Symptoms

webinar series – episode 9

Pheo Para Research Update
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 here.

Q1 at 36:18: Does genetic mutation have any determinant on whether MIBG or Lutathera is effective for metastatic disease?

Q2 at 37:38: Is there any new research on treatment of PGL bone mets?

Q3 at 40:10: I didn’t have genetic testing when I was diagnosed. Should everyone have genetic testing?

Q4 at 42:17: What percentage of SDHB mutations are Variants of Unknown Significance (VUS)? What is VUS? Would it be reasonable to assume that a paraganglioma of the bladder removed at age 17 was caused by the gene mutation? The mutation was also confirmed to be inherited by the mother, although it never presented with her.

Q5 at 46:05: In a book entitled ‘the big 5’ by Dr Sanjiv Chopra, in the forward, he mentions there is emerging evidence that a Mediterranean diet is associated with longer telomeres…would Dr. Rory care to comment?

Q6 at 47:45: Is there any research investigating whether extremely highly secretory pheos will go on to recur/metastasize, especially where genetic syndromes cannot be identified?

Q7 at 50:45: Have you experienced patients with both endothelial dysfunction and Pheo?

Q8 at 52:05: Quite a few clinical trials on clinicaltrials.gov have a goal to treat pheochromocytoma and neuroblastoma. What is the commonality between the two?

Q9 at 55:15: Is there research on the long-term survival of MIBG treatment?

Q10 at 56:30: If there is no recurrence of a tumor, but symptoms and elevated catecholamines, is it possible for some kind of ‘post pheo syndrome’ because tumor cells are leftover after surgery?