Pheo Para Alliance Webinar Series - Genetics
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.
Download slides - https://drive.google.com/file/....d/1UpPE0XhWzr0AcKySX
Q1 at 30:55: What is the best age to test to see if my daughter has the genetic mutation her father has?
Q2 at 32:05: My daughter had a Pheo removed and has SDHB but no one else in the family has it. How is this possible?
Q3 at 33:12: Who pays for genetic testing?
Q4 at 33:52: Can you talk a little bit about SDHAF2?
Q5 at 34:34: How does diabetes affect Pheo/Para?
Q6 at 35:20: Should I avoid coffee?
Q7 at 35:54: How do I find a doctor that has experience in Pheo/Paras?
Q8 at 36:29: Are there any updates on research regarding turning gene mutations off?
Q9 at 37:01: What is the chance of recurrence for a sporadic Pheo or Para?
Q10 at 37:52: Can a Pheo or Para be missed by a 24-hour urine collection test?
Q11 at 38:40: Can medical marijuana alleviate Pheo or Para symptoms or cure them?
Q12 at 39:14: After an adrenal gland is removed, is it still possible to have “fight or flight” symptoms?
Q13 at 39:46: Can you have a Pheo on one adrenal gland and then have it removed and then develop one on the other adrenal gland?
Q14 at 40:31: Is it unusual for someone to have a GIST or a Para in a kidney or a liver but no other abdominal locations?
Q15 at 41:16: I have an SDHB GIST. I had a PET uptake on the Gallium 68. Could my tumors be partially neuroendocrine tumors?
Q16 at 42:27: Can you talk about some of the radiation therapies available?
Q17 at 44:02: What is the survival rate for someone who has Pheos with metastasis to the liver?
Q18 at 46:14: Can you talk about the frequency of scans? When is it too many?
Q19 at 47:38: I have had two Pheos, NF1. Can spinal tumors be Paras?
Q20 at 48:11: Is a blood plasma test better or worse than a 24-hour urine collection?
Q21 at 49:33: Is it okay to eat pickled foods?
Q22 at 50:07: What kind of imaging is best to diagnose Pheo Para?
Q23 at 51:33: How many tumors uptake on an MIBG scan?
Q24 at 51:57: If it does show uptake, does that mean that the treatment will work?
Q25 at 52:42: What is some promising research about Pheos and Paras?
Q26 at 53:57: Is it okay to live at high altitudes if you are affected by Pheo or Paras?
Q27 at 55:09: When should I look into participating in clinical trials?
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