Special Informational Webinar - After AZEDRA: Moving Forward Together

In this special webinar, Pheo Para Alliance is joined by experts in the treatment of metastatic #pheochromocytoma and #paraganglioma to discuss the discontinuation of #AZEDRA recently by announcedt by #Lantheus. AZEDRA is currently the only FDA-approved treatment for metastatic, non-resectable pheo para. Guests include Camilo Jimenez, M.D., MD Anderson Erik Mittra, M.D., PhD, Oregon Health & Sciences University Daniel Pryma, M.D., Penn Medicine Questions and timing are as follows: Q 1 at 06:44 What happens now that Azedra is no longer available? Q 2 at 11:07 Is Azedra no longer available to new patients? Will patients who started Azedra treatment be able to complete their treatment? Q 3 at 11:49 Why are they stopping production of Azedra? Q 4 at 16:43 Is there anything we can do - grassroots campaign, for example - to stop or delay the cessation? Q 5 at 23:22 Is something better than Azedra coming soon? I have a vagal paraganglioma that is avid to Gallium DOTATATE. Targeted chemotherapy would suit me but what options will I have when Azedra has gone? Q 6 at 25:40 Is Lutathera as effective for people who responded well to AZEDRA? Q 7 at 25:53 How might side effects from treatments like Lutathera (PRRT) differ from those associated with AZEDRA? Q 8 at 31:38 Can I be treated with Lutathera (PRRT) if I was treated with AZEDRA? If yes, are there any caveats? Q 9 at 34:12 What clinical trials are currently available? Is the Belzutifan trial still open? Q 10 at 41:54 Are there any SDHB specific treatments that have shown to be effective in the treatment of paragangliomas? Q 11 at 43:22 I have received 500 millicurie of Azedra with partially positive results. My doctors recommended another dose of 300 millicurie but I don’t feel very safe. Q 12 at 45:07 My insurance covered AZEDRA. Will it cover a different therapy? What can I do if it doesn’t? Q 13 at 48:37 Can any of the doctors take a moment to discuss the out-of-pocket cost of AZEDRA and Lutathera? Q 14 at 50:57 Are variations of unknown significance (VUS) included in the Beltutifan trial? Q 15 at 51:32 Are there any clinical trials directed at methylation? Q 16 at 53:53 What is the role of lower doses of MIBG?