapy, radiation, and several surgeries, Taylor was cancer-free but left with two permanent ostomy bags — colostomy and urostomy, which aid her bladder and bowel functions — for the rest of her life.Growing up with ostomy bags in Baltimore, Maryland, Jearlean Taylor wasn't sure she would be able to pursue her dreams as a fashion model. Today, she has been featured in over 30 magazines, newspapers, Time Square billboards, the Today Show, and runway shows. Join us for this uplifting episode as this powerful disability advocate is making a difference.Follow Jearlean on Instagram. Visit Jearlean's Website, documentary & book!Looking for more great tips, hacks, and blog posts? Visit: Trend-Able.comFind more on Charcot-Marie-Tooth (CMT) and patient resources on: HNF-cure.orgFollow us on IG! @embraceit_podcast | @trend.able | @cmtwegotthisPlease leave us a review and help others find us! Hosted by Lainie Ishbia and Estela Lugo.Embrace It is produced by Launchpad 516 Studios.For sponsorships and media inquiries, drop an email to: embraceit@lp516.comSubscribe to Embrace it with Lainie and Estela on Apple Podcasts and get notified of new episodes! https://podcasts.apple.com/us/podcast/embrace-it-with-lainie-estela-smashing-disability-stigmas/id1468364898

Oncotarget
Genes & Cancer: How Ewing Sarcoma Led to Discoveries in Rhabdomyosarcoma

Oncotarget

Play Episode Listen Later Jun 29, 2022 8:01


Listen to a blog summary of a research paper published by Genes & Cancer, entitled, "KDM3A/Ets1/MCAM axis promotes growth and metastatic properties in Rhabdomyosarcoma.” Rhabdomyosarcoma (RMS) and Ewing Sarcoma are among the most common types of cancer that develop in childhood. In recent years, new studies from researchers at the University of Colorado Denver Anschutz Medical Campus have contributed to the expansion of biomedical knowledge about how these diseases progress—paving a way for novel treatment strategies and therapeutics to inhibit the progression of these diseases. INTRODUCTION RMS consists of two predominant and distinct disease subtypes: fusion-positive RMS (FP-RMS) and fusion-negative RMS (FN-RMS). Fusion-positive RMS is the more aggressive subtype and shows a strong metastatic tendency to spread to other parts of the body. The sarcomagenesis of FP-RMS is driven by a genetic mutation that spawns the abnormal cancer-driving protein PAX3/FOXO1, or P3F. These P3F oncofusion genes use transcriptional and epigenetic mechanisms to drive FP-RMS pathogenesis. However, little was previously known about the mechanisms P3F uses for metastasis. Recently, a team of dedicated researchers—Lays Martin Sobral, Marybeth Sechler, Janet K. Parrish, Tyler S. McCann, Kenneth L. Jones, Joshua C. Black, and Paul Jedlicka—endeavored to better understand the mechanisms and molecular pathways contributing to RMS progression, including the more aggressive FP-RMS subtype. In 2020, their influential research paper was published in Genes & Cancer and entitled, “KDM3A/Ets1/MCAM axis promotes growth and metastatic properties in Rhabdomyosarcoma.” Full blog - https://www.impactjournals.com/journals/blog/genesandcancer/how-ewing-sarcoma-led-to-discoveries-in-rhabdomyosarcoma/ Keywords - pediatric cancer, rhabdomyosarcoma, KDM3A, Ets1, metastasis About Genes & Cancer Genes & Cancer covers all aspects of the structure and function of oncogenes, growth suppressor and apoptotic genes. To learn more about Genes & Cancer, please visit https://www.genesandcancer.com/ and connect with us: Facebook - https://www.facebook.com/GenesandCancer/ Twitter - https://twitter.com/GenesCancerJrnl YouTube - https://www.youtube.com/channel/UCvlxdOvQQymzBWWbxAYyrRw LinkedIn - https://www.linkedin.com/company/genes-&-cancer Genes & Cancer is published by Impact Journals, LLC: https://www.ImpactJournals.com Media Contact MEDIA@IMPACTJOURNALS.COM 18009220957

Invisible Women Podcast
I Am A Survivor w/ Entrepreneur, Jearlean Taylor

Invisible Women Podcast

Play Episode Listen Later Jun 23, 2022 37:57


Today we are speaking with Jearlean Taylor about her rare cancer diagnosis at the tender age of 3 years old and how she turned her pain into a purpose as she speaks to women and men all over the world to inspire them to find their passion in life. BIO I am Jearlean from Baltimore, MD. I am a Christian, cancer survivor, double ostomate, fashion model, author, public speaker, entrepreneur, and ostomy advocate. My life has had some unexpected outcomes. I guess you can say “life” happened. At the tender age of 3 years old I developed a rare form of cancer (Rhabdomyosarcoma). It was because of the location of the tumors and treatments I had to undergo ostomy surgery. Ostomy surgery of the bowel is an operation that changes the way intestinal contents leave your body when part or all of your bowel is diseased, injured, or missing. During ostomy surgery of the bowel, surgeons connect the large or small intestine to the skin on the outside of your abdomen. As a result, I was left with two permanent ostomy bags (colostomy & urostomy) www.ostomy.org . I was cancer free a year after my diagnosis and treatments, but 2 ostomy bags. How would I cope? How would I deal with what life had dealt me? Growing up with (2) ostomy no one could imagine my difficulties, low self-esteem, insecurities, too many surgeries (I lost count), and my problem with loving me. My life was a journey of unexpected circumstances. I suffered with low self-esteem, pity, depression, and even suicidal thoughts. Through my journey and faith in God, I discovered who I could be in spite of my medical circumstances. My insecurities did not change overnight, but I learned to be a survivor. I am using my voice through my cancer survivorship and ostomy journey through public speaking, appearances, educating, and communicating that your life is not over because you have life circumstances. I used to say, why me?' Why cancer, why ostomy bags? Now I say, ‘why not me?' Now, T.V., radio, billboards, magazines, commercials, and making a difference. WE ARE ALL DIFFERENT TO MAKE A DIFFERENCE! -- Jearlean Taylor Be all you can be and more www.jearleantaylor.com --- Send in a voice message: https://anchor.fm/invisiblewomen/message

The Peaches Podcast
Bonus Ep: Our Instructor Bella On Her Cancer Diagnosis

The Peaches Podcast

Play Episode Listen Later Jun 12, 2022 100:02


In this very special episode, T & B sit down with team member and killer instructor Bella Bradford. Until recently, Bella was a regular 22 year old, doing all the things you'd expect a smart, fun loving and fiercely ambitious young woman to be doing in her prime. After moving to Sydney to follow her dreams, Bella was working as a star instructor in some of the best fitness studios in the Eastern Suburbs, studying hard and of course - having the odd wild night or two on the weekends with her girlfriends. Many of the Peaches community will know Bella, and her incredible classes. She became favourite among our clients within weeks of joining the team - with Tori and Bec often receiving texts from long time members singing her praises. Everything changed, however, 5 days before Christmas in 2021. After experiencing some painful health issues that she had thought were related to her wisdom teeth, Bella struggled to find a diagnosis that matched her symptoms. During oral surgery, the problem was finally discovered - a white mass hiding in Bella's jaw was biopsied, and identified as a very rare and aggressive cancer called Rhabdomyosarcoma. In this episode, Bella fills us in on what the past 5 months have looked like for her - from multiple surgeries, chemo and hospital stays, this resilient and eternally positive bright star was nothing short of inspirational in this interview. Bella, as always, has her eyes firmly set on the future. Next stop: Europe 2023! OUR LOVELY GUEST BELLA: @bellabradford DONATE TO BELLA'S FUNDRAISER: All funds will go to The Chris O'Brien Lifehouse - Click Here LET'S GET PEACHY: Train with us online - online.peachespilates.com Train with us in studio - peachespilates.com/studios Follow us - @peachespilates, @toriclapham, @becchidiac

When Autumn Comes
Stephanie | Red

When Autumn Comes

Play Episode Listen Later May 25, 2022 48:12


After her daughter, Nina, passed at 8 years old from Rhabdomyosarcoma (soft tissue cancer) Stephanie continued on, facing waves of grief along with her husband and two other children. 15 years later, Stephanie is now leading grief support groups, helping other parents process the loss of their child(ren).  Topics discussed that you do not want to miss: Diagnosis + loss within the grief journey Processing grief as a child Honoring and remembering your child(ren) after they pass Everyone's grief journey is different Links and resources: Freebie: How to Help Your Grieving Friend - and not be a jerk.  Follow us on Facebook: www.facebook.com/WhenAutumnComesPodcast Join the WAC Society to talk about all things pod related: www.facebook.com/WhenAutumnComesSociety Follow us on Instagram: @WhenAutumnComesPodcast Catch up with Suz: @suzgeoghegan on insta www.suzgeoghegan.com/freebies Make sure you hit SUBSCRIBE so you don't miss out on our upcoming stories from other members of our medical and disabled community.  And, if you enjoyed this episode, please leave us a 5 star rating and a review!  Thank You!  

Living With Scanxiety
Mother of a Rhabdomyosarcoma Warrior, Therapist, and host of Family Chemotherapy

Living With Scanxiety

Play Episode Listen Later Apr 20, 2022 33:41


Season 5 Episode 3 Join me as I interview Adriana Lewin, a momcologist of a fantastic survivor. Hear her story of triumph during hardship and what she is up to now in the childhood cancer world. She is revolutionizing the coming together of caregivers through mental health and more. For Show Notes Visit:www.livingwithscanxiety.comSupport the show (https://paypal.me/Scanxiety)

H.E.R. Story
HER Story Podcast x Jearlean Taylor: We are all "different to make a difference

H.E.R. Story

Play Episode Listen Later Apr 13, 2022 22:52


You don't know H.E.R. Story! Jearlean Taylor developed a rare form of cancer at a very young age, Rhabdomyosarcoma. Thankfully, Jearlean's story does not end here. While faced with adversity most of her childhood and adolescent years— Jearlean stands today strong! And through her hardships, she continues to encourage, uplift, understand, and spread her testimony abroad. Listen now to learn more about this phenomenal survivor, advocate, entrepreneur, and author!

