Patient and Family Education Programs
The NLMSF collaborates annually with major sarcoma centers of excellence to bring important and special educational opportunities to the LMS Community. Listed are program collaborations current and past, (some recorded).
Note: Due to the COVID-19 health crisis, all five in-person LMS education programs originally scheduled in 2020 were postponed. More updates will be provided as available. However, special education programs are taking place by phone or online meeting within the new NLMSF Patient Caregiver Initiatives: NLMSF Patient-Caregiver Advocacy Roundtable and NLMSF Survivors Inspire Peer Network.
EDUCATIONAL WORKSHOPS
of the
National Leiomyosarcoma Foundation
Patients - Caregivers Advocacy Roundtable
First MONDAY of each month – 7 pm EDT
Join the Patient-Caregiver Advocacy Roundtable Virtual Meeting
Guest Speakers featured for most meetings on topics selected by participants
Survivors Inspire Peer Network
Third THURSDAY of each month – 7 pm EDT
Join the Survivors Inspire Peer Network Virtual Meeting
Guest speaker featured at not meetings on important topics selected by participants.
Contact annieachee@aol.com or call 303 808-3437 to join the virtual meetings. The NLMSF Newsletters and FB Support Group will always announce scheduled meetings and guest speakers for each meeting.
Leiomyosarcoma Education Videos for Patients and Caregivers
TOPICS
- ABC’s of a New Diagnosis
- Basic Research
- Caregiving
- Chemotherapy and Targeted Agents
- Circulating Tumor DNA and Liquid Biopsies
- Clinical Trials
- Cutaneous Leiomyosarcoma
- General Information on Sarcoma Care – Multidisciplinary Approach
- Imaging/Radiology
- Immunotherapy
- The Microbiome (Gut Health) and its Impact on the Effectiveness of Chemotherapy Treatment
- Nutrition
- Pathology
- PECOMA
- How to Participate in Patient Centered Research - Count-Me-In / Pattern.org
- Radiation Therapy
- Sarculator
- Surgical Treatment
- Survivorship Care Planning
- Uterine Fibroids – What You Should Know Before Having Fibroid Surgery, Leiomyomas vs. Leiomyosarcoma
ABC's of a New Diagnosis
The ABC’s of a New Diagnosis 5/22/23 (Presented by the NLMSF)
Video recording: https://youtu.be/9pnKTkzqOw0
Introduction to the ABC’s of a New Diagnosis 1/16/22 (Presented by the NLMSF)
Video recording: https://youtu.be/BJBK8bJOOaw
Basic Research
The Importance of Telemeres in Leiomyosarcoma presented by Dr. Priya Chudasama of Heibelberg University, Germany (7/19/2022) Hosted by the NLMSF.
Video recording: https://www.youtube.com/watch?v=s5xJqpD0oMA
LMS Connect Live 3/18/22 (Hosted by the NLMSF)
Program Moderator 
Jonathan Trent, MD, PhD
Sylvester Comprehensive Cancer Center, Miami University, Miami, FL
Speakers:
Matthew Hemming, MD, PhD
Research Sarcoma Oncologist, Harvard Medical School/Dana-Farber Cancer Institute, Boston, MA
Discusses his work to develop and interrogate much needed laboratory models of leiomyosarcoma.
Nicolas Llosa, MD
Research Medical Oncologist
Johns Hopkins University, Baltimore, MD
Discusses his work to translate a better understanding of the immune microenvironment of LMS into improved immunotherapies for patients affected by this condition.
Video recording: https://youtu.be/lgXPwxdB
Caregiving
Lararex Foundation’s Dr. Marya Shegog discusses “Caregiving Counts” 8/20/22 (Hosted by the NLMSF)
Video recording: https://youtu.be/EhYR2LHtSdU
Chemotherapy and Targeted Agents
Neeta Somaiah, MD
Sarcoma Medical Oncologist, MD Anderson Cancer Center
Houston, TX
Current Treatment Options for Leiomyosarcoma (20 June 2024)
Hosted by the NLMSF.
Elise Nassif, MD, PhD.
Sarcoma Medical Oncologist, MD Anderson Cancer Center
Houston, TX
How patient co-morbidities can impact chemotherapy treatment (14 Apr 2023)
Hosted by the NLMSF.
Video recording: https://youtu.be/qcwqPNfPkpA
Jonathan Trent, MD, PhD.
Sarcoma Medical Oncologist
Sylvester Comprehensive Cancer Center, Miami, FL
The Use of Trabectedin in the Treatment of LMS (29 Jan 2023) Hosted by the NLMSF.
