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Negative Turn in a Long Journey

Pancreatic Cancer | Last Active: Oct 1 5:03pm | Replies (102)

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@joiedevivre : Thanks for pointing that out. The EBC-129 drug is known as Datroway. It recently received FDA approval for breast cancer and lung cancer. It targets cells expressing the TROP2 protein, which we know my tumor cells express. (It's what the specially trained Natural Killer cells were supposed to attack in my failed clinical trial last year.) I have asked 3 oncologists about prescribing it off-label for me, and they all yawned and looked at me like I was crazy. Did your doctor mention a specific trial name/number related to that flyer?

@gamaryanne : I'm pretty sure my vomiting is multifactorial, but today is the first day since my last infusion 11 days ago that I haven't felt like crap. I actually walked a mile and lifted weights today (and then puked when I was done). The vomiting has lasted a lot longer than the half-life of Naliri or any of the anti-nausea pre-meds, so other stuff is obviously contributing.

My MRI result yesterday was very discouraging. Although I've only had two infusions of Naliri since the last MRI, I have low expectations for success, based on the unimpressive performance of irinotecan in my pre-Whipple Folfirinox. I'm going to have a barium swallow test on Monday to check for patency of my gastric outlet stent and any other possible digestive blockages.

I went off my TPN 3 months ago when I found out it was a disqualifier for most clinical trials, and lost about 20 pounds in the process. I can still eat a lot of normal/soft foods orally, but not enough quantity (calorie count) to maintain my real target weight. Since I still have the central line (feeding tube), I recently resumed the TPN, although I'm calling it "SPN" (Supplemental Parenteral Nutrition instead of Total PN) to emphasize that I can live without it.

(The trial coordinators view TPN as a sign that you either can't swallow pills or are too feeble to participate in their trial. I guess healthier patients make for better trial outcomes.)

There's some decent info about Claudin 18.2 here: https://www.vyloyhcp.com/cldn182-and-testing
In short, it's detected by IHC (ImmunoHistoChemistry) staining, which I think most hospital/research labs can do. It doesn't require (or work with) Next-Generation Sequencing, so I don't think it has to be sent out to someone like Caris or Guardant. It does require tissue instead of just a blood sample. I tested negative for it, so those options are ruled out for me.

A few notes copied from the above link:

-- CLDN18.2 is an isoform normally present in gastric epithelium and is often retained in malignant gastric tissue

-- CLDN18.1 is an isoform primarily expressed in normal and malignant lung tissue; its expression is negligible in G/GEJ cancers

-- Both CLDN18 isoforms can be identified with the VENTANA CLDN18 (43-14A) RxDx Assay

-- When evaluating G/GEJ tumor tissue, the staining observed is reflective of CLDN18.2 expression

-- As with other protein biomarkers, CLDN18.2 is not assessable with NGS

Good luck in your treks to the research doctor and the Seena Magowitz event. Please share whatever you learn!

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Replies to "@joiedevivre : Thanks for pointing that out. The EBC-129 drug is known as Datroway. It recently..."

@markymarkfl We see the surgeon next week. I will ask for more details.