The President’s Corner

It is almost impossible to believe, but we have entered the Sarcoma Alliance's 25th year of existence!  As part of our celebratory activities, I have started to reach out to former Board members and supporters along with my sister Stephanie, our Board Secretary. We recently had dinner with Board member extraordinaire Denise Lapins and star Executive Director Arthur Beckert, and another dinner with our graphic design guru and long-time Board member Kevin Plottner. What a pleasure it is to reconnect with such wonderful people. And there are many more to come, so stay tuned.

In this issue of our newsletter, you will read about:

• Our fantastic new Board members (Richard Zuromski, Alison Muse, Jeff Coyne and Julie Johnson) and legendary new Board Emeritae (Joan Darling and Suzanne Schwartz);
• The inspiring Sully's Run memorializing Pearl Mae Foundation founding Executive Director Lauren Sullivan and spearheaded by their amazing present ED, David Krell;
• The incredible Dr. Kim Nix, who is a medical resident, Undifferentiated Pleomorphic Sarcoma survivor, and TikTok superstar;
• Planning for our 7th annual Sarcoma Exchange, which we will be co-hosting this year with the wonderful Wendy's Walk and MD Anderson Cancer Center;
• Recent and promising advances in sarcoma treatment, including immunotherapies; and
• A call for volunteers to help us out with our Communications and Outreach.

It is an exciting time to be part of all the good that the Sarcoma Alliance does for the sarcoma community.  Thank you so much for joining us!

Sarcoma Alliance Highlights

Our Team is Growing

This year has brought many new additions to the Sarcoma Alliance Board of Directors. Despite their varied backgrounds, our Board members share a commitment to and passion for helping those affected by sarcoma.  Our new Board members bring invaluable experience in healthcare, advocacy, non-profit leadership and community engagement. Please visit our website to learn more about our newest board members: 

(Top Left to Right) Richard Zuromski, Jr., JD, Alison Muse, MPH                                        (Bottom: Left to Right) Jeffrey Coyne, JD, Julie Johnson, MBA

Power Sisters

We are proud to welcome sisters Joan Darling and Suzanne Schwartz as Board Emeritae, our organization's highest honor. In her 20+ years on the Sarcoma Alliance's Board of Directors, Joan has served as President, Vice President, and Treasurer of the Board of Directors, chaired our Client Services Committee, shared the latest in clinical research on sarcoma on our Facebook and Instagram feeds (she holds a PhD in Biology), and advocated fiercely for pediatric sarcoma patients. Suzanne, also a long-time Board member and for many years our Board Secretary, has been the driving force behind our wonderful Sarcoma Exchange since its inception. Congratulations and thank you from the bottom of our hearts, Joan and Suzanne!

Sully's Run

On October 21, 2023, Sarcoma Alliance Board Member and Ambassador Brandi Benson, together with volunteer champion Jackson Rhine, proudly represented the Sarcoma Alliance at Sully’s Run in Jupiter, Florida. This annual event is dedicated to the memory of Lauren Sullivan, founding Executive Director of the Pearl Mae Foundation, who died of Follicular Dendritic Cell Sarcoma in 2021. Money raised from Sully’s Run supports both the Pearl Mae Foundation and the Sarcoma Alliance.  Below are pictures from the event and Pearl Mae Executive Director, David Krell, presenting a $10,000 check to the Sarcoma Alliance to help further our efforts to guide, educate, and support sarcoma patients and caregivers. Stay tuned for more information about the 3rd annual Sully’s Run in October 2024. 

Patient Spotlight: Dr Kim Nix 

At the Sarcoma Alliance, helping create better experiences for sarcoma patients is at the heart of all we do. Their stories, struggles, and triumphs serve as the driving force behind our mission to support, educate, and advocate for those affected by sarcoma. Patients are not just recipients of our services; they are our inspiration and our greatest teachers.  In today's newsletter, we have the privilege of hearing from Dr. Kim Nix.

As you will read, Kim has a very robust Tik Tok channel designed to help raise awareness for sarcoma. In a short time, Kim has built a following of more than 70,000 people on Tik Tok and Instagram (@cancerpatientmd) as she shares her lived experience as a sarcoma patient. Join us as we learn from Kim's experiences and draw inspiration from her story. 

Tell our readers a bit about yourself…

My name is Dr. Kimberley Nix (she/her/hers), but you can call me Kim! I’m a resident doctor who has finished internal medicine training and is continuing residency education as both a General Internal Medicine Fellow and Clinician Investigator Program Resident at the University of Calgary, Cumming School of Medicine in Calgary, AB, Canada. I am pursuing a joint MSc in Epidemiology through the CIP program. In my spare time (I’m currently on medical leave), I am a metastatic/advanced Undifferentiated Pleomorphic Sarcoma patient and am working on spreading awareness and advocacy regarding this diagnosis.

As you feel comfortable, what can you share about your sarcoma diagnosis?

I was originally diagnosed with early stage but high-grade disease in February 2021. My mass was pea sized when I felt it, and by the time I got an ultrasound a week later, it was already bigger than a marble! An MRI a few weeks later showed it had grown to the size of a grapefruit. I got a biopsy quickly after my MRI. Originally, the local pathologist thought I had extra-skeletal osteosarcoma. My pathology was simultaneously sent to several high-volume sarcoma centres. I was subsequently diagnosed with Undifferentiated Pleomorphic Sarcoma as my final diagnosis. It’s not uncommon for diagnoses to change on review from high volume sarcoma centres!

