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Webinar Series – Episode 29

Special thanks to Lantheus Progenics for making this webinar series possible.

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.

Questions and timing are below.

Q 1 at 07:25 “Can you give us any updates on any new research, treatments, guidelines, etc. that patients might need to know about that have come out since we spoke last year?”

Q 2 at 15:00 “Are there any novel treatments in the last couple years?”

Q 3 at 18:57 “I read a study about pharmacologic concentrations of ascorbic acid being a promising area of treatment? Are there any clinical trials underway? Is there any current data showing life expectancy for patients with metastatic PCC?”

Q 4 at 22:06 “Are there any changes to the periodic screenings for asymptomatic SDHB genetic disorder procedures?”

Q 5 at 33:48 “What do we know about life expectancy for patients with metastatic disease?”

Q 6 at 36:21 “Can you share your thoughts about lanreotide treatment for inoperable paraganglioma?”

Q 7 at 39:45 “What are your thoughts on altitude and on whether it can be harmful for all paraganglioma patients, only those with SDH mutations, or only those with vagal paragangliomas?

Q 8 at 45:10 “If I have an SDHB mutation and one or more of my children inherit the gene, how strongly would you recommend moving to a lower elevation? Will it really make a big difference?”

Q 9 at 48:41 “Can you be metastatic and on ‘watch and wait’?”

Q 10 at 51: 30 “What are my metastatic pheo treatment options after PRRT?”

Q 11 at 1:00:02 “I’ve had 2 pheochromocytomas- so now have no adrenals. I was wondering why I continue to have elevated nor- metanephrine. I also have neurofibromatosis type 1 with numerous tumors, including many plexiforms in all levels of my spine. Could these numerous neurofibromas cause elevated catacholamines?”

Q 12 at 1:04:25 “Can you explain more about the use of beta blockers and ace inhibitors protocol pre surgery?”

Q 13 at 1:08:59 “What approach would you use for a paraganglioma close to aorta?”

Q 14 at 1:11:23 “What is the longest you’ve watched a patient with a vagal para that was stable and didn’t require surgical or radiation intervention?”

Q 15 at 1:18:58 “I have several surgical procedures in the future and I’m going in for a total knee replacement. I was diagnosed with two pheos one on my right adrenal and one on my left. The one on my right was removed by a right robotic adrenalectomy. The one on the left was left because they were unsure if they could do both. My question is two fold: 1) is there anything available to see if I have any more pheos – like in my bones as an example? 2) I have so many upcoming surgeries – repair a procedure that went wrong on my hand. Also they say I need neck surgery and lower back surgery with bolts and cages. I do not want – but if I had to go through that, could this left adrenal pheo be stable thru this?”

Q 16 at 1:26:40 “Could pheo/para be cyclic like Cushings can be and if so would this make a difference to testing”

Q 17 at 1:29:13 “What test to run for biochemically silent paraganglioma? My 24 hour urines are elevated about 1.5 to 2 times when having episodic episodes and just under 1 time elevated when not in an episode. So what other test would you recommend. My CT/MRI scans show liver lesions too small to characterize. I had a GA68 dotate that did not pick up any of my cysts and tumors I have on my liver and kidneys at all. The FDG/CT scan had uptake near the top part of the colon and uptake in the bone marrow and I now have 2 abnormal lymph nodes in the neck no can seem to figure me out?

Q 18 at 1:36:52 “Why after almost 1 year after removal of the tumor and one adrenal gland, do I still have weakness, dizziness and heart pain? All my exams are normal.”

Q 19 at 1:40:18 “If chemo hasn’t worked on a pelvis tumor and they’ve recommended finding a clinical trial or the pill cabozantinib, do you have any recommendation? I have done chemo for 6 months and they say it isn’t working.”

Q 20 at 1:44:29 “What is the treatment for a spinal tumor?”

Q 21 at 1:48:48 “Do we have any long-term studies yet done for the long-term effect of high catecholamines?”

Q 22 at 1:51:58 “Can you explain a bit more about the correlation between tumor size and relative risk of metastatic disease?”