The Zero to Finals Medical Revision Podcast

This episode covers sarcoma.Written notes can be found at https://zerotofinals.com/surgery/orthopaedics/sarcoma/ or in the orthopaedic section of the Zero to Finals surgery book.The audio in the episode was expertly edited by Harry Watchman.

Cancer Healing Journeys by ZenOnco.io & Love Heals Cancer
Sarcoma Cancer Survivor : Sitara Khan : Cancer Survivor Stories

Cancer Healing Journeys by ZenOnco.io & Love Heals Cancer

Play Episode Listen Later Nov 12, 2021 6:26


Sitara had Cancer at the age of 13 in the year 2009. She had profuse bleeding on an auspicious day, and her parents immediately took her to the nearby hospital. She almost fainted on the way to the hospital, and after two to three days, she was discharged. The same incident happened multiple times, and no one was able to find the exact reason. Her parents then took her to the hospital in Delhi, and there she was diagnosed with Rhabdomyosarcoma. Zenonco.io - Making quality integrative oncology cancer care accessible to all. Visit our website: https://zenonco.io/ If you or your loved one has been diagnosed with cancer recently, and need guidance on treatment or have any doubts or queries, please call ZenOnco.io on +91 99 30 70 90 00.

The Resilient Soul Podcast
EP 13: Finding Strength after Losing a Child to Cancer with Rosaria Kozar

The Resilient Soul Podcast

Play Episode Listen Later Nov 1, 2021 33:14


 Finding strength after losing a child to cancer with Rosaria KozarMy guest, Rosaria Kozar, is the host of Living With Scanxiety Podcast, a podcast for caregivers of children with cancer where she interviews oncologists, pediatricians, survivors, parents, and other applicable organizations in the pediatric cancer world.One of Rosaria's sons was diagnosed with cancer, Rhabdomyosarcoma, at age 2.  Rosaria's professional career, teaching special needs children, of 10 years was placed on hold upon the diagnosis. Unfortunately, her son succumbed to the disease in 2015 at age 3.In memory of her son, Rosaria has taken upon herself to help people who are going through what she went through by providing support, information, and promoting hope for caregivers.Tune in as Rosaria shares how she undertakes this noble cause.What you will Hear/Learn2:12 Rosaria's son's journey of diagnosis with cancer.6:44 Why it's good to question everything and listen to your instincts. Rosaria shares how she developed the character of questioning everything from a tender age.  10:35 Rosaria talks about parenting through cancer; finding balance between being protective and being over-protective.14:03  Rosaria's coping mechanism during her son's therapy and after he was gone.18:18 How engaging in activities such as legislation advocacy, social work, podcasting has helped Rosaria in her resilience journey and even get past grieving.22: 45 How cultivating connections also helped Rosaria to be resilient.Hey there!  I hope you enjoyed the episode!  If you would, I could use your help in reaching more people who can also get value from this podcast and that would be when you leave a 5star review!  This helps get the podcast ranked and found by more people just like you!  Also, I know I don't need to tell you but we all go through tough times and challenges in our lives.  We can feel overwhelmed, burned out, and just like we don't know where to go next in our lives.  THIS I can help you with!  I've been trained in both brain and body-based healing modalities and can absolutely get you where you want to be…. And if you “don't know” I can help with that too! My Burnout to Bliss Coaching program will help you rewire negative thinking so that you stop finding yourself on loop, and release any blocks in your body that keep you feeling stuck and just not yourself so you can find the bliss you have been searching for!  Let's hop on a call and chat.  Just click the Burnout to Bliss Coaching link below to schedule a time for a FREE 30 min consultation!  Quote“IT IS OKAY NOT TO BE OKAY” Rosaria Kozar.Connect with Rosaria                                                         Website: https://www.livingwithscanxiety.org/Linkedin: https://www.linkedin.com/ livingwithscanxietyInstagram: https://www.instagram.com/living_with_scanxiety/Youtube: https://www.youtube.com/channel/UCcPpNbFwZLHA0LLtIKQOnwQ   

I am a Griefist: A Childhood Cancer Grief Journey Podcast

On today's episode, we meet Griefist Michele, mother to David, who was diagnosed at 4 years old with Rhabdomyosarcoma in 1997.

WEEI/NESN Jimmy Fund Radio-Telethon
GHS- Chloe Marzilli joins the show alongside her parents, Courtney and Tony, and her brother Finn to discuss her battle Rhabdomyosarcoma and the comfort the Jimmy Clinic provides to her

WEEI/NESN Jimmy Fund Radio-Telethon

Play Episode Listen Later Aug 24, 2021 9:58


Chloe is a 7 year old that was diagnosed in February of 2021 after her parents found a lump in her thigh.  Chloe's treatment includes weekly chemotherapy, and 6 weeks of radiation. Her treatment will continue through the end of November and maintenance chemotherapy will start in December pending how labs go.  Chloe loves making slime and will begin 2nd grade this Fall.  See omnystudio.com/listener for privacy information.

My Cancer Story
S2 E17 - Rosaria Kozar - Caretaker/Parent Story

My Cancer Story

Play Episode Listen Later Jun 17, 2021 46:19


This week you will meet cancer advocate and mother, Rosaria. She hales all the way from Boston, MA. She is telling her son Brody's story with us today. Her son, Brody, was diagnosed with Rhabdomyosarcoma when he was only 23 months old. He suffered through numerous scans, infusions, and more before he lost his battle at the age of 3 in 2015. During his fight, she felt lost and had difficulty connecting to therapists who did not fully understand my situation. Enter Rosaria creating her Podcast in 2019, Living With Scanxiety so her listeners can connect with people who understand people like themselves — people who understand the anxiety and heartache. You can find out more about Rosaria and her son Brody's story: https://www.livingwithscanxiety.org/ IG: @living_with_scanxiety --- Support this podcast: https://anchor.fm/mycancerstorypodcast/support

Living With Scanxiety
Living With Scanxiety

Living With Scanxiety

Play Episode Listen Later Jun 9, 2021 11:04


Season 3 and Episode 7 Sit down with your host Rosaria Kozar, the mother of a warrior that battled Rhabdomyosarcoma. She answers numerous questions about her podcast, Living With Scanxiety, the Cancer Podcast that focuses on giving support, providing information, and promoting hope. The aim is at caregivers of a child who has cancer. But this episode focuses on the 'why' of the podcast. 

True Healing with Robert Morse ND
Lung Cancer, Lymphoma, Teas, Rhabdomyosarcoma, Back Pain

True Healing with Robert Morse ND

Play Episode Listen Later May 26, 2021 63:01


From Q&A Q&A 410 - Lung Cancer, Lymphoma, Teas, Rhabdomyosarcoma, Back Pain Video Link - https://youtu.be/ab5YercUqbo Have a question? Send it to: questions@dmhhc.com Visit the Club at: www.drmorsesherbalhealthclub.com Do you have a podcast, or want to start one? Want to save time and stress creating your episodes and or sound files? Allow us to help. Let Alt Control Delete produce your podcast. For inquiries, please send email to: info@altcontroldelete.com. or call: 917-451-1010.

WBZ NewsRadio 1030 - News Audio
Hingham Non-Profit Hosting Virtual Benefit For Pediatric Cancer Research

WBZ NewsRadio 1030 - News Audio

Play Episode Listen Later May 20, 2021 1:36


Maddie's Promise will host a virtual gala benefit Friday to raise money for pediatric cancer research. The organization was created in honor of 11-year-old Maddie McCoy, of Hingham, who died of a rare form cancer called Rhabdomyosarcoma in 2019. WBZ NewsRadio's Laurie Kirby reports.

Cancer Actually F***ing Sucks
Episode 29: Vanessa Pettijohn - 2 Time Rhabodmyosarcoma & Limb Loss Survivor. Cancer As A Teenager & How It's Shaped Her Career

Cancer Actually F***ing Sucks

Play Episode Listen Later Feb 23, 2021 49:01


We're speaking with Vanessa Pettjohn this week, a two time Rhabdomyosarcoma survivor, limb loss survivor and a licensed clinical social worker providing emotional support to patients at an outpatient cancer center. Vanessa opens up about her experience getting diagnosed with a rare childhood cancer at just 15 years old, the recurrence she had at 17, losing her arm to the disease and how she recovered both physically and mentally. She also talks about how this experience has led her to the career she has now, being let down by the healthcare system after her amputation, getting her independence back and so much more. Vanessa is truly a bright light in this cancer community! Follow us to keep with our guests on Facebook and Instagram @canceractuallysuckspodcast Rate Review Subscribe! --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

Cancer Actually F***ing Sucks
Episode 27: Anaelli Castro - 2 Time Rhabdomyosarcoma Survivor. The importance of connection & stepping out of your comfort zone

