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Negative Turn in a Long Journey
I was diagnosed with PC in March 2023 just after my 60th birthday, and have frequently checked this forum, read most of the posts and responses here, and have taken great comfort and learned a lot from everyone's input. I am at an important crossroads in my treatment, however, and would appreciate any thoughts, advice and input you all may have. I am being treated at Smilow Cancer Hospital at Yale.
I had a small (1.9 cm) tumor in the head of my pancreas that restricted my bile duct and was also wrapped around the portal vein. I had 8 rounds of Folfirinox, the tumor shrunk away from the vein, and I was on the table for Whipple surgery on 9/25/23.
At the start of surgery, 5 small malignant lesions were found on my liver (even though nothing was ever seen on scans) and surgery was aborted. I started FFOX again and sought second opinions at UCLA, Mayo Clinic, and Frodetert/MCW which provided a lot of motivation for me to push on towards making surgery possible again. After 14 more rounds of FFOX (22 total) I was back on the table one day short of a year later on 9/24/24 for Whipple. This time it was a success. Eight hours of Whipple followed by 4 hours of portal vein reconstruction. I recovered very quickly (only 4 days in the hospital) and within 2 months was back to “normal” with only a few minor digestive issues to deal with.
My post-surgery pathology was as follows: Tumor: 1.5 cm, Grade G2, invades retroperitoneal soft tissue and portal vein. Perineural invasion present. Involves vascular bed/groove (corresponding to superior mesenteric vein/portal vein). All margins uninvolved by invasive carcinoma and high-grade intraepithelial neoplasia. 24 lymph nodes examined; 1 involved. Staging: ypT1c N1, at least Stage IIB. Tumor testing showed I have the KRAS G12D mutation.
My “secret weapon” throughout all this has been my physical health. I was a competitive cyclist and runner for over 40 years and I had very mild side effects during the 22 rounds of chemo; always ECOG=0. Throughout the last 2+ years I have continued to ride my bike, walk, jog, swim and do the occasional weight workout or yoga, on average about 10-15 hrs./week.
As you can probably guess, things have taken a negative turn recently. My first two sets of post-surgery check-up scans were NED but a May CT scan showed (and a PET scan confirmed) suspicious areas–soft tissue attenuation around the celiac/hepatic arteries, thickening of the left adrenal gland, an enlarged lymph node adjacent to the superior mesenteric vein, and a small lump in the wall of my abdomen. The lump appeared 2-3 months after surgery and is right at the incision where one of my abdominal drains exited. I had it checked out back in January and it was deemed scar tissue. I am having it biopsied tomorrow so at least I’ll know if that's the case.
So finally to ask my question(s). Where do I go from here? My options at Yale are a drug trial or back to chemo: either FFOX or Gem-Nab. I know what living for Folfirinox is like but also know the side effects of Gem-Nab might be even more tolerable. My oncologist said normally she would recommend Gem-Nab but since I haven’t had treatment for over a year (last round of FFOX was May 2024) that it’s “up to me”.
There is a KRAS G12D drug trial at Yale (ASP 3082) that I hoped to get into but there’s no space right now. I am still waiting to hear if Yale has other KRAS trials available. I have a list of other trial options at MSK and Dana-Farber since both locations are relatively close by. I would be willing to travel even farther afield for a trial if I could manage it.
Thanks for taking the time to read my story and for any thoughts, personal experiences or other things you have to share.
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@markymarkfl
Checking in to see how you are doing on Naliri? Side effects have been irritating for me but tolerable. I can still get up and out every day!
My scan came in last night and showed some good news-no new metastases, but also showed my liver tumor has grown by at least 2 cm. Today I go in for MRI staging for SBRT and will find out if it is still targetable. My CA19-9 is now up to 500s, so seems like resistance to this drug. I know I must stay on something systemic , even if this tumor is annihilated. But what?
Have you been given any options beyond Naliri by your good physicians? I intend to continue this fight unless I can no longer enjoy my life or become too much of a drag on my family. So far, I think I have been able to manage that aspect.
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9 Reactions@gamaryanne there are new chemos in trials being offered now. I was offered one at UCLA with the criteria that one tested positive for the cld18.2 antibody, but I have elected not to go that route as the infusion time is 8 hrs and vomiting even during infusion seems to be a pretty certain side effect. I was also told by my UCLA oncologist to avoid removal of appendix even though my largest nodule is adjacent to it as it's risky and another one will just pop up; I was convinced of this. I stopped using the gem-abraxane combo following SBRT since I didn't fancy the oncoming neuropathy and my antigen was normal. I've asked to go back on it since it kept my meager 2 nodules at bay for over 1 year; now I must have a lot based on my antigen of over 13,000. I will use the ice booties and mittens this go around to try and avoid the neuropathy. You've provided such invaluable insight to all of us with your posts that please never see yourself as a burden. We are all fighting this together and I pray the phase 3 clinical trials for 6236 are successful and possibly end early if they prove they would be promising for our community versus waiting until 2026 for the results. I hope someone in the phase 3 6236 can post their progress, if allowed.
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7 ReactionsHi @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! 🙂
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7 Reactions@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?
@mnewland99 thank you for your kind words. You are right! Stage IV is just a label and many have made it past 5 years so we will too!!
As for 6236 trials, I joined an online group of 6236/9805 trial participants when I began the trial July 2024. It seems to be having incredible results for NSC lung cancer. The PDAC patients overall seem to get stability primarily, and some shrinkage. The side effects are very uncomfortable and unsightly but with phase 3 they have been prescribing drugs upfront that seem to curtail the visible effects. I was so glad to do it for 6 months as it allowed all my labs to be perfect again and physical activity a breeze. In hindsight, I may have left it too soon.
What is the rational for not removing the appendix? In one of my surgeries they removed gall bladder proactively.
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1 Reaction@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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1 Reaction@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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2 Reactions@markymarkfl We see the surgeon next week. I will ask for more details.
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1 Reaction@markymakfl This is the other part of the flyer I forgot to include.
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1 ReactionI officially signed up for the trial last Friday, had a baseline CT scan done this AM and will start treatment a week from tomorrow. I am in the trial arm that is QTX3034 twice a day orally and Cetuximab (Erbitux) via infusion every other week. I actually go weekly the first 4 weeks, but then will be on the biweekly schedule. My CT scan this AM showed little or no change to the various areas that showed up on my original questionable scan on 5/28 so that's a plus. "Indolent" metastases for sure, at least at this point.
I'm trying to stay positive and am ready to get started. A bit anxious, however, about the almost certain side effects of the Erbitux in particular the skin problems. I have been told I can start prophylactic Doxycycline to help prevent that from getting out of hand. Anyone else have any experiences/strtegies with that type of side effect from taking EGFR's? I guess one thing I have going for me is I had terrible acne as a teenager so maybe it will make me feel 50 years younger? LOL
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