Video recording: https://youtu.be/efuZXkaRncQ
Neeta Somaiah, MD
Sarcoma Medical Oncologist
MD Anderson Cancer Center
Houston, TX
The Use of Votrient in the Treatment of Sarcomas (Leiomyosarcoma) (20 Jan 23)
Hosted by the NLMSF.
https://youtu.be/zk6CNU11VE0
Circulating Tumor DNA and Liquid Biopsies
Circulating Tumor DNA Status and Future Directions for Sarcoma Panel included Dr. Nam Quoc Bui, Dr. Brian Compton, Dr. Elizabeth Davis, Dr. Erlinda Maria Gordon, Dr. Matthew Hemming, Dr. Elise Nasif, Dr. Joanna Pryzbyl, Dr. David Schulman and Dr. Jonathan Trent.
Hosted by the NLMSF. Video recording: https://www.youtube.com/watch?v=fhsyH8bJn-l
Kristin Ganjoo, MD
Sarcoma Medical Oncologist
Stanford University Stanford, CA
Katie Baker, PhD. Medical Science Liaison – Oncology at Natera/Signatera
The Role of Circulating Tumor DNA (ctDNA) in Leiomyosarcoma (3/27/22)
Hosted by the NLMSF. Video Recording: https://youtu.be/4DdhdoP8BOQ
Joanna Przybyl, PhD.
The Research Institute of Montreal at McGill University
Montreal, Canada
Circulating DNA in Uterine Leiomyosarcoma and Benign Uterine Leiomyosarcomas Presented by Dr. Przybyl (2/24/2022)
Hosted by the NLMSF. Video Recording: https://youtu.be/Lhh_uvjK8uU
Kenneth Cardona, MD, FACS
Sarcoma Surgeon
Emory University Winship Cancer Institute Atlanta, GA
The Role of Nomograms in the Treatment of LMS and the Potential Future Impact of Circulating Tumor DNA on the Treatment of LMS Presented by Dr. Cardona (2/17/22)
Hosted by the NLMSF. Video Recording: https://youtu.be/Gy2u7QRLuqU
Dale Shepherd, MD
Sarcoma Medical Oncologist
Cleveland Clinic, Cleveland, OH
Current LMS/Sarcoma research projects at the Cleveland Clinic and perspectives on the statue of ctDNA for Sarcoma/LMS application for the future – were do we stand now? (2/2/22)
Hosted by the NLMSF.
Video recording: https://youtu.be/fqo32_wgRpU
Brian Crompton, MD
Dana-Farber Cancer Institute
Boston, MA
ct-DNA Proof of Concept Research for Sarcoma (30 Nov 2021) Hosted by the NLMSF.
Video recording: https://youtu.be/a98XOq_BE6k
Clinical Trials
Candace Haddox, M.D.
Sarcoma Medical Oncologist
Dana-Farber Cancer Institute and Harvard Medical School
Boston, MA
General discussion about clinical trials and presentation of the novel Phase 1 Clinical Trial using Peposertib (M3814) and low dose Liposomal Doxorubicin in Patients with Metastatic Leiomyosarcoma and other Soft Tissue Sarcomas for which she is the Principal Investigator. Presented 26 February 2025. (Hosted by the NLMSF)
Video recording: https://youtu.be/jVMw7irewYI
Seth Pollack, M.D.
Sarcoma Medical Oncologist
Lurie Cancer Center
Northwestern University
Chicago, IL
Discussion of the Phase II Clinical Trial for Leiomyosarcoma patients with metastatic or surgically unresectable tumors using Zanzalintinib (XL092) (a Tyrosine Kinase Inhibitor (TKI)) being conducted at Northwestern University and currently enrolling patients. (31 January 2025)
Hosted by the NLMSF.
Video recording: https://youtu.be/h4mi-aJT1tk
John Mullinax, MD
Sarcoma Surgical Oncologist
Moffit Cancer Center
Tampa, FL
Discussion of the STRASS 2/3 Clinical Trial for the Initial Treatment of Retroperitoneal Leiomyosarcoma and Liposarcoma (January 2025)
Hosted by the NLMSF.
Video recording: https://youtu.be/EPeR4Wui3Bs
Vishu Avutu, MD
Medical Oncologist Memorial Sloan Kettering Cancer Center
New York, NY
Phase 1a/2 Clinical Trial of GI-102 for Patients with Advanced Sarcoma (August 2024)
Hosted by the NLMSF.
GI-102 works by boosting the power of your immune system to find and kill cancer cells. It takes the brakes off the immune response by blocking a protein called CTLA-4. GI-102 increases the number of immune cells through the use of a second protein called IL-2. It is given intravenously (by vein).
