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Negative Turn in a Long Journey
Pancreatic Cancer | Last Active: Nov 13, 2025 | Replies (106)Comment receiving replies
Hi @gamaryanne ,
Naliri is not treating me well. I've had two rounds, and spent almost 6 days after each round in bed and vomiting. I'm not sure if it's doing any good, either. Signatera and MRI Friday will tell the tale, but my CA19-9 keeps going up, now over 2800 (up 400 points in the past week).
The vomiting could be related to my stomach stent, but if the tumor is growing and blocking the stent then it's bad either way.
I got an email invite today for a clinical trial, followed immediately by another email saying "Woops, wrong patient, wrong disease."
No other good options yet, but as soon as I get the scan and Signatera results, I'll be making some decisions and reactivating my email blaster on the trial search. The Naliri might get one more chance (infusion). If it's not showing results, I'm stopping it.
I know the basic PARP inhibitors did not perform well on PDAC for patients with ATM mutations, but I read a promising case report about an ATM-mutated patient with stomach cancer who has done very well on the PARPi Olaparib. I may lobby for that "off label" as my bridge therapy until a KRAS G12D trial slot opens up close to home.
Glad to hear you're still enjoying life! 🙂
Replies to "Hi @gamaryanne , Naliri is not treating me well. I've had two rounds, and spent almost..."
@markymarkfl
I can’t imagine Naliri is causing the vomiting unless your pre-meds need adjustment? I’m fine with it until 5 days after pump comes off. Diarrhea, dry mouth, lips and nose burning. My doctor took me off platin drugs way back in 2022. I intend to ask about whether adding that back in could make a difference. I have an appt with a noted research doctor in this world on August 13. It’s a trek. The Seena Magowitz event is also that weekend and offers an incredible opportunity to round table with multiple doctors from all over . Perhaps I can do both and bring back suggestions for us all.
How does one test for Cldn ?
Should it be in a Caris or Guardant assay?
Pls get the vomiting addressed quickly so you can retain nutrients.
Are you at Mayo Jacksonville ?
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@markymarkfl A doctor sent me that 'flyer' about EBC-129. It is a trial. My husband does not qualify bec they require 'visible' tumours. I was also told about Olaparib for those with ATM mutations. My husband has ATM and KRAS-G12D.
@mnewland99 Have a look at the flyer?