Cancer Actually F***ing Sucks

Play Episode Listen Later Feb 9, 2021 44:31


In this week's episode of Cancer Actually F***ing Sucks we're speaking with Anaelli Castro, a two time Rhabdomyosarcoma survivor, a rare form of sarcoma. Anaelli was diagnosed at 17 and then again 13 years later. We talk about feeling emotionally numb and in survival mode during chemo and radiation treatment, the depression and anxiety that comes after and how she was able to get out of It. She explains how important It is to ask for help and find support wherever you can with other people you can relate to. Anaelli opens up about wanting to find her purpose after cancer and how the organization Regarding Cancer helped her immensely through It all. Regarding Cancer pairs cancer patients with a survivor of that same cancer to help support them through the ups and downs of their diagnosis. To get in touch with them to find support or volunteer, check out their website regardingcancer.org. Keep up with us and our guests on Instgram and Facebook @canceractuallysuckspodcast! --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

Help and Hope Happen Here
Kaufman Family Interview- with Dr. Volchenboum

Help and Hope Happen Here

Play Episode Listen Later Feb 1, 2021 50:29


10 year old Ruby Kaufman was diagnosed with Rhabdomyosarcoma in 2010. After one year of grueling treatment , Ruby decided that she wanted to help other kids who were diagnosed with some type of cancer so she created a fundraiser called Ruby's Dance Till You Drop. That fundraiser raised $72,000. Eventually, through the efforts of Ruby's family, the Rally Foundation, and Dr. Sam Volchenboum, a grant was awarded with the money that Ruby raised from her fundraiser to help with research in the fight against this cancer. This initial grant proved successful, and now millions of dollars in grant money has been received because of the success of the first grant, and has been used to create one of the largest Data Research Systems to help in the overall fight against Pediatric Cancer. This story is a great win for everyone involved. Support the show (http://danafarber.jimmyfund.org/goto/pediatricpodcast)

Sarcoma Sisters
Sarcoma Pathology with Dr. Valerie Fitzhugh

Sarcoma Sisters

Play Episode Listen Later Oct 12, 2020 57:07


Dr. Fitzhugh is an associate professor and interim chair of the Department of Pathology, Immunology and Laboratory Medicine at Rutgers New Jersey Medical School and the Department of Pathology and Laboratory Medicine at Rutgers Robert Wood Johnson Medical School. She is an expert in the pathology of sarcomas. Dr. Fitzhugh also has interests in the recruitment, retention, and promotion of Black and other underrepresented groups in medicine to pathology as well as racial disparities in treating patients. Dr. Fitzhugh is a celebrity pathologist and has >21,000 followers on Twitter - find her at @DrFNA. And check out her article: Through My Eyes: The experience of a Black woman in pathology In this episode we talk about all things sarcoma pathology and also Dr. Fitzhugh's unique experience as a Black woman pathologist and her platform #blacklivesmatter   We discuss: 5:30 what does a pathologist do?   12:30 why pathology diagnosis takes time and the steps pathologists take to determine sarcoma type   14:00 why second opinions are needed   16:30 The variety of sarcoma tumors    18:00 why it is so important to get the diagnosis right    19:00 pathologists have big hearts   22:18 : breaking down IHC/working up a tumor   25:30 growing and karyotyping tumors and genomics   30:00 FISH breakdown   33:15 why is tissue an issue?   34:45  Sarcoma is a team sport and including families    38:15 how is pathology changing with new technology    43:00 Dr. Fitzhugh platform - women of color in medicine    44:00 Convincing minority children pathology is where they want to be - letting future generations know the role of a pathologist   46:30 meaningful impact of having black role models in pathology    49:45 Dr. Fitzhugh finding her voice   50:25 Trolls on Twitter and assigning value to black people   54:00 Bubba Watson update   music: Rospigg photo: CDC

Beautiful Strength: The Podcast
Makenzie & Amanda: Rhabdomyosarcoma of the soft palate survivor/fighter.

Beautiful Strength: The Podcast

Play Episode Listen Later Sep 8, 2020 46:22


Makenzie O’Toole is a 14 yr old Rhabdomyosarcoma of the soft palate survivor/fighter. Makenzie was diagnosed at the age of 2 after a suspected abnormally large uvula closing off her airway ended up being a tumor. Kenzie underwent chemo and radiation and was one of two Rhabdomyosarcoma’s in the head treated at the University of Michigan Mott Children’s hospital. At the time of diagnosis Kenzie’s cancer and area was extremely rare and her treatment experimental. Unfortunately as time has gone by many more cases have been found. Kenzie’s case is used in teaching at U of M and many colleges around Michigan with both the oncology specialists and also speech pathologists. Kenzie sees 14 specialists and continues to fight the everlasting effects of treatment that saved her life. She wants to pursue a career in medicine and wants to help other kids find their voice and advocate for themselves. Kenzie has found her voice and learned to voice her needs in the medical community and also in school --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app

Stethoscopes to Swaddles Podcast
The Golden Ribbon- A Doctor Mama''s Journey Navigating Childhood Cancer

Stethoscopes to Swaddles Podcast

Play Episode Listen Later Aug 10, 2020 69:35


On this episode, I'm joined by my dear friend, Dr Nehdia Mumuni. We explore her motherhood journey and talk about her experience since her daughter's cancer diagnosis at age 1.  Some fast facts Soft tissue sarcomas account for about 7 to 8 percent of childhood cancers. Rhabdomyosarcoma is the most common type of soft tissue sarcoma in children. About two-thirds of rhabdomyosarcoma cases are diagnosed in children younger than age 10. More males than females and more caucasians than African-Americans develop rhabdomyosarcoma.Soft tissue sarcomas account for about 7 to 8 percent of childhood cancers. Rhabdomyosarcoma is the most common type of soft tissue sarcoma in children. About two-thirds of rhabdomyosarcoma cases are diagnosed in children younger than age 10. More males than females and more caucasians than African-Americans develop rhabdomyosarcoma. Donate to pediatric cancer research here Donate to St. Jude's Children's research hospital here  

PaperPlayer biorxiv genetics
Genetic analysis of obstructive sleep apnoea discovers a strong association with cardiometabolic health

PaperPlayer biorxiv genetics

Play Episode Listen Later Aug 4, 2020


Link to bioRxiv paper: http://biorxiv.org/cgi/content/short/2020.08.04.235994v1?rss=1 Authors: Strausz, S., Ruotsalainen, S. E., Ollila, H. M., Karjalainen, J., Reeve, M., Kurki, M., Mars, N., Havulinna, A. S., Kiiskinen, T., Mansour Aly, D., Ahlqvist, E., Teder-Laving, M., Palta, P., Groop, L., Magi, R., Makitie, A., Salomaa, V., Bachour, A., Tuomi, T., Palotie, A., Palotie, T., Ripatti, S. Abstract: There is currently only limited understanding of the genetic aetiology of obstructive sleep apnoea (OSA). The aim of our study is to identify genetic loci associated with OSA risk and to test if OSA and its comorbidities share a common genetic background. We conducted the first large-scale genome-wide association study of OSA using FinnGen Study (217,955 individuals) with 16,761 OSA patients identified using nationwide health registries. We estimated 8.3% [0.06-0.11] heritability and identified five loci associated with OSA (P < 5.0x10^-8): rs4837016 near GTPase activating protein and VPS9 domains 1 (GAPVD1), rs10928560 near C-X-C motif chemokine receptor 4 (CXCR4), rs185932673 near Calcium/calmodulin-dependent protein kinase ID (CAMK1D) and rs9937053 near Fat mass and obesity-associated protein (FTO) - a variant previously associated with body mass index (BMI). In a BMI-adjusted analysis, an association was observed for rs10507084 near Rhabdomyosarcoma 2 associated transcript (RMST)/NEDD1 gamma-tubulin ring complex targeting factor (NEDD1). We found genetic correlations between OSA and BMI (rg=0.72 [0.62-0.83]) and with comorbidities including hypertension, type 2 diabetes (T2D), coronary heart disease (CHD), stroke, depression, hypothyroidism, asthma and inflammatory rheumatic diseases (IRD) (rg > 0.30). Polygenic risk score (PRS) for BMI showed 1.98-fold increased OSA risk between the highest and the lowest quintile and Mendelian randomization supported a causal relationship between BMI and OSA. Our findings support the causal link between obesity and OSA and joint genetic basis between OSA and comorbidities. Copy rights belong to original authors. Visit the link for more info

Team Cure
Team Cure Interview's Amanda Horton

Team Cure

Play Episode Listen Later Aug 3, 2020 8:40


Lindsey Pacios, the founder and president of Team Cure has had the absolute pleasure and honor to interview Amanda Horton. Amanda is 19 and is fighting Rhabdomyosarcoma. She is amazing, giving, and a very funny young woman who was a pleasure to chat with!

Team Cure
Team Cure's interview with Megan Bugg

Team Cure

Play Episode Listen Later Jul 4, 2020 10:22


Team Cure is so excited and amazed to have Megan Bugg on our podcast. Megan Bugg was diagnosed with Rhabdomyosarcoma, a soft tissue cancer when she was 13. Her bravery is amazing and inspirational. We had a lot of fun answering questions and playing would you rather!

The Patient is In
Saving Shani: A Father's Battle to Save His Daughter from Cancer

The Patient is In

Play Episode Listen Later Jun 18, 2020 22:06


After his family's battle with rhabdomyosarcoma, Oded launched MyChild'sCancer.org, a nonprofit dedicated to providing personalized mentorship, education and resources to parents and caregivers of children with cancer. My Child's Cancer developed a unique database that captures personal accounts of family's experiences with different treatments, medical facilities and best practices - stuff you won't find on Google. More about Oded Grinstein My Child's Cancer Profile in The Jewish Standard -----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data and learn more about Rhabdomyosarcoma and treatment effectiveness. Contribute to the ResearchMusic for The Patient Is In courtesy of Blue Dot Sessions.

