Message for Attendees for Virtual Dialogue: Straight Talk About Chondrosarcoma
Straight Talk About Chondrosarcoma
A Virtual Dialogue (Via Zoom)
Tuesday, November 17, 2020
7:30pm – 8:30pm EST
1. Progress Report:
So far we have 38 Chondrosarcoma Warrior’s and their families registered and many of the registrant’s have submitted their questions in advance. We received 26 questions. Some questions were personal and had some sense of urgency so we sent them to the Specialist’s like John Gross to give you a reply before the event. I will assure you that every question submitted will be reviewed, taken seriously and we will do our best to answer every one of them. Below is a sample of some of the questions you submitted:
1. What is the origin of Chondrosarcoma; is there a genetic predisposition?
4 Why is it so difficult to diagnose, grade and classify Chondrosarcoma?
3. Why aren’t pathologists required to obtain second opinions on rare cancers such as Chondrosarcoma which is difficult to diagnose?
4. What is the likelihood that low grade Chondrosarcoma will reoccur?
5. Does Chondrosarcoma mutate to higher grades?
6. Are there any research or clinical trials focused on looking at a post-surgical prophylactic / medication to prevent Chondrosarcoma from returning?
7. What is the success of using the Chemo pill: multikinase inhibitor pazopanib (Votrient)?
8. Are there any other treatments / clinical trials found to be successful in prolonging one’s life?
2. A Request:
So far we have 5 registered with medical affiliations: Pathology, Radiology, Immunology, Family Medicine and Clinical Research. Our goal is to expand our invitation list to Sarcoma Specialists and CS Clinical Researchers. My request to you is to help us reach out to your Oncologists, Sarcoma Specialists and Clinical Trial Researcher and invite them to Join us on November 17. Please feel free to send me contact information (name, organization and e-mail) and I will be happy to send a personal invitation with all the relevant details.
3. Virtual Dialogue Format
John Gross, M.D. a board member of the CS Foundation and Faculty Assistant Professor, Bone and Soft Tissue Surgical Pathology at Johns Hopkins University in Baltimore, MD, will provide a presentation entitled: Chondrosarcoma: Challenges in Diagnosis, Grading and the Importance of Proper Classification. He submitted an article on this topic in July, 2020 and it is posted in the Commentaries section of the web site: www.csfshayna.org/commentaries/ John emphasizes the need to have surgical pathologists accurately diagnose, grade and classify Chondrosarcoma and explains how challenging and difficult that process is but necessary to help oncologists and patients determine the best course of care for their medical condition. Following John’s presentation 15 minute, we will have a Q&A for CS patients and Sarcoma Specialists and Sarcoma Researchers. This will be the opportunity to questions about Chondrosarcoma and have a virtual dialogue with the experts that attend. We want to encourage questions and include experts that can provide answers. This is the reason why we are personally reaching out to Oncologists, Radiologists, Sarcoma Experts, Research Experts and others to bring them all together on the Zoom platform on Tuesday, November 17.
4. Chondrosarcoma Foundation’s Mission
The Chondrosarcoma Foundation advocacy efforts focus on improving the treatment and care for CS patients. We also advocate and promote positive changes including a viable treatment protocol, early detection, proper surveillance, more efficient and relevant information dedicated to Chondrosarcoma. Most importantly the foundation advocates for more compassionate care, cutting through red-tape and promoting the patient’s right to receive treatment especially if it is potentially life-saving.
Like we were with our daughter Shayna; Chondrosarcoma patients and their families are looking for answers and the CS Foundation wants to help get them the answers they need to make critical decisions about their care. Hosting the Straight Talk Virtual Dialogue meets the mission of the Foundation and brings us one step closer to finding answers to improve the care for Chondrosarcoma.
Straight Talk About Chondrosarcoma will be the first International Forum for Sarcoma Specialists, CS Patients and their Families to focus on Chondrosarcoma. It is an opportunity for CS patients to ask questions and seek answers and give Sarcoma Specialists the opportunity to hear from CS patients.
5. Encourage Experts and Patients to Register On-line
To register for the event you can reply to this e-mail or go to www.csfshayna.org/straight-talk-registration/scroll down and “click here to register.” All we need is your name and e-mail and the option of giving us a message, information or any questions to consider for the event. Once we receive your registration, we will e-mail you the URL for the Zoom meeting and a password. The forum will also be recorded and posted for future use.
We need you and other Sarcoma Experts to join us. There are no fees. We are hopeful that this first international dialogue on Chondrosarcoma will be a successful and useful event and will be the first of many more to come.