Pheo Para Alliance Webinar Series - Metastatic

Featuring Dr. Karel Pacak, NIH & moderated by Pat Collins, NBC4, Washington
Special thanks to Progenics for making this webinar series possible.
Link to slides: drive.google.com/file/d/1sonv...
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.
1. 32:08 Is this disease really as rare as it is thought to be?
2. 34:02 How can someone reach out to the NIH and possibly get treated?
3. 35:27 For MIBG, do women who are breastfeeding need to be in isolation and if so for how long?
4. 36:33 Have any new genes been found that produce an excess of red blood cell production?
5. 37:40 Are anxiety and panic attacks with sweating symptoms of pheo and para?
6. 39:38 Are there any over the counter medications one can take to help the drug therapies work better?
7. 42:08 What are the chances of para recurrence after surgical resection?
8. 44:29 Is it always stage 4 when it has spread to the bone? What is the life expectancy?
9. 45:40 Is surgery an option for a pheo that hasn’t metastasized?
10. 47:28 Does having a ruptured pheo increase the chances of the ruptured pieces spreading?
11. 49:23 Do alpha blockers possibly make panic attacks worse?
12. 50:18 Are blood-tests good enough for follow up with pheo para disease?
13. 51:31 How easy is it to get CT or MRI scans?
14. 52:30 Is there a place one could go to be treated with interventional radiology for a metastatic liver?
15. 54:27 How long does it take blood pressure to return to normal after pheo surgery?
16. 55:20 What is on the horizon for therapies for this disease?

[@md.rockybhasan8174]

Great

[@WTFwithU]

Contrary to what the NIH Dr Karel Pakar, Debbie Cohen, Daniel Pryma and surgeon and MD Kebebew's mentions at the Para Pheo online meeting,
I want to ask a single question,
How do I survive state 4 Paraganglioma Cancer without surgery for almost 30 years?
HOW
PGL patient, Nurse and Medical Tech.
(by-lateral neck, chest [left lung] and around 2015 the thyroid [left lobe]).

[@Vince_vanca]

hi guys, thanks for sharing this. The link to download the slides of DR Pacak seems to be down . Any chances to get the ppt of this presentation?

[@PheoPara]

Thanks. Just updated. Please try now.

[@PheoPara]

drive.google.com/file/d/1sonv8YhUO-ajZx3CyCwhlxfClZevIaBX/view?usp=sharing

[@Vince_vanca]

@@PheoPara thanks guys...all good now 😃