The Orthobullets Podcast
Pathology⎪Rhabdomyosarcoma

The Orthobullets Podcast

Play Episode Listen Later Jun 6, 2020 13:22


In this episode, we review the high-yield topic of Rhabdomyosarcoma from the Pathology section. --- Send in a voice message: https://anchor.fm/orthobullets/message

RadioGraphics Podcasts | RSNA
Issue Summary 1: May-June 2020

RadioGraphics Podcasts | RSNA

Play Episode Listen Later May 5, 2020 26:23


Jeffrey S. Klein, MD, Editor of RadioGraphics, discusses six articles from the May-June 2020 issue of RadioGraphics. ARTICLES DISCUSSED: 0:26-0:24 Bone Marrow Edema at Dual-Energy CT: A Game Changer in the Emergency Department.  RadioGraphics 2020; 40:859–874. 4:10- 8:34 MRI of Rhabdomyosarcoma and Other Soft-Tissue Sarcomas in Children. RadioGraphics 2020; 40:791–814. 8:35- 12:23 Complications after Liver Transplant Related to Preexisting Conditions: Diagnosis, Treatment, and Prevention. RadioGraphics 2020; 40:895–909. 12:24- 17:31 Current Imaging Techniques for and Imaging Spectrum of Prostate Cancer Recurrence and Metastasis: A Pictorial Review. RadioGraphics 2020; 40:709–726. 17:32-21:46 Fundamentals of Radiation Oncology for Neurologic Imaging. RadioGraphics 2020; 40:827–858. 21:47-26:00 Venous Thrombosis and Hypercoagulability in the Abdomen and Pelvis: Causes and Imaging Findings. RadioGraphics 2020; 40:875–894. 

Living With Scanxiety
COVID & Cancer Treatment: A Mother's Inside Look

Living With Scanxiety

Play Episode Listen Later Apr 29, 2020 14:38


-031- Join me for an interview with Casey O Anaru, a mother of a baby who has Rhabdomyosarcoma. Mason, her son, and the family are navigating treatment and COVID. Tune in for an inside look.For Show Notes Visit:www.livingwithscanxiety.org/shownotes

A Woman’s Journey: Insights That Matter
Proton Beam Therapy for the Treatment of Tumors

A Woman’s Journey: Insights That Matter

Play Episode Listen Later Oct 29, 2019 25:07


The Johns Hopkins National Proton Therapy Center at Sibley Memorial Hospital opened its door the Fall of 2019.  Proton therapy is an advanced and highly precise radiation treatment for tumors and compared to other methods, focuses more energy on the tumor itself with less radiation to surrounding healthy tissue.  Proton beams can be used to treat: Sarcomas, particularly those in the base of the skull, spine or the retroperitoneum Breast cancer Prostate cancer Rhabdomyosarcoma, melanoma and other cancers around the eye Lung cancer and other thoracic cancers such as lymphoma or thymoma Head and neck cancer Liver cancer Pancreatic cancer Benign tumors Lillie Shockney interviews radiation oncologist Akila Viswanathan, who is the interim director for Johns Hopkins Radiation Oncology and Molecular Radiation Sciences, the director for the National Capital Region for radiation oncology, and a professor of radiation oncology and molecular radiation sciences for Johns Hopkins University School of Medicine.

Journal of Clinical Oncology (JCO) Podcast
How Should We Interpret Indeterminate Pulmonary Nodules at Diagnosis in Children With Rhabdomyosarcoma?

Journal of Clinical Oncology (JCO) Podcast

Play Episode Listen Later Feb 8, 2019 8:04


This JCO podcast provides observations and commentaries on the JCO article entitled "Indeterminate Pulmonary Nodules at diagnosis in Rhabdomyosarcoma: Are they clinically significant?"  A report from the European Pediatric Soft Tissue Sarcoma Study Group by Bas Vaarwerk, MD et al. My name is Alberto Pappo and I am the head of the division of solid tumors at St Jude Children’s Research Hospital in Memphis, TN. My oncology specialty is pediatric oncology.  In this report, Bas Vaarwerk, and investigators from the European Pediatric Soft Tissue Sarcoma Study Group evaluated the significance of indeterminate pulmonary nodules at diagnosis in children with rhabdomyosarcoma defined as the presence of less than 5 pulmonary nodules measuring less than 5mm or 1 pulmonary nodule that measured between 5 and 9 millimeters. This analysis included 316 patients who were enrolled on the EpSSG RMS 2005 study for non-metastatic rhabdomyosarcoma from September 2005 through December 2013 and for whom chest computed tomography scans were obtained at diagnosis and were available for review. Treatment in the EpSSG RMS 2005 study was stratified according to risk group, pathology, post-surgical stage, site, nodal involvement, size and age. All patients received multi agent chemotherapy with ifosfamide (except for low risk patients), vincristine and actinomycin D (IVA chemotherapy). High risk patients were randomized to IVA or IVA with doxorubicin and after 9 courses if in complete remission, were eligible for a second randomization between end of therapy and additional maintenance therapy with 6 courses of vinorelbine and cyclophosphamide Local control was determined by risk group, tumor site, age and response to therapy and radiotherapy was given at week 13 in doses ranging from 36 to 51.4Gy. All chest computed tomography scans were reviewed by the local radiologist at the treating center. Data was obtained and recorded using case report forms.  All computed tomography scans were performed with minimum slice thickness of 3 to 5 mm.  The median age at diagnosis for the 316 eligible patients was 5.4 years and the median follow up time for the cohort was 75 months.  There were 249 (78%) patients who did not have a pulmonary nodule and 67 (21%) who had at least one indeterminate pulmonary nodule. Patient and treatment characteristics were similar between the 2 groups; 80% of the patients presented with Group III  unresectable disease, 54% had high risk disease, and 71% had favorable histology tumors such as embryonal histology tumors.  Twenty four percent of patients received maintenance chemotherapy and 77% were treated with local radiotherapy A total of 100 nodules were identified in the 67 patients. Nodules ranged in size from 1 to 8 mm.  69% of the patients presented with one pulmonary nodule, 92% of the patients had nodules that measured less than 5 mm 85% of the nodules were unilateral. The 5-year event-free survival for patients with indeterminate pulmonary nodules was 77% and for those without nodules 73.2%. These differences were not statistically significant with a p value of 0.68. The 5-year overall survival rates were 82% for patients with indeterminate pulmonary nodules and 80.8% for those without nodules. The differences between these 2 groups were not statistically significant with a p value of 0.76.   There were no significant differences in outcomes based on the number or size of the nodules.  Similarly, there were no differences in clinical outcome based on histology, fusion status, age and type of chemotherapy received. Lung metastases developed in 3% of patients with indeterminate pulmonary nodules and in 1.6% of patients without nodules a value that was not statistically significant. The authors conclude that the presence of indeterminate pulmonary nodules in newly diagnosed children with rhabdomyosarcoma as defined in this report does not adversely affect the outcome of these patients and these children can be adequately treated with non-metastatic risk-based clinical protocols. This report highlights the challenges of assigning risk and therapy based on the presence of a limited number of small pulmonary nodules in children with newly diagnosed rhabdomyosarcoma when they are detected using newer imaging modalities such as thin cut computed tomography of the chest. The authors have successfully demonstrated in this retrospective study that newly diagnosed patients with rhabdomyosarcoma who present with indeterminate oligometastatic disease to the lung which in this study was defined as the presence of 4 or fewer pulmonary nodules measuring less than 5 mm or one nodule that measures 5 to 9 mm, have similar outcomes to patients who present without pulmonary nodules. More importantly, these patients can be treated with less intense trials that may include the use whole lung irradiation which is known to significantly increase the risk of breast cancer in childhood cancer survivors. The authors have implemented a standardized definition for indeterminate oligometastatic lung disease which is highly reproducible and easily implemented.  Their results are thought provoking and deserve further validation in a well- designed prospective clinical trial. Because of the lack of pathologic correlation with imaging findings in this report, it is not possible to determine which patients truly had oligometastatic disease to the lung. It is conceivable that some of the 67 patients with indeterminate nodules did not have actual metastatic rhabdomyosarcoma in the lung, or alternatively these results may also indicate that current risk-based therapies for localized disease are effective at eradicating small oligometastatic disease. It is important to point out however, that in this report, about one fourth of the patient population was assessed using reconstruction widths of ≤ 1.25 mm, which might have identified a larger number of small nodules of uncertain significance. In addition, 69% of the patients with indeterminate nodules had only one nodule, 92% had nodules that measured less than 5 mm and 85% had unilateral disease.  All of these factors have been associated with a significantly lower likelihood of identifying biopsy proven metastatic disease in pediatric patients with sarcomas. These findings raise questions as to whether thin cuts < 5mm in thickness are of any value in the assessment of pulmonary metastases in children with rhabdomyosarcoma. In summary, this report opens new areas for clinical research that could lead to a uniform strategy for defining metastatic pulmonary disease in pediatric rhabdomyosarcoma and a more precise method for  risk-stratifying disease in this patient population.   This concludes this JCO Podcast. Thank you for listening.

MichMash
Zach Brock

MichMash

Play Episode Listen Later Jan 4, 2019 26:07


Zach and I talk about kudos to mom, Stage 4 Rhabdomyosarcoma, mouth pain, 20% chance of survival, stem cell rescue, hair as a reproducing cell, late effects clinic, St. Louis Children's Hospital, SSM Cardinal Glennon Children's Hospital, grass root funding, St. Louis University, cancer was my life, people really do care, cook good food, roots of music, introvert extrovert, DJ Chesta, flex, overcome, learn and dwell.

