
I started my “sometimes you gotta climb that hill” series/campaign some years so. I used it as a metaphor based on my own experience of actually climbing up hills. There is no way I could have done some of the physical stuff I can do now in the first couple of years after diagnosis – […]

What are Duodenal Neuroendocrine Neoplasms (dNEN)? The duodenum is technically part of the small intestine, and you can find that in most anatomy-based descriptions. One of the research references I used was titled “Somewhere between the pancreas and the small intestine” and in the case of Duodenal NENs (dNENs), I can understand why they adopted […]

Let me start by saying that Neuroendocrine Cancer awareness is in a better place than it was when I was diagnosed in 2010. But it should be further forward, much further forward. In some areas, we appear to be going backwards. It’s not where it should be because some people, some organisations (including some so-called […]

Summary May produced the best statistics in 2023, mainly due to your support for my blog post on Maria Menounos whose announcement headlined as “Pancreatic Cancer” caused a storm within the Neuroendocrine Cancer community. Below, I’ll list the top performing blog posts in May and no secret which one is listed first. Repeat after me: […]

Those who follow my Facebook page Ronny Allan may remember my cycling faux pas in April causing me to bruise or fracture a rib (here if you missed it). I was told it may take up to 6 weeks to heal, it took 5. During that painful period, I looked ahead and wondered how I […]
Ronny-
Immunotherapy on the site?
I was diagnosed with stage 4 pancreatic NET mets to liver in Jan 2019. After a few weeks with a 3-6 mo survival diagnosis some additional tumor analysis found they were Hi-MSI tumors -eligible to be treated with recently approved (for all Hi MSI solid tumors) immunotherapy.
I had great results being treated with ipilumumab + nivolumab for 24 mos. Tumors shrunk to about 10% of the original mass and then were stable for a couple more months. Once the tumors started growing (slowly) again, I came off the original treatment and have been on investigational immunotherapy since. First trail was successful for 3-6 mos. Now I’m onto the 2nd trial and feeling better again.
With an FDA approved immunotherapy for Hi-MSI NETs, suggest it would be useful to have info about immunotherapy on your site. I was treated at MD Anderson in Houston.
The team at MD Anderson almost immediately did tumor analysis that flagged the biomarkers which showed immunotherapy would likely be effective. Suspect not all patients have that good fortune.
Let me know if I can help.
-P
What is your grade and differentation?
The immunotherapy experience with Neuroendocrine Neoplasms is not great, there’s always outliers of course.