Message for the Registrants for Virtual Dialogue: Straight Talk About Chondrosarcoma
Straight Talk About Chondrosarcoma
A Virtual Dialogue (Via Zoom)
Tuesday, November 17, 2020
7:30pm – 8:30pm Easter Standard Time
For CS Warriors who have been newly diagnosed, for CS Warriors that have been diagnosed with a reoccurrence of Chondrosarcoma, for CS Warriors who are told their recurrence is inoperable, for those few lucky CS Warriors who have No Evidence of Recurring Disease (NERD); for the medical community, oncologists and sarcoma specialists; WE ARE ALL LOOKING FOR ANSWERS, and god willing a cure for this rare bone and tissue cancer. Our virtual dialogue: Straight Talk About Chondrosarcoma is our attempt to bring us all together to talk about solutions and provide hope to CS Warriors and their families who are looking for answers.
1. Preparation Update:
So far we have a total of 50 registered; 41 are Chondrosarcoma Warrior’s and their families and many of the registrants have submitted their questions in advance. We received 29 questions. Every question submitted will be reviewed, taken seriously and we will do our best to answer every one of them. Below is the second sample of some of the questions submitted:
- Is Surgery the only option to treat Chondrosarcoma when being first diagnosed?
- What are the next steps to take after finding out Chondrosarcoma has returned after surgery?
- Is immunotherapy (Keytruda) a viable option to treat Chondrosarcoma?
- When a patient has Chondrosaroma and presents with lung nodules that are malignant why grow and wait for a biopsy?
- How common is CPRS: Complex Regional Pain Syndrome in Chondrosarcoma patients after surgery?
- Are there any medications that show success in treating Chondrosarcoma?
- What is the success of using the Chemo pill: multikinase inhibitor pazopanib (Votrient)?
- Are there drugs available for other kinds of cancer that have been successful in attacking the IDH1 mutant gene and working on Chondrosarcoma successfully?
- Straight Talk Flyer
2. A Request:
We are reaching out to and sending an invitation but we still need Sarcoma Specialists and Oncologists to attend. Please 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: 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 15 minute presentation, 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
There is still plenty of time to register to participate in this very important dialogue. To register go to 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. For those who want to participate and remain anonymous, all we need is your e-mail address. (leave the name blank or write anonymous). Once we receive your registration, we will e-mail you updates and send the URL for the Zoom meeting and a password. The forum will also be recorded and posted for future use and a summary of the dialogue will be submitted to our commentaries section on our web site: csfshayna.org/.
We need you, we Sarcoma Experts and Oncologists 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.
Jeffrey T. Kramer, President