Mile High Magazine Podcast
Mile High Magazine 10/21/18 Brent's Place

Mile High Magazine Podcast

Play Episode Listen Later Oct 22, 2018 30:03


Guest: Lexie Hennen, Development Associate Brent's Place and Elliana and Sonja Chavez. Brent's place started in 1997 by the Eleys as a tribute to their son Brent who passed away from Rhabdomyosarcoma. Today Brent's Place serves as a medical hospitality house and addresses the special needs of a niche in the pediatric oncology/hematology treatment community that would otherwise go unserved. Brent's Place provides Rocky Mountain region families who travel far from home with increased access to medical care options, as well as relief from the staggering emotional, financial and physical burdens they face. https://www.brentsplace.org/    See omnystudio.com/listener for privacy information.

Cancer.Net Podcasts
2018 ASCO Annual Meeting Research Round Up: Childhood Cancers, Older Adults, Multiple Myeloma, and Lung Cancer

Cancer.Net Podcasts

Play Episode Listen Later Aug 22, 2018 23:39


ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer. 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. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses. The ASCO Annual Meeting brings together physicians, researchers, patient advocates, and other health care professionals to discuss the latest in cancer care. The research presented at this meeting frequently leads to treatment advances and new ways to improve the quality of life for people with cancer. In today’s podcast, Cancer.Net Associate Editors share their thoughts on the most exciting and practice-changing news to come out of the 2018 ASCO Annual Meeting. First, Dr. Daniel Mulrooney will discuss a large international study on maintenance chemotherapy for rhabdomyosarcoma, and several studies on the benefits of physical activity for survivors of childhood cancer. Dr. Mulrooney is an Associate Faculty Member in the Division of Cancer Survivorship at St. Jude Children’s Research Hospital. He is also the Cancer.Net Associate Editor for Childhood Cancers. Dr. Mulrooney: This is Dr. Dan Mulrooney from St. Jude Children's Research Hospital. I'm the Deputy Director of the After Completion of Therapy Clinic at St. Jude and primarily care for survivors of pediatric solid tumors. During this year's Annual Meeting of the American Society of Clinical Oncology, a very interesting, large, international study investigating maintenance treatment for rhabdomyosarcoma was highlighted during the plenary session. Maintenance chemotherapy, or prolonged low-dose chemotherapy, is used most frequently in the treatment of acute lymphoblastic leukemia, or ALL, but less so for pediatric solid tumors. In a study conducted by the European Paediatric Soft Tissue Sarcoma Study Group that included patients from 14 different countries, investigators studied adding maintenance chemotherapy to the treatment of high-risk rhabdomyosarcoma. Rhabdomyosarcoma is a rare tumor, which mostly occurs in children but can also present in adults. Fortunately, treatment is often successful. But up to 20 to 30 percent of patients may still relapse after treatment meaning additional treatment is needed and making long-term cure more difficult. Standard treatment involves 6 to 8 months of intensive chemotherapy, radiation, and surgery. These investigators wanted to know if adding additional low-dose chemotherapy for six months after standard treatment might improve survival. They studied patients greater than 6 months to less than 21 years of age with high-risk disease based on the histology and location of their tumors. 186 patients were randomized to standard therapy. And 185 were randomized to receive the additional 6 months of maintenance chemotherapy, which included vinorelbine given IV, weekly, for 3 weeks every month, and cyclophosphamide taken orally everyday. And at 5 years, the overall survival was statistically better in the maintenance chemotherapy group, 87% versus 74% in the standard therapy group. Fortunately, toxicity from the additional chemotherapy was minimal and mostly included low blood counts, although approximately 30% of patients also had an infectious complication. These investigators concluded that this additional maintenance therapy is an effective and well-tolerated strategy for patients with high-risk rhabdomyosarcoma and proposed to investigate this method in other solid tumor types. Now additionally, a number of studies presented at the meeting highlighted the importance of physical fitness among childhood cancer survivors. A study from the University of New South Wales in Sydney, Australia collected physical activity data from the parents of childhood cancer survivors and a control population. Fortunately, the parents of survivors reported more physical activity in their children than the control parents with 31% of survivors meeting the recommendations of the American Cancer Society for moderate to vigorous physical activity, which is greater than or equal to 300 minutes of activity per week. However, nearly two-thirds of survivors did not meet the recommended activity level. Subsequently, a large study from the St. Jude Lifetime Cohort assessed 577 childhood cancer survivors, and 286 healthy community controls. In this study, individuals underwent a series of tests including an echocardiogram and cardiopulmonary exercise testing on a treadmill. Measures of relative peak oxygen uptake or “VO2 max” were obtained to assess exercise capacity. Survivors had a lower VO2 max compared to controls, and this worsened with increasing intensity of previous exposure to cardiotoxic therapies such as anthracyclines and chest radiation. This was also associated with a relatively new measure on echocardiography called global longitudinal strain. In fact, global longitudinal strain, and not the more common measure of ejection fraction, was associated with impaired VO2 max among cancer survivors. Global longitudinal strain may become an important new screening marker for cancer survivors. And finally, 2 studies from the Childhood Cancer Survivor Study, or CCSS, highlighted the importance of exercise for childhood cancer survivors. The CCSS is a multi-institutional study that uses questionnaires to assess outcomes among a large population of cancer survivors from across North America. Investigators collected data on physical activity, classified as metabolic equivalent tasks, or METs, and expressed as MET-hours per week. Exercise levels were categorized into groups ranging from none or 0 MET-hours per week and increasing incrementally to 3 to 6, 9 to 12, and 15 to 21 MET-hours per week. 3 to 6 MET-hours per week is equivalent to approximately 20 minutes of brisk walking per week, and 15 to 21 MET-hours per week is equivalent to approximately 60 minutes of brisk walking every day for 5 days per week. And in the first study, investigators showed a decrease in psychological burden among cancer survivors, decreased depression and somatization, and improvements in quality of life and cognitive function among those with increased levels of physical activity. As little as 20 minutes of brisk walking per week was associated with this lower psychological burden. Importantly, in a longitudinal analysis, CCSS investigators showed a decrease in mortality with increasing intensity of physical activity. And looking over eight years, survivors who increased their level of exercise had a 40% reduction in the rate of death compared to those who maintained a low level of exercise. Taken together, these studies presented at the 2018 ASCO Annual Meeting highlight the safety and significant health and psychological benefits of exercise for survivors of childhood cancer. ASCO: Thank you Dr. Mulrooney. Next, Dr. Hyman Muss will discuss a study on a tool that can be used to improve communication between older adults with cancer and their doctors. Dr. Muss is a Professor of Medicine at the University Of North Carolina School Of Medicine, and the Director of the Geriatric Oncology Program at the University of North Carolina Lineberger Comprehensive Cancer Center Program. He is also the Cancer.Net Associate Editor for Geriatric Oncology. Dr. Muss: My name is Hy Muss, and I'm a medical oncologist with a major interest in geriatric oncology. And today I'm going to talk about what I think is 1 of the most exciting studies I've seen in years pertaining to cancer care in older patients, an ASCO presentation by Dr. Supriya Mohile and our colleagues on a large, randomized trial they did, focused on improving communication of older patients with their physician. So this was a very large PCORI-funded trial in the United States, a federally funded study for patients 70 and older with a whole variety of different cancers. And in this study, what happened were older patients were either randomized to an intervention, which included giving a questionnaire, a geriatric assessment, that asked about function and all types of other issues related to older people, social support etc. And together with that information, there were recommendations for the doctor to talk with the patient about, such as if they had poor social support, maybe get them to a senior facility. Or if they had problems getting meals, set up meals on wheels. Or if they had a physical handicap, get them to physical therapy to try to overcome it. So that was all provided to the doctor. And the second group of patients just got kind of very little information sent to the doctor. And so what happened in this trial, which was extremely exciting, was that they had 500 patients accrued to this, so this is a huge number of patients. And about half were given the intervention arm and half were just routine care. And it showed that the patients who went through the intervention, and that information was provided to the doctor, had much better communications with the doctor about their illnesses, about their cancer care. And more importantly, it led to interventions that were very helpful and that probably improved their quality of life and physical well-being, although, these data were not reported in the presentation. And this is really special, because the standard care arm, a lot of things were not discussed, and a lot of things that older patients had may not be related to their cancer but are extremely important for the oncologist to know. And these are things like, "How are you doing at home? Are you able to care for yourself? Do you pay your bills? Do you have good social support? Can you go to the grocery store, etc.? Also, what are your friends like? What are your family like? Do you have people interested in you that take you out, do things?" And frequently, those issues aren't discussed, and they're integral to the care of older people. So they showed the value of a geriatric assessment, which discovers many more things than the usual questions doctors ask you in 1 or 2 sentences about your function. And more importantly, they improved care, they improved communication, and they led to interventions that make people's lives better, and perhaps, someday a lot longer. So I thought this was a terrific study. Dr. Mohile and her colleagues broke the glass on showing how important geriatric assessment—where we ask questions about your function, about