Video recording: https://youtu.be/kfOK0sNa4JQ
Clinical Trials Perspectives a Panel Discussion by Sarcoma Medical Oncologists
(February 2024) Hosted by the NLMSF
Video recording: https://youtu.be/ioL0850rt7A
Dr. Gregory Cote, MD, PhD
Medical Oncologist at Massachusetts General Hospital, Boston MA
Dr. Cote provides a thorough overview of how clinical trials are done to bring new drugs such as Lurbinectedin to patients. He also discusses his current clinical trial using Lurbinectedin in combination with Doxorubicin in the treatment of advanced Leiomyosarcoma. (8 August 2023) Hosted by the NLMSF.
Video recording: https://youtu.be/AU46FmcSc3Y
Brian Van Tine, MD, PhD
Sarcoma Medical Oncologist
The Siteman Cancer Center, Washington University
St. Louis, MO
Dr. Van Tine discusses a new clinical trial: A Randomized Phase II Plus Ttial of Cabozantinib Combined with PD-1 and CTLA-4 Inhibition versus Cabozantinib in Metastatic Soft Tissue Sarcoma.
He also gives updates on three on-going clinical trials for leiomyosarcoma patients. (20 July 2023) Hosted by the NLMSF.
- Unesbulin (PTC596) in Combination with Dacarbazine – a Phase III Trial for Patients with Advanced LMS (SUNRISE Trial)
- Pegylated Arginine Deiminase in Combination with Gemcitabine and Doxcetaxel Phase III Trial for Treatment of Soft Tissue Sarcomas
- Randomized Phase 2/3 Trial Using Olaparib Plus Temozolomide Versus Investigators Choice Treatment for Treatment of Advanced Uterine Leiomyosarcoma
Video recording: https://www.youtube.com/watch?v=ZHpMtNTwSRw
Brian Van Tine, MD, PhD
Sarcoma Medical Oncologist
The Siteman Cancer Center, Washington University
St. Louis, MO
Updates on Three Promising Active LMS Clinical Trials (14 April 2023)
Hosted by the NLMSF.
Video recording: https://youtu.be/V80SxCwx_cE
Elise Nassif, MD, PhD.
Sarcoma Medical Oncologist, MD Anderson Cancer Center
Houston, TX
Clinical Trials in Soft Tissue Sarcoma: The Efficacy of Early – Phase Clinical Trials (21 Sep 2022) Hosted by the NLMSF.
Video recording: https://youtu.be/vArSCfUnAbM
Brian Van Tine, MD, PhD
Medical Oncologist at the the Siteman Cancer Center, Washington University, St. Louis, MO
Unesbulin, New Treatment for Leiomyosarcoma (Upcoming Clinical trial) Presented by Dr. Van Tine 6/28/22 (Hosted by the NLMSF)
Video recording: https://youtu.be/HbwUvXcl7wg
Matthew Ingham, MD
Sarcoma Medical Oncologist
Herbert Irving Comprehensive Cancer Center
Columbia University Medical Center
New York, NY
Discussion on New Treatment Approaches for LMS that are in Preclinical or Clinical Trials (8 Jun 2022) Hosted by the NLMSF.
Video recording: https://youtu.be/mY2q7q5VOlA
His recent presentation at the ASCO Meeting:
His ongoing clinical trials:
ATX-101 in Advanced Dedifferentiated Liposarcoma and Leiomyosarcoma
https://clinicaltrials.gov/ct2/show/NCT05116683?term=NCT05116683&draw=2&rank=1
A Phase II Clinical Trial Evaluating the Combination of Olaparib and Temozolomide for the Treatment of Advanced Uterine Leiomyosarcoma (Last updated August 24, 2022)
https://clinicaltrials.gov/ct2/show/NCT03880019
Additionally, Dr. Ingham’s colleague, Gary Schwartz, MD discussed this trial as it is going into Phase III on this Onclive Presentatiion https://www.onclive.com/view/olaparib-temozolomide-shows-encouraging-efficacy-manageable-safety-in-uterine-leiomyosarcoma?fbclid=IwAR05Ks-v50HFqLBY6zgv
Dr. Schwartz also discussed this trial on this presentation.
Hosted by the NLMSF.
Video recording: https://youtu.be/62gyn3nt6Z8
General Information on Sarcoma Care - Multidisciplinary Approach
VANDERBILT SARCOMA CENTER EDUCATION VIDEO – with Dr. Elizabeth Davis – Patient learning hour about sarcoma and its treatment – multiple disciplinary treatment at Vanderbilt University (14 July 2022)
Co-hosted by the NLMSF.
