SPRING 2022 NEWSLETTER
Sarcoma Exchange 2022
Save the Date
We will be hosting the 5th Annual Sarcoma Exchange July 22 - 24th at the Hyatt Regency LAX in Los Angeles, California. If you're looking for an opportunity to connect with others in the sarcoma space and to learn from sarcoma specialists, please consider joining us! Virtual sessions will also be available for those who are not able to attend in person. Registration will open soon and in the meantime, please feel free to spread the word by sharing our Sarcoma Exchange web page and flyer with your networks.
Body Positivity
Courtney Hill, psychiatric mental health nurse practitioner and Sarcoma Alliance board member, helped us launch our Wellness Blog last year. This blog serves as a space to share wellness resources and to tend to our emotional, mental, and physical beings. In her latest post, Courtney discusses body positivity and cancer.
How do we accept the changes in our bodies and in our perceptions of self that occur during and after treatment? Courtney stresses that we all heal from cancer differently and in our own time. There is no right or wrong way to feel about what we've gone through and the scars that have been left behind. Accepting what has happened, however, is important for healing and there are different coping strategies to help. A few among them are giving yourself time to adjust, seeking support from others who have faced similar situations, being honest about your feelings with loved ones, and staying active however you can. To read on and learn more coping strategies, click below.
On Wednesday, April 13, 2022 at 6PM EST, 13Thirty Cancer Connect will be hosting Dana, the founder of the Butterfly Scar Project, in their speaker series for Adolescent and Young Adult (AYA) Cancer Awareness Month. All AYAs, healthcare providers, advocates, and community members are welcome to join this virtual event to learn more about Dana’s story and how she is empowering people to live confidently in their scars after cancer. Click here to access the Zoom link or to learn more.
Living With Scanxiety: Cancer Podcast
In January, the Sarcoma Alliance's Executive Director, Alyssa O'Driscoll, had the pleasure of interviewing with Rosaria Kozar for her podcast Living with Scanxiety. Rosaria's son, Broderick 'Brody,' was diagnosed with rhabdomyosarcoma at the age of two. Though Brody passed away a year later, the legacy of this smart and loving boy continues to live on through Rosaria's endeavors and mission to spread hope. The Living with Scanxiety podcast aims to support and inform caregivers of a child with cancer and is also a space where anyone interested in learning is welcome. To date, Rosaria has interviewed families, survivors, healthcare professionals, and nonprofit organizations such as Make A Wish and Camp Ronald McDonald. We are beyond grateful to be among Rosaria's interviewees and to have had the opportunity to share the resources the Sarcoma Alliance offers for pediatric sarcoma patients and their loved ones.
New Medical Advisory Board Member
We are pleased to announce that Dr. Seth M. Pollack, MD has joined the Sarcoma Alliance's Medical Advisory Board. Dr. Pollack is a medical oncologist and the Director of the Sarcoma Program at the Lurie Cancer Center and the Steven T. Rosen Professor of Cancer Biology at the Feinberg School of Medicine at Northwestern University. As a physician-scientist, he runs a translational research lab, developing new immunotherapies designed for patients with advanced sarcoma. He has developed and led multiple experimental immunotherapy trials for sarcoma patients. We are grateful to have Dr. Pollack on our team and for his dedication to the sarcoma community.
Sarcoma News Corner
Safety data for the Phase 1 clinical trial of the anthracycline drug Annamycin for soft tissue sarcoma lung mets showed little or no heart problems, even when the cumulative dose was greater than the lifetime maximum limit for anthracyclines! Anthracyclines, like doxorubicin, are very effective for sarcomas but because they can cause cardiotoxicity, dosage is limited. ClinicalTrials.gov Identifier: NCT04887298
After one child passed away from a brain tumor and another developed rhabdomyosarcoma, the Bowen family found that they had Li-Fraumeni syndrome, caused by a mutation of the TP53 cancer suppressor gene. This story raises awareness of the need for genetic testing and regular screenings if there are many family cancer cases, particularly among young people.
A combination of two antibodies worked to prevent metastases in mice with osteosarcoma and eliminate neuroblastoma, even though individually the antibodies did nothing. This was so encouraging that it will be tried in children with these cancers. Immunotherapy has not been that successful for solid tumors, but it seems combining agents could be an promising treatment method.
A young woman, Zulema Rubio, was diagnosed with an intimal sarcoma, a sarcoma of the lining of a major blood vessel in her heart. Dr. Andrew Pecora describes that surgery was essential, but the size and location made it impossible. Instead, doctors sequenced the tumor genes and used a combination of chemotherapy, immunotherapy, and radiotherapy to shrink the tumor enough to successfully remove it in a 14-hour operation. That was two years ago, and she is now a teacher. Amazing!
We are so proud of the three sarcoma survivors who participated in the 2022 Paralympics Winter Games! Brenna Huckaby won two medals, a gold and a silver in snowboarding, Thomas Walsh won a silver in Alpine Skiing, and Noah Elliott came in 6th in snowboarding.
A podcast with sarcoma expert Dr. Mark Agulnik of City of Hope discusses the most recent sarcoma molecular diagnostic methods, the characteristics of sub-types and patients, and determination of current and upcoming treatment methods. Very informative!
Researchers have found a new genetic fusion in extraskeletal myxoid chondrosarcoma. The fusion is a mis-combination of two genes, SMARCA2 and NR4A3, and would lead to more accurate diagnosis of this rare sarcoma, as well as the potential for targeted therapy.
A woman in her 20s, Kasey Altman, had to see four doctors before being diagnosed with alveolar rhabdomyosarcoma. Delayed diagnosis is unfortunately way too common for sarcomas, and can allow the cancer to grow and spread. Kasey, great job advocating for yourself and seeking second (and more) opinions! We wish you a rapid recovery. And remember, our assistance fund can help with expert second opinion costs.
For daily news items, visit the Sarcoma Alliance Facebook news feed.
Thank You!
We are so grateful to all of you for being a part of the Sarcoma Alliance community. Whether you are a new or long-time member, your dedication and generosity strengthens our mission to provide people with the information, guidance, and support they need to navigate their journeys. Thank you for being here!
We'd also like to take a moment to recognize our top donors, whose steadfast support has helped us start 2022 off strong. Thank you for all you do to support people facing sarcoma.
Gina D'Amato
David Kaczor
Dave Murphy
Philip Leider
Sharon Leider
Ordover Charitable Fund