your health and other things, that are generally not part of a routine history and physical—how important this is to improving care. So I hope you take a look at this at the ASCO site. It's a wonderful trial, and I think it's the beginning of many more similar trials to come. Thank you. ASCO: Thank you Dr. Muss. Next, Dr. Michael Thompson will discuss several topics in multiple myeloma that were explored at the 2018 ASCO Annual Meeting, including a discussion on the cost and value of myeloma drugs, a study that compared different doses of a treatment for relapsed refractory multiple myeloma, and several studies that explored ways to personalize myeloma treatment, also known as precision medicine. Dr. Thompson is a hematologist/oncologist, and the Medical Director for the Early-Phase Cancer Research Program and the Oncology Precision Medicine Program at Aurora Health Care in Wisconsin. He is also the Cancer.Net Associate Editor for Multiple Myeloma. Dr. Thompson: Hello. I'm Mike Thompson, a hematologist/oncologist at Aurora Health Care of Wisconsin. I'm also the Associate Editor for Cancer.Net on myeloma. Today, I'm going to discuss a few myeloma-related areas reported at the ASCO 2018 Annual Meeting. The first is a value debate, which was on Sunday, between Mayo colleagues and friends, Dr. Fonseca and Dr. Rajkumar, who had discussed the question of costs and value in multiple myeloma in this session, Global Myeloma, Health Disparities, and the Cost of Drugs. They disagreed on some issues. But my take-home from their debate was that both the absolute costs of care as well as value, which was utility divided by cost, are important to our entire healthcare system as well as to patients and their families. There was no immediate changes to costs of care after that debate, but I think it's something important that we will all be watching as new drugs are developed in the future. Another important study was the A.R.R.O.W. study, which was reported on by Dr. Mateos, and was later published with the first author, Dr. Moreau. This was a phase III study of 2 different doses of carfilzomib with dexamethasone in relapsed and refractory myeloma patients. So there was the traditional twice-weekly dose, and there was the once-weekly dose. And the conclusions were that the once-weekly dose with a dose up to 70 milligrams per meter squared improved progression-free survival and overall response rate. And later in the publication, it showed that it improved survival versus the twice-weekly dose at 27 milligrams per meter squared, with a similar side effect profile. So that is very good news for patients that might get that doublet therapy and have to come into the office less frequently. The caveats with that study are that this dosing was not compared to an intermediate dose of 56 milligrams per meter squared, which has been widely used after that study was published a few years ago. So it's looking at the lowest dose versus the highest dose. And it's also for patients with a performance status of 0 to 1, which means they're doing well. And for many of those patients, we wouldn't use a doublet therapy; we'd use a triplet therapy. So that may limit the applicability in practice, at least, in the United States. And we also don't know that combining this Kd regimen with another myeloma drug is safe or effective, so those studies are ongoing. And the third topic that was of interest at ASCO 2018 was precision medicine in multiple myeloma. So there were at least 3 parts to this. One is risk stratification. And this has been going on for a while, looking at the cytogenetics and FISH. And the NCCN and Mayo mSMART guidelines give some guidance on how to treat based on risk. Also there was talk about the CAR-T therapies, which may be the most specific or precision type of medicine you can get. And those studies are ongoing but not yet widely available for myeloma, but everyone is very interested in those data. Other therapies were targeted therapies, and there are not as many examples in multiple myeloma as there are in some diseases like lung cancer. But there are some alterations such as BRAF, where BRAF inhibitors are used or can be used in a few patients, in myeloma that have that. And there's great excitement about the BCL-2 inhibitor or venetoclax for t(11;14), which is the most common translocation found in multiple myeloma. So those are some of the main things I took away from this ASCO meeting. We really need to think about costs and value and the impact it has on our patients. We need to think about trying to dose drugs in ways that are more convenient to patients, and in this case, seemed to be more beneficial. And we have to keep looking ahead to do more things with targeted therapies to see if we can get away from some of the toxicities of some of our chemotherapy agents. Coming up will be more studies over the next year for ASCO 2019, and I look forward to seeing what changes between now and then. ASCO: Thank you Dr. Thompson. Finally, Dr. Jyoti Patel will discuss the ongoing research in targeted therapy and precision medicine for lung cancer. Dr. Patel is Professor of Medicine and Director of Thoracic Oncology at the University of Chicago and is the Cancer.Net Associate Editor for lung cancer. Dr. Patel: Hello. I'm Jyoti Patel. I'm the Director of Thoracic Oncology at the University of Chicago and a long-time ASCO member, and I would like to talk to you today about some of the most important research takeaways from our recent ASCO Annual Meeting. So remember, this is a meeting where about 40,000 cancer care providers come together to discuss and to present the most groundbreaking research and its impact for patients. So this is certainly a meeting that is exciting for all of us and really represents, I think, the best of what's happening in the field. I think when we look at what's happening with lung cancer—because there's so many people affected with lung cancer in the United States where nearly 200,000 people every year are diagnosed with lung cancer—we can say that we've made significant leaps forward in the past decade, and it's really changed the paradigm in how we treat patients with advanced disease. So it's a disease in which systemic therapy is really the mainstay of therapy because it's not confined to the lung where we may do surgery or radiation, this is really a disease that has spread and is treated as a more chronic condition. Our efforts at understanding the biology of cancer have really now come back to the bedside, and many of the groundbreaking research trials that were presented really revolved around this idea of personalization of therapy based on biomarkers. Understanding the cancer genome now has a direct impact for our patients. When patients are diagnosed with advanced disease, I think all of these studies point to the fact that we need to have adequate characterization of the tumor. So it's no longer okay to say my patient has non-small cell lung cancer, which is the most common kind of lung cancer, it's really incumbent upon the oncologist, and pathologist, and pulmonologist, and surgeon to come together and further define whether or not there are particular mutations that would serve as good targets for drugs, or whether this is an inflamed tumor and may be best treated with immunotherapy. When someone's diagnosed with lung cancer, I know it's often difficult for a patient, or family member, to first meet the oncologist and say yes, we have this diagnosis, but I'm waiting for additional tests. But that time that it takes to do this testing—and it's very complex, we look at anywhere from 3, at the very minimum, to almost 1,000 genes at my institution's program—in which we try to match particular drugs with therapies. And the reason we do this is because in about 30 or 40 percent of patients with non-small cell lung cancer that's non-squamous, the most common kind, we're able to find an easily druggable target. So we find EGFR and ALK and ROS1, and so we've got updates on all of those targets at ASCO. But this year there was really a lot of excitement about a new target called the RET fusion protein and when 2 chromosomes sort of flip-flop and form a protein that causes this cancer to grow. Now this is uncommon, and medically it affects about 1 to 2 percent of patients with lung cancer, but when you look at the enormous burden of lung cancer, that's thousands of patients a year. What we found was that there's a really selective drug that targets this protein and can shut down the cancer cells and cause deep responses, so almost 80 percent of patients with significant reduction in their tumor and lung responses with an oral tablet that's very well-tolerated. The idea is that we need to absolutely try to do a biopsy, understand if there are multiple markers, and that list continues to grow for which there are druggable targets. And there was a lot of excitement about drugs that target genes such as the MET exon 14 oncogene, or something that's been very elusive for some time, the EGFR exon 20 mutations. These are single sort of base misreads in our DNA that causes cancer to grow, but if 1 patient has this target, and we're able to deliver a drug that causes patients to have nice responses and a return to wellness, I think that's great for all of us. Often getting the right tissue is tough because sometimes we just don't have enough tissue. And, certainly, we've seen considerable progress with liquid biopsies in recent years, and there's been good concordance between blood-based biopsies as well as tissue, and so our field is rapidly evolving in ways that we can bring the best drugs to the best patients. We're starting to do this with immunotherapy. There's a protein called PD-L1 which helps us assign appropriate therapy for patients. And so if someone has a high PD-L marker on their tumor, those patients may get immunotherapy alone with an expectation that they would have a nice response and durable disease control with good quality-of-life. So with effort to really characterize tumors, although it can be difficult when someone's first diagnosed to wait to get all these markers right, which is on the order of about 2 to 3 weeks, the downstream effects of characterizing the tissue and getting the right drugs to the right patients are really enormous because we are able to see patients that return to wellness. Certainly this was an exciting meeting. And I think more and more we're seeing not only medical oncologists, but patients and patient advocates, understanding the importance of biopsies, and an incredible effort by industry, as well, to really make these assays and these tests more accessible to patients, and to make the turnaround times even faster, and to use less tissue to get the right answers. I'm optimistic that we'll continue to see this trend, and there will be more and more drugs that will be optimized for particular patients. ASCO: Thank you Dr. Patel. If this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play. To learn more about all of the science presented at the 2018 ASCO Annual Meeting, visit www.cancer.net/ascoannualmeeting. If you have questions about whether new research may affect your care, be sure to talk with your doctor. Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

