
UPDATE – Sep 25th, 2023 – Novartis radioligand therapy Lutathera® demonstrated statistically significant and clinically meaningful progression-free survival in first line advanced gastroenteropancreatic neuroendocrine tumors (GEP-NETs) Phase III NETTER-2 trial met primary endpoint of improvement in progression-free survival (PFS) and key secondary endpoint of objective response rate (ORR) in patients with Grade 2 and 3 […]

Whenever I get a chance to talk to a pharma involved in somatostatin analogue injection devices, I tell them one very important thing …… “To the patient, the injection delivery is almost as important as the drug”. I also add that my opinion is based on thousands of comments about the patient experience in my […]

Glen Etive Scotland in 2018 After diagnosis in July 2010, with the exception of a planned holiday to Turkey prior to my ‘big surgery’, holidays were put on the back burner, there were too many problems and too many risks – not least of which was the lack of overseas insurance cover for my condition. […]

Update August 2023. Latest CT surveillance scan reports “No evidence of progressive disease at any site”. Very pleased! With incurable but treatable cancers such as metastatic Neuroendocrine Cancer, ‘Stable‘ is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. […]

Exercise is medicine. Clearly I need to be careful with that statement given my aversion for cancer myths. However, those who know me will totally get where I’m coming from, they will know that there is no way I am saying it cures cancer. What I am saying is that the vast majority of doctors […]
Love you are doing this . . . So inspirational . . . I’m a wee lass in Oregon with a type of tumor called GIST not known to be neuroendocrine but I think I just proved it is and will be changing how doctors think about my cancer (SDHB mutation dad died of paragangliomas). Love the song 500 miles . . . In January 2020 my husband and daughter (age 35) sang that song in concert in Ashland, Oregon. Little did I know COVID was about to pounce and I’d end up in hospital for emergency surgery in March the night hospital COVID shutdown started thus my husband couldn’t be with me. I played the recording of that song for the nurses and it helped get me through that terrible surgery in which I almost died. Then I had to have another surgery in October 2021 during COVID at our National Cancer Institute when the same tumor tried to kill me again. I’m also a patient advocate but for a much smaller group of patients who have the SDHB inherited/germline mutation of Gist/Para/Pheo.
Nice to hear from you again and glad you’re OK after surgery. Great story about the song!
Fantastic accomplishment! You are such an inspiration!
thanks