Video recording: https://youtu.be/2FuOuLewaJl
Elizabeth Davis, M.D., Vanderbilt Cancer Center, Nashville, KY
Brief background on LMS
Treatment of LMS
1. Systemic
2. Importance of supportive care during and after systemic therapy
3. Clincal Trials on the horizon (20 Aug 2020) Hosted by the NLMSF
Video recording: https://youtu.be/U-JW4GYi3tA
UCLA – NLMSF Patient/Family LMS Education Symposium February 2017
Program:
- Developing Drugs for Rare Disease – Arun Singh, MD
- Leiomyosarcoma: Personalized Sarcoma Therapy – Fritz C. Eilber, MD
- Surgical Management of Uterine Leiomyosarcoma – Joshua G. Cohen, MD
- Radiation Therapy for Leiomyosarcoma – Anusha Kalbasi, MD
- Leiomyosarcoma: Immunotherapy Clinical Trials – Bartosz Chmielowski, MD
- Nutrition & Integrative Oncology for Leiomyosarcoma Patients - Carolyn Katzin, MS, CNS
- Leiomyosarcoma Patient Discussion Session – Sandra Brackert, NP
Video recording: https://www.uclahealth.org/sarcoma/leiomyosarcoma-education-day
THE A B C’s OF A NEW DIAGNOSIS – THE https://youtu.be/2FuOuLewaJIMAYO CLINIC and the NLMSF present: The ABC’s of a Sarcoma Diagnosis
Video Recording: https://www.youtube.com/watch?v=nv2HP9TbaYA
How to Participate in Patient Centered Research - Count-Me-In / Pattern.org
Count Me In LMS Project and how to participate discussed by Ben Zola the director of the project
Video recording: https://youtu.be/EACPtT7cnK4
Imaging/Radiology
Imaging/radiology
Immunotherapy
Christian Meyer, MD, PhD
Sarcoma Medical Oncologist
The Johns Hopkins Cancer Institute Sarcoma Center
Baltiomore, MD
Discussion of the American Society of Clinical Oncologists (ASCO) Publication – Immunotherapy in Sarcoma Current Data/Promising Strategies (26 August 2024)
Hosted by the NLMSF.
Video recording: https://youtu.be/ogP5bVDSI3M
Elise Nassif, MD, PhD
Sarcoma Medical Oncologist
MD Anderson Cancer Center
Houston, TX
Targeting the Molecular and Immunological Features of LMS (9 Jun 2023)
Hosted by the NLMSF
Video recording: https://youtu.be/qaYjM2GPYzk
Article that the presentation is based on:
https://www.mdpi.com/2072-8894/15/7/2099
Jonathan Trent, MD, PhD. Sylvester Comprehensive Cancer Center, Sarcoma Center, Miami, FL
Current Status and Future Directions of Immunotherapies in Soft Tissue Sarcomas (28 Feb 2023)
Hosted by the NLMSF.
Video recording: https://youtu.be/W9QnMxDOeQM
Article on this Topic: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8945421/#B68-biomedicines-10-00573
Christian Meyer, MD
Sarcoma Medical Oncologist
The Johns Hopkins Sidney Kimmel Comprehensive Cancer Center Baltimore, MD
Immunotherapy for Sarcoma: A Work in Progress – Dr. Meyer discusses his recent article published in the Journal of Clinical Oncology (4/14/2022)
Hosted by the NLMSF.
Video Recording: https://youtu.be/w9o46xJ0cvA
You can read his article here: https://ascopubs.org/doi/10.1200/JCO.21.01338
The Microbiome (Gut Health) and it Impact on the Effectiveness of Chemotherapy Treatment
Elise Nassif, MD, PhD.
Sarcoma Medical Oncologist
MD Anderson Cancer Center
Houston, TX
The Microbiome (Gut Health) and it Impact on the Effectiveness of Chemotherapy Treatment (17 Feb 2023)
Hosted by the NLMSF
Video Recording: https://youtu.be/NtEdB4bno5E
Nutrition
Alison Tierney, MS, RD, CD, CSO
Licensed Cancer Dietician and Cancer Survivor
Guidance on Diet during Chemo / During Clinical Trials and more . . . (22 May 2024)
Hosted by the NLMSF
Ms. Tierney empowers those affected by cancer to conquer fears, take back control, and fully support their body before, during, and after cancer treatment.
Video recording: https://www.youtube.com/watch?v=6z21Z6ls33c
Pathology
Josephine Dermawan, MD
Research Pathologist
Cleveland Clinic
Cleveland, OH
Discuses her perspectives on pathology and her recent research publication. (May 2024)
Hosted by the NLMSF.
