Education Webinar Series - 6th Annual Fireside Chat with Dr. Karel Pacak

Featuring Dr. Karel Pacak, world-renowned pheochromocytoma and paraganglioma expert and Chair of the Medical Advisory Board, and Dr. Shonna Snyder, PPA Board Member & Patient. See questions asked and timing below. The information presented on this webinar is for educational purposes only and should not substitute the advice of your doctor(s) and medical team because they have in depth knowledge of your medical history and current situation. 5:19 - Q1: How are you doing? And how is Prague? 9:18 - Q2: What is Belzutifan? How does it work? Is it right for me? What are some potential side effects? What is the efficacy? 15:23 - Q3: Could there potentially be a patient who might take Belzutifan and Lutathera, for example? Would that be a scenario? 21:58 - Q4: If we are thinking about Belzutifan, what if you are not metastatic? Could you use Belzutifan still? 27:23 - Q5: What do you know about the research that is still going on at the NIH? In general, are you still aware of what is going on at the NIH? 31:15 - Q6: In general, do we know more now than what we used to about pediatric cases of pheo/para? Are we seeing any patterns there among the children who develop some of these tumors? 35:00 - Q7: If a child has tumors, is it possible that that child could be showing symptoms but it just isn't showing up on the scan yet? 41:14 - Q8: Have there been any recent updates on the FH mutation in connection to paragangliomas to help inform the best treatment? What percentage of cases turn cancerous? 45:07 - Q9: Is there something, in general, about paragangliomas/pheochromocytomas that causes anemia to come up? Or is it more specific to certain types, like head/neck? What should patients know about anemia? Is it something that patients should be monitoring thoroughly with their doctor? What do we know about that? 52:03 - Q10: Can you talk a bit more about the long-term effects of having these elevated catecholamines, especially on our heart, lungs, and some of our organs? 57:17 - Q11: If a person has head/neck paragangliomas, and they have not grown for several years, what's the likelihood that they will start growing? 1:03:45 - Q12: Is hyperbaric oxygen treatment safe? 1:05:39 - Q13: Every year we talk about the protocol for testing...You said earlier that the plasma test is a little bit better than the urine test. What's the protocol in regards to should the vial be chilled? Should there be preservatives if it is a urine test? Is there a place that we can send patients so that they get that exact information? Other than the Pheo Para Alliance's website, is there anything else that you would like to make sure that our patients know about proper testing?

Видео Education Webinar Series - 6th Annual Fireside Chat with Dr. Karel Pacak автора NEN_Cancer_hack