Webinar Series Episode 6

Special thanks to Progenics for making this webinar series possible through an educational grant.

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.

Q1 at :19: I have metastatic pheo to the bones, am I more susceptible to getting COVID-19 and/or getting very sick?
Q2 at 4:32: Are there medications to carry for an adrenal event? How does COVID-19 affect those that are adrenal insufficient?
Q3 at 6:30: Do any contrasts used for imaging reduce immunity?
Q4 at 7:57: How has your clinic changed it’s practices because of COVID-19 and have you started to ease up on restrictions?
Q5 at 12:51: How do you see bone METS behave once a primary abdominal tumor has been removed?
Q6 at 15:19: Are different surgery approaches taken for those with SDHB mutation?
Q7 at16:45: I am three months post-op and I am still having symptoms such as high blood pressure, shaking, anxiety, etc. When can I expect symptoms to stop?
Q8 at 19:25: What does octreotide do?
Q9 at 21:30: My regular imaging was delayed because of the virus, can you please talk about when and if you are recommending people have imaging and scans?
Q10 at 23:14: What about if you are receiving MIBG or PRRT treatment, can/should this be delayed to avoid exposure?
Q11 at 24:25: I have a glomus vagale, I am worried when doctors tell me it’s inoperable. Can you tell me the risks of not having surgery?
Q12 at 26:35: I was diagnosed recently and I am not sure that my doctor has enough experience with pheo para. Any tips on how to find an experienced doctor?
Q13 at 28:05: I have a genetic mutation, but no tumor or symptoms. Am I at greater risk for getting COVID-19?
Q14 at 28:49: Does the removal of all of your lymph nodes cause problems with movement after surgery?
Q15 at 31:05: Could some of the Krebs cycle mutation offer us some protection against getting COVID-19?
Q16 at 33:07: My PRRT treatment was delayed. How long can we delay and make sure it still works?
Q17 at 34:23: I heard that blood pressure medications and COVID-19 treatment are a bad mix. Can you talk about this?
Q18 at 37:32: I have metastatic para, can I have 2-3 glasses of wine per week?
Q19 at 40:37: My tumor came back after 2013 gamma knife surgery and metastes were found. At that time, I was tested and no genetic mutation was found. It was decided to retest for genetics, and this time a panel was used for testing, but no mutation was found. Subsequent testing on tumor tissue resulted in a mosaic germline mutation on SDHB exon 4. What is a mosaic germline mutation and how many people have it?
Q20 at 45:40: What can you do about built-up scar tissue after surgery?
Q21 at 46:35: I don’t have a diagnosis of pheo para yet, but I am sure I have it. I have episodes a few times a week and have been going to the ER regularly over the past few months. How do I know when I should go the ER?
Q22 at 50:10 In an SDHB para case that has spread to bone and has shown up in a PET/Dotate scan through the trunk along the spine, how can you be certain that the metastases are in the bone versus in ganglia tissue?