WEEI/NESN Jimmy Fund Radio-Telethon
OMF - Madison "Madie" Miller, 17, rhabdomyosarcoma, Brimfield with her mother, Deanna Kaplan 8-21-18

WEEI/NESN Jimmy Fund Radio-Telethon

Play Episode Listen Later Aug 21, 2018 5:54


Madie met OMF when they visited the Jimmy Fund Clinic earlier this summer.In 2016, Madie went to the doctor after having a fever and chills. It was there that her tumor was discovered. Madie was in treatment for a year but relapsed in February 2018 after being off treatment for about a year. She's received 7 cycles of IV chemotherapy thus far, a total of 12 cycles altogether, and had some radiation in May 2018.Madie's hobbies include doing makeup, photography, sports, reading and blogging. In the future, Madie wants to become a travel nurse or oncologist.She is currently writing a blog on Instagram to help other kids going through cancer or hard times find support. She loves sharing her experiences in the goal of helping others. Madie is supported by her loving family, including her mom, Deanna, step-dad, Chad, brother, Brodie, 7, and sister, Mackenzie, 19.

Journal of Clinical Oncology (JCO) Podcast
The Addition of Another Camptothecin Fails to Improve Outcomes in Patients With Intermediate-Risk Rhabdomyosarcoma

Journal of Clinical Oncology (JCO) Podcast

Play Episode Listen Later Aug 9, 2018 10:56


Read the related article "Addition of Vincristine and Irinotecan to Vincristine, Dactinomycin, and Cyclophosphamide Does Not Improve Outcome for Intermediate-Risk Rhabdomyosarcoma: A Report From the Children's Oncology Group" on JCO.org This JCO podcast provides observations and commentary on the JCO article “addition of vincristine, irinotecan to vincristine, dactinomycin and cyclophosphamide does not improve outcome for intermediate risk rhabdomyosarcoma a report from the Children’s Oncology Group by Hawkins, et al.” My name is Alberto Pappo and I am a pediatric oncologist and Head of the Division of Solid Tumors at St Jude Children’s Research Hospital in Memphis, Tennessee. Investigators of the Children’s Oncology Group (COG) developed a prospective randomized study to improve the outcome of patients with intermediate risk rhabdomyosarcoma by comparing the addition of the doublet vincristine and irinotecan (which will be called the irinotecan arm) to standard vincristine actinomycin D and cyclophosphamide (which will be called the VAC arm) to VAC chemotherapy only. Intermediate risk disease comprises the largest subgroup of patients with rhabdomyosarcoma and comprises patients with embryonal histology who present with tumors that are non-metastatic and unresected and arise in unfavorable sites as well as patients who present with non-metastatic alveolar histology tumors. The authors nicely review prior failed strategies that were aimed at increasing the outcome of this group of patients including dose intensification of active agents as well as the  addition of novel agents such as ifosfamide, etoposide and topotecan. 1-3 Irinotecan is a prodrug that is converted to its active metabolite SN38 and inhibits topoisomerase I. In a front-line trial for patients with metastatic rhabdomyosarcoma demonstrated a high level of activity with a 70% early response rate and an 8% disease progression rate.4 Based strong preclinical and clinical data, this agent was incorporated into an upfront randomized trial for rhabdomyosarcoma testing the benefit of adding vincristine and irinotecan to standard VAC in intermediate risk rhabdomyosarcoma. Eligibility criteria included patients with embryonal rhabdomyosarcoma who had stage II and III clinical Group 3 disease and any alveolar rhabdomyosarcoma without evidence of distant metastases.  During the first 12 weeks the two treatments were identical in duration of schedule with the exception of the substitution of irinotecan for dactinomycin and cyclophosphamide at week 4 and for cyclophosphamide at week 7 and 10 in the irinotecan arm.  During the next 30 weeks irinotecan replaced actinomycin D and cyclophosphamide at weeks 16, 19, 25, 31 and 37 in irinotecan arm.  Patients were evaluated for response at week 15, 30 and at the end of therapy.  Radiation therapy unlike the prior COG D9803 trial  started early at week 4 instead of 12 and the dose was determined by the clinical group and histology with doses ranging to 36 Gy for those with clinical group I and II to 50.4Gy for those with Group III disease. The study was designed with an 80% power to detect an overall increase in the long term event-free survival from 65% with VAC chemotherapy to 76% with the doublet VAC VI with a sample size of 486 patients.   Between December 2006 and December 2012 there were 481 patients enrolled on the study of whom 33 were ineligible.  Of the remaining 448 eligible patients 222 were randomized to VAC and 226 were randomized to the irinotecan arm.  The patient’s characteristics were similar between both arms and to other COG trials. There was a slight predominance of males, 61% of patients were between 1 and 10 years of age and 71% were Caucasian.  Embryonal rhabdomyosarcoma was the predominant histology seen in 53% of the patients and 86% had clinical Group III disease. The most common primary site was parameningeal followed by bladder prostate, extremity and retroperitoneum.    With a median followup for surviving patients of 4.8 years the estimated 4 year event-free survival was 63% for the VAC arm and 59% for the irinotecan arm.  The estimated 4 year overall survival rates was 73% for the VAC arm and 72% for the irinotecan arm. There were no differences in radiographic response among clinical Group III patients as assessed by institutional report by week 15 and no evidence of differences in outcome by treatment arm in the histologic subgroup analysis.  When compared to the previous trial D9083 which had slightly different eligibility criteria, there were no differences in event and overall survival for patients with alveolar rhabdomyosarcoma. However, patients with embryonal tumors had an inferior 4 year event-free survival in this trial when compared to patients in D9803 although the 4 year overall survival rates were similar.  The vast majority of treatment failures were due to tumor progression or recurrence. The 4 year local failure rate was 22.4%, the 4 year regional lymph node failure rate was 5.7% and the 4 year distant failure rate was 18%.  Hematologic toxicity and febrile neutropenia were more commonly observed in the VAC arm whereas diarrhea and mucositis were more prevalent in the irinotecan arm. Hepatopathy was more common in the VAC arm and patients in the irinotecan arms who developed grade 3 4 diarrhea were more likely to carry the UGT1A1  7/7 genotype.  The authors conclude that the addition of vincristine and irinotecan to a VAC backbone failed to improve the outcome of patients with intermediate risk rhabdomyosarcoma. However, the lower cumulative doses of cyclophosphamide in the irinotecan arm which could potentially reduce the risk of infertility in selected patients and the lower rates of hematologic toxicity in this regimen have provided a rationale for the COG to use a VAC irinotecan backbone in their current up front randomized trial for intermediate risk rhabdomyosarcoma.   This trial highlights the lack of significant advances in the therapy of pediatric rhabdomyosarcoma despite the fact that irinotecan showed significant preclinical and clinical activity in metastatic patients with this disease.5,6 Similarly, in a previous study, the addition of another camptothecin, topotecan failed to improve the outcome of intermediate risk patients despite promising clinical activity in newly diagnosed metastatic patients 7suggesting that identification of novel agents based on their activity in  phase II window studies for high risk rhabdomyosarcoma is not an optimal method for selecting active compounds that could be incorporated into front-line studies for intermediate risk disease. As suggested by the authors of the paper just discussed, other novel mechanisms of drug testing such as randomized phase II studies in recurrent disease might offer alternative more effective strategies for identifying agents to be tested in intermediate risk patients. In contrast to this results, the European Pediatric Soft Tissue Sarcoma Study Group has recently reported at the ASCO 2018 meeting improved outcomes for a similar population of patients when maintenance therapy with low dose cyclophosphamide and vinorelbine is added to a backbone of vincristine, ifosfamide and actinomycin D (VAI). 8  In this trial, patients with non metastatic incompletely resected embryonal rhabdomyosarcoma arising in unfavorable sites and localized alveolar rhabdomyosarcoma without nodal metastases who achieved a complete remission after 9 cycles (27 weeks) of VAI with or without doxorubicin were randomized to stop treatment or receive maintenance chemotherapy with six 28 days cycle of vinorelbine and cyclophosphamide.  The study was initially designed with an 80% power to detect an increase in the 3 year EFS from 55% to 65% with a hazard ratio of 0.67 but was then amended to allow detection of a relativity reduction rate in the relapse rate of 50%.  This trial accrued 670 patients of whom 371 were eligible and 186 were assigned to the standard arm and 185 to the maintenance arm.  The clinical features were well balanced between the two groups. With median follow up of 5 years in surviving pts, the 3 year event-free survival and overall survival in the maintenance arm and the standard arm were  78.4% vs 72.3% (p value 0.061) and 87.3% vs. 77.4 (p value = 0.011).  The investigators concluded that the addition of maintenance therapy is a novel strategy that improves the outcome of this group of patients with rhabdomyosarcoma and establishes the new standard of care for patients in Europe.  The results of this trial however, need to be interpreted with caution and cannot be generalized. The follow-up of patients is relatively short and only those who achieved a complete radiographic response after chemotherapy were eligible to be randomized, no information was provided regarding outcomes of patients who were randomized to receive doxorubicin, there are only 9 cycles of chemotherapy given prior to randomization to maintenance therapy whereas the COG studies give 14 cycles of therapy and finally, there are slight differences in the eligibility criteria when compared to the previous COG  trials.    In conclusion, the addition of an irinotecan backbone to standard VAC chemotherapy does not improve the outcome of patients with intermediate risk rhabdomyosarcoma. However, the irinotecan containing regimen offers potential advantages such as outpatient administration of chemotherapy, reduced hematologic toxicity and cumulative cyclophosphamide exposure and has therefore become the standard backbone for patients with intermediate risk rhabdomyosarcoma in the United States.  This concludes this JCO podcast.  Thank you for listening.    

5FM Podcasts
30 Dreams 30 Days - Jordan (Day 7)

5FM Podcasts

Play Episode Listen Later Jun 7, 2018 5:56


5FM — JORDAN is an 8 year old boy who lives in Muizenberg. He loves going to school, playing with cars, animals, and spending time with friends. Jordan has been diagnosed with Rhabdomyosarcoma, and unfortunately his condition is getting worse. Thanks to Woolies and MySchool for making this young ‘man’s dream come true – you can continue to make dreams come true by swiping your MySchool card and selecting Reach for a Dream as a beneficiary

Cancer Newsline - Audio
Rhabdomyosarcoma

Cancer Newsline - Audio

Play Episode Listen Later May 7, 2018 6:13


Rhabdomyosarcoma is a rare type of cancer. Although associated with children, the disease is also present in adults where it poses unique treatment challenges. In this episode of Cancer Newsline, Andrea Hayes-Jordan, M.D., talks about rhabdomyosarcoma in both pediatric and adult patients.