Unfortunately, despite a resection of my primary mass, in my left hamstring, and adjuvant chemo (chemo after surgery), I only remained without evidence of disease (NED) for a few months after my surgery. I had lung metastases, which we “cut out” with two wedge resections in February 2022 and in June 2023. After my second resection, we opted for more chemo as my margins (the space around my mass of healthy tissue) were very, very tight, increasing my risk of recurrence. By October 2023, shortly after my wedding, I was found to have many more metastases in my lung and chest wall and breast tissue, which was deemed to be incurable/terminal disease. We tried two other guideline-based chemotherapy protocols (one a targeted chemotherapy), but my disease did not respond. Now I am on an experimental therapy, called Pembrolizumab, and have palliative care involved for symptom management while we wait to see if I have a response to this drug.

I am often asked if we should have cut out the disease right away or amputated my leg, but I believe in my heart we did the most evidence-based protocol available with the information we had at the time and have been happy with the care I have received here in Calgary. Unfortunately, almost half of sarcoma patients will die of their disease, regardless of treatment, which is why more research and awareness is needed!

What inspired you to start your TikTok channel? 

I was originally inspired by the Sarcoma Alliance to share a daily fact about sarcoma during Sarcoma Awareness Month, to raise awareness about sarcoma. I was surprised to find the number of people who could relate to the sarcoma story on TikTok. I found the young adult population important to reach, as sarcoma disproportionately affects youth and young adults relative to other cancers, despite being rare. 

In what ways do you think TikTok has the potential to impact healthcare communication and patient education? What advice do you have for patients who are using Tik Tok as a source of information? 

TikTok is reaching a young, motivated patient population and I believe that there is a role for healthcare providers to engage in informative, non-sponsored content aimed at patient education. It also serves as an opportunity for patients and their families to engage in a form of peer-support.

I believe the biggest risk is misinformation - both patients and providers should be careful to share what is their own lived experience, versus medical evidence/medical recommendations.

In sarcoma, each case is unique, and I do not think there is a role for specific medical advice on the platform, but rather general patient education, such as symptoms to watch for, as there is no screening test for sarcoma! Healthy skepticism should always be brought when a medical provider may have direct or indirect financial benefit from providing a recommendation online!

What advice do you have to share with others who have been recently diagnosed or who are undergoing treatment for a sarcoma diagnosis? 

My solitary advice is to ensure your pathology and treatment is guided by at least one high-volume sarcoma centre. Second opinions from high-volume centres can save lives in sarcoma! 

What advice would you offer to other healthcare professionals who may be treating sarcoma patients, based on your unique perspective as both a physician and a patient?

It’s simple advice - listen to your patient! TikTok has taught me how many young, healthy individuals did not feel listened to by their healthcare provider, especially people who identify as women, or are black, indigenous or other people of color. Don’t be afraid to image a mass, especially if it came suddenly, is growing or changing!

Upcoming Events

Save the Date!

The Sarcoma Exchange: October 5-6, 2024

This year, the Sarcoma Alliance is teaming up with Wendy Walk to host the 7th Annual Sarcoma Exchange on Saturday October 5 - Sunday October 6, 2024. The 2024 Sarcoma Exchange will be a virtual educational conference, developed in partnership with MD Anderson, featuring sessions from leading physicians on topics ranging from mental health and exercise to immunotherapy and clinical trials. There is no cost to attend the conference. Save the date! We would love to see you there! A registration link will be sent in the coming months. 

Sarcoma News Corner

A Promising New Treatment on the Horizon for Synovial Sarcoma: In February, the FDA accepted Adaptimmune’s Biologics License Application for Afami-cel, a groundbreaking TCR T-cell therapy.  Learn how this innovative therapy may reshape cancer treatment!   www.adaptimmune.com

On April 18, President Philip Leider and Board member Alison Muse will attend an Adaptimmune investor relations event in Philadelphia. They will meet the Adaptimmune team, tour the facility, learn more about the exciting work Adaptimmune is doing, and share their perspectives as sarcoma advocates. Our founder, Suzanne Leider, was born on April 27 and died of synovial sarcoma, so this promises to be a moving and inspiring event for the Sarcoma Alliance.

Immunotherapy Advancements: Have you heard of immunotherapy but never really understood how it works or how it might benefit people with sarcoma? Discover the latest study from MD Anderson Cancer Center revealing the promising survival outcomes for immunotherapy combined with radiation before surgery for undifferentiated pleomorphic sarcoma (UPS) and dedifferentiated liposarcoma  (DDLPS):  medicalxpress.com

Did you know? Computed Tomography scans (CTs) of the chest are important for staging arm and leg sarcomas because they tend to metastasize to the lungs. But guidelines indicate that the scans don’t need to have contrast, which is often added.  Sarcoma expert Dr. R. Lor Randall discusses ways to have more institutions follow the guidelines: www.onclive.com

Interested in more sarcoma-related news? Stay up to date with our daily Facebook posts on the latest happenings in the sarcoma landscape, including cutting edge research. Check us out on Facebook!

Get Involved! 

The Sarcoma Alliance relies on a dedicated group of volunteers to ensure we provide relevant guidance, support, and education for everyone affected by sarcoma. Currently, we have a few immediate volunteer needs:

Social Media Volunteer to dedicate 1-5 hours per week on various platforms including Instagram, YouTube, and Tik Tok.

Communications & Outreach Volunteers: to help support our numerous communications and outreach initiatives including the Sarcoma Exchange, quarterly newsletters, social media presence and more! 

If you are unable to volunteer your time, please consider making a financial donation to the Sarcoma Alliance.