Video Recording: https://youtu.be/Ks30Ztm7QWQ
Alexander Lazar, M.D. Sarcoma Pathologist
MD Anderson Cancer Center
Houston, TX
Basic Lecture on Pathology of Sarcoma (3 Aug 2020)
Hosted by the NLMSF.
Video recording: https://www.youtube.com/watch?v=gjvcYEdOZmw
PEComa
Andrew Wagner, MD
Dana Farber Cancer Institute, Boston, MA
PEComa Research Updates and Q & A
Marco Schito, PhD
Director of C-Path’s CURE Drug Repurposing Collaboratory and an Adjunct Professor at the University of Arizona
Repurposing Drugs for prospective advancement of treatment for PEComa – the patient toolkit to participate in this patient-driven initiative. (March 2024)
Hosted by the NLMSF
Video recording: https://www.youtube.com/watch?v=yKp4zAo9TUU
Patient Centered Research How You Can Participate
Radiation Therapy
B. Ashleigh Guadagnolo, MD, MPH, FASTRO
Radiation Oncologist
MD Anderson Cancer Center
Houston, TX
Should Hypofractionated Radiation be Adopted as the Standard of Care for Extremity and Truncal Sarcomas (February 2025)
Hosted by the NLMSF
Video Recording: https://youtu.be/CV17JtEHWqM
Anush Kalbasi, MD
Radiation Oncologist
UCLA Department of Oncology and UCLA Comprehensive Cancer Center
Los Angeles, CA
The Role of Radiation Oncology in LMS (5/15/2021)
Hosted by the NLMSF.
Video recording: https://youtu.be/NuNNaaOV_9Q
Sarculator
Nam Bui, MD
Sarcoma Medical Oncologist
Stanford Cancer Institute
Stanford, CA
The Sarculator Nomogram – What is It and What is Its Role in the Treatment of Patients with Localized Sarcomas in the Extremities and the Retroperitoneal (August 2024). Hosted by the NLMSF.
Video recording: https://www.youtube.com/watch?v=V7Rn7ZBCTw8
Surgical Treatment
Eric Toloza, MD
Thoracic Surgeon
Moffitt Cancer Center
Tampa, FL
Current Thoracic Surgical Procedures for Sarcoma Lung Metastases
Presented by Dr. Toloza on 4/12/2024. Hosted by the NLMSF.
Video Recording: https://www.youtube.com/watch?v=OTpX1AryJAM
William Tseng, MD
City of Hope National Medical Center
Sarcoma Surgical Oncologist
Retroperitoneal Leiomyosarcoma — Consensus Guidelines and Daily Practice presented by Dr. Tseng (8/22/22) Hosted by the NLMSF
Video Recording: https://youtu.be/2FuOuLewaJI
Brian Kadera, MD
Surgeon, Complex General Surgical Oncology,
Ronald Reagan UCLA Medical Center and Santa Monioca Medical Center
Surgical Management of Leiomyosarcoma/Sarcoma (4/15/2021)
Hosted by the NLMSF.
Aime Crago, MD
Sarcoma Surgical Oncologist, Memorial Sloan Kettering Cancer Center, New York, NY
Surgical Management of LMS (2 Nov 2020) Hosted by the NLMSF.
Jeffery Farma, MD
Sarcoma Surgeon
Fox Chase Medical Center
Philadelphia, PA
Perspectives on Surgical Management of LMS/Sarcoma (4/2/2020)
Hosted by the NLMSF.
Video recording: https://youtu.be/uVyMcPVAQyA
Survivorship Care Planning
Survivorship Care Planning Presented by Shelley Fuld Nasso, MPP, CEO of the National Coalition for Cancer Survivorship (10/4/22) Hosted by the NLMSF.
Video recording: https://youtu.be/kwyZaw5-2yU
Uterine Fibroids - What You Should Know Before Having Fibroid Surgery
Leiomyomas vs. Leiomyosarcomas - A Clinical Dilemma
Uterine Fibroids – What You Should Know Before Having Surgery
A Panel Experts discuss this topic. Hosted by the NLMSF.
http://bit.ly/2K82sFO – Introductory brief about the medical panel presentation
Video recording: https://youtu.be/3d0FoUPv738
O. Sandra Madueke-Laveaux, M.D. Associate Professor of OB-GYN at the University of Chicago
Dr. Laveaux discusses the clinical dilemma of differentiation between a leiomyosarcoma and a benign leiomyoma and her work to try to find a biomarker in a person’s blood to help distinguish pre-operatively between these two entities. (27 October 2023)
Hosted by the NLMSF.
Video recording: https://youtu.be/Ht-xPnnNuQY