Courage, Humor and Grace
A Faith That Heals

Courage, Humor and Grace

Play Episode Listen Later Feb 19, 2018 67:26


What if you prayed for a baby for 7 years and your dreams finally came true? Now what if 3 years later that dream turned into your worst nightmare and you were told the baby you prayed for has cancer? That's exactly what happened to Joanmarie Gonzalez and her husband, Ubaldo. Listen to their story as they go from feeling lost, betrayed and afraid to finding a faith that heals.  #TeamLeila  Light and Love, Michelle  

Integrative Answers to Cancer
033: How Angie Avoided Unnecessary Treatments and Beat Rhabdomyosarcoma in Her Son

Integrative Answers to Cancer

Play Episode Listen Later Nov 30, 2017 47:08


When Angie’s son was diagnosed with rhabdomyosarcoma she hit the ground running.  She was in touch with My Kid Cures Cancer and implementing an integrative approach within a week!  She tells us about how questioning everything and pushing back against treatments saw her son Cullen through to cancer freedom with much less treatment than doctors originally prescribed!   Highlight article & Video Interview www.mykidcurescancer.com/Angie-Vitter How to live an anti-cancer life: www.youtube.com/mykidcurescancer www.facebook.com/mykidcurescancer

WEEI/NESN Jimmy Fund Radio-Telethon
Paul Miranda, 26, rhabdomyosarcoma Boston

WEEI/NESN Jimmy Fund Radio-Telethon

Play Episode Listen Later Aug 16, 2017 10:30


Paul was diagnosed with rhabdomyosarcoma, a soft tissue cancer, in February 2015. A small lump that his doctors told him was nothing to be concerned about eventually turned into a much bigger lump that had to be surgically removed. Doctors initially informed Paul and his family that the lump was benign, but they were mistaken. Paul's doctors called him back a week later and informed him that they were wrong and that it was in fact a very rare form of cancer called Rhabdomyosarcoma. Paul had two difficult surgeries to try and remove his visible tumors but was told he needed further treatment.

Life on Purpose
70: Robyn Ivy- Shift Your Focus: Personal Transformation Through a New Lens

Life on Purpose

Play Episode Listen Later Apr 20, 2017 69:33


For Life on Purpose Episode #70, my guest is transformational photographer and coach Robyn Ivy, who has 20 years of experience helping clients transform themselves by shifting their focus and learning to see their world through a new lens. Robyn joined me for an inspiring conversation about photography as a tool for transformation (a conviction I share), her life and work, and PROJECT 3.8, the compelling campaign she started to raise awareness for pediatric cancer. Robyn brings a deep understanding of what holds people back and brings it into the light so it can be seen and overcome. "Have you ever stopped to consider that the way we look at and experience our world is often done by default? Did you know that our vision can be strengthened, like a muscle, and when we exercise it, it transforms, changing the way we view our world and ourselves?" About Robyn: Much like the world around us, I am constantly evolving—driven by an intense passion to help businesses and individuals transform themselves by learning to see their world through a new lens. As a professional photographer, visual brand strategist, creative director, speaker and coach, I explore opportunities from a variety of perspectives that help my clients see the possibilities, truths and solutions to problem that remain invisible others. For nearly two decades, I have encouraged others to step outside the box, shifting their focus to tell a different story about themselves; one in which the heart of who they are and what they stand for shines through for all to see. The impact of storytelling is very real, and I pride myself on uncovering the deeper message behind my clients’ brands and communicating it to the world through powerful imagery. In 2016, I created Project 3.8, a compelling visual campaign to raise awareness for pediatric cancer, born from the heartache of a close friend losing her 8-year-old son to Rhabdomyosarcoma. I produced a traveling gallery of 20 large scale metal portraits of children ages 3-18 who were either active in their fight against cancer or celebrated survivors. The show’s inspiration, Dorian J. Murray, was our only angel. While I learned much from this experience, my mission was simple: to teach people to “see” childhood cancer in a different light and the impact is has on far too many families. Project 3.8 moved thousands of people and, I’m happy to say, will be an annual event. I share this with you because of how passionate I am about helping people see themselves and their cause from new and unexpected vantage points. When you understand what holds people back and bring it to the forefront so it may be overcome, there’s truly no limit to what you can accomplish. Whether you’re looking to create new pathways to growth, increase ROI, find innovative solutions to difficult problems, or guide others in the direction of our true purpose to make a difference in this world, I want to be part of that journey. I want to be part of your journey. Through my photography, I shoot for a wide range of commercial, corporate and editorial clients, as well as entrepreneurs and those who want to change the world. I also offer workshops and speaking presentations on how to transform your business, your brand or your life by changing your viewpoint. Now that I’ve told you about what I do, I’d like to tell you a bit about who I am. Though I’m a native New Englander, in my heart, I am a citizen of the world. At 15, I spent a year in Germany as an exchange student and it changed my life! Traveling became embedded in my DNA and I spent my youth finding ways to see more of the world. A free spirit by nature, I love a great road trip and the kindred spirits you meet along the way. Long before I was a professional photographer, I worked with baby chimpanzees in Africa, led German tourists on adventure camping trips in Alaska and beyond, taught English to folks in Europe, and spent a year working my tail off with an anti-hunger coalition in Vermont. In 2001, I became a mom and began life’s most valuable journey: raising my two boys, who have quickly (yet not quietly) become teenagers. I'm pretty obsessed with Instagram and I’ve promised myself that one day, I will learn how to knit! To learn more about Robyn's work, visit: http://www.robynivy.com/.  

Pawprint | animal rescue podcast for dog, cat, and other animal lovers
43: Paul Griffin, Author, When Friendship Followed Me Home: Tales of Travelers and Magicians

Pawprint | animal rescue podcast for dog, cat, and other animal lovers

Play Episode Listen Later May 26, 2016 38:06


Author Paul Griffin has written six books with two more on the way. His sixth work, When Friendship Followed Me Home, is his first work aimed at the young teenager (ages 10+), and is set to be released on Tuesday, June 7. Paul shares amazing stories about the writer’s life and what inspires him: animal rescue, growing up in New York City, and the many people he has met and often helped. He lives in New York City with his wife, filmmaker Risa Morimoto, and several rescue dogs, including Ray Liotta the Pit Bull. Website http://paulgriffinstories.com Facebook https://www.facebook.com/paulgriffinstories/ Website Page Dedicated to the Book http://paulgriffinstories.com/when-friendship-followed-me-home/ [Amazon] When Friendship Followed Me Home http://www.amazon.com/When-Friendship-Followed-Me-Home/dp/0803738161 When Friendship Followed Me Home’s main characters include Ben Coffin; Halley, also known as Rainbow Girl; and Flip, Ben’s rescue dog. photo credit: Risa Morimoto Resources Fort Tryon Park was created on land John D. Rockefeller, Jr. purchased and was designed by The Olmstead Brothers. https://www.nycgovparks.org/parks/fort-tryon-park The Cloisters is located in Fort Tryon Park and is a branch of the Metropolitan Museum of Art. It’s a very serene setting, especially in the midst of New York City, to learn about Medieval Art and Architecture. http://www.metmuseum.org/visit/met-cloisters Matt de la Peña won the Newbery Medal for American children’s literature for his book, Last Stop on Market Street http://www.ala.org/alsc/awardsgrants/bookmedia/newberymedal/newberymedal Goodfellas is the 1990 Martin Scorsese film about organized crime starring Robert DeNiro, Ray Liotta, and Joe Pesci. http://www.imdb.com/title/tt0099685/ Rocky is the 1976 John G. Avildsen film about a scrappy, upstart boxer, and was written by and starred Sylvester Stallone. http://www.imdb.com/title/tt0075148/ The animal shelter on 110th street that Paul Griffin mentions is the Animal Care Center of New York City (NYCACC). Our guest from episode 38, Mark the Dog Guy, volunteers his pet grooming services there. http://nycacc.org Mark the Dog Guy's Facebook https://www.facebook.com/Mark-The-Dog-Guy-1717178331837120/ Coney Island is a well-known New York recreational area along the Atlantic Ocean in the borough of Brooklyn. One well-known event is the annual hot dog eating contest on the Fourth of July. Rhabdomyosarcoma is a childhood cancer of muscle tissue. http://www.cancer.gov/types/soft-tissue-sarcoma/patient/rhabdomyosarcoma-treatment-pdq All of Pawprint's music is composed by Luke Gartner-Brereton. Luke is a musician based in Australia, and he composes a wide variety of songs and musical loops http://vanillagroovestudios.com http://soundcloud.com/luke-gartnerbrereton If you want to learn more about Nancy and Harold, go to our About Us page at http://thisispawprint.com/about or listen to our introductory podcast episode, "Fifty Puppies and a Podcast." http://thisispawprint.com/000 Pawprint (or Paw Print) is a weekly podcast dedicated to animal rescue, adoption, and the heroes who make it happen. Volunteer, walk, adopt, or foster a dog, cat, rabbit, or other wonderful pet through your local shelter, humane society, SPCA, pound, and animal control. Help increase animal protection, welfare, and rights.  http://thisispawprint.com http://animalrescuepodcast.com

Understanding Childhood Cancer With Dr Geoff

All about rhabdomyosarcoma. What sort of tumour is it? Where does it occur? What tests are needed? How is it treated?

Journal of Clinical Oncology (JCO) Podcast
The First Prospective Trial of Proton Therapy for Children With Rhabdomyosarcoma: What We Learn From Preliminary Results

Journal of Clinical Oncology (JCO) Podcast

Play Episode Listen Later Nov 25, 2014 8:14


This is a prospective study of proton radiotherapy for rhabdomyosarcoma showing equivalent efficacy with photon treatment.

University of Alabama at Birmingham Radiation Oncology

Mon, 08 Sep 2008 12:02:09 GMT https://www.screencast.com/users/RadOnc/folders/University+of+Alabama+at+Birmingham+Radiation+Oncology/media/93991fa0-8ee7-4f72-b870-2021287f74bb https://www.screencast.com/users/RadOnc/folders/University+of+Alabama+