r/pancreaticcancer • u/ZevSteinhardt Patient 55M (2023), Surgery (2025, non-Whipple) Currently NED! • 2d ago
September 2025 Check-In Thread (a little early)! How's Everyone Doing?
Hi, everyone! Time for our monthly check-in for those who are diagnosed with pancreatic cancer or their caregivers. You can describe how you're doing (hopefully well) and how things are going well for you (feel free to include personal wins that aren't cancer-related, if you like).
My apologies that this thread is a bit early, but I will be away on the first, so I'm doing it now. :)
My personal "check-in" (with big news!) will be in a comment below.
Zev
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u/ZevSteinhardt Patient 55M (2023), Surgery (2025, non-Whipple) Currently NED! 2d ago
So, so far, no news is good news :)
Originally, post-surgery, I was going to be put on a PARP inhibitor (Lynparza), due to a mutation (PALB2) that my tumor had. However, they sent my tumor to another lab and they didn't find the mutation significant, so for now, I'm not taking anything. My oncologist felt it better that way, since Lynparza has some side effects.
I have another follow up appointment with my oncologist in about two week. In the meantime, I'm feeling much better and looking forward to my Yellowstone trip next week.
One of my hobbies is landscape photography (shameless plug: please feel free to check out my work at www.zevsteinhardt.com ). Before I got sick, I used to take a photography trip every fall, usually to one of the US National Parks. However, for the last two years, I have not been able to do so, due to just being so sick. Depending on how this Yellowstone trip goes, I may actually be able to seriously consider returning to this and planning one for this year (maybe Zion NP?).
Zev
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u/ZevSteinhardt Patient 55M (2023), Surgery (2025, non-Whipple) Currently NED! 2d ago
Oh, and in the "small victories" department: my eyebrows and eyelashes are coming back in! :)
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u/Nondescriptlady Patient 52F (dx January 2024), Stage IV, FOLFIRINOX, SBRT 2d ago
There are no small victories, I think, in this realm. Just victories! And it sounds like things are going very well, I'm.so happy for you!!
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u/ImpossibleEnthesis 2d ago
Great news, Zev! How’s Torah coming?
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u/ZevSteinhardt Patient 55M (2023), Surgery (2025, non-Whipple) Currently NED! 1d ago
It’s coming along nicely. I’m currently in the middle of Exodus 13, almost a third of the way through the whole thing.
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u/NefariousEJ 2d ago
2½ years on 1st line chemo+trial Tumors are still there but stable Continuing 5FU + trial
Since April Retired Took pottery class Got back in 'shape' (really clean eating) Re-landscaped yard Bought a Wrangler Rubicon (bucket list) Off-road trails every week Several fishing and camping trips Get to see teens a lot, including all sports Visited family Surprised visited friends for birthdays Watched sunsets in a kayak
Thank you for the support and information!
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u/Nondescriptlady Patient 52F (dx January 2024), Stage IV, FOLFIRINOX, SBRT 2d ago
Doing alright, had my 21st Folfirinox infusion yesterday (technically still on it, got my bottle attached to me:)
Have my first scan since restarting chemo next week, and little nervous about that, I'm hoping it has good news.
Other than that, I'm.just ticking along, and I'll take it:)
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u/San-Onofre 58M, Stage 4 w/liv mets,Nalirifox, H-tripsy x 1, failed maint 2d ago edited 2d ago
I think July 24th was my 1 year anniversary since diagnosis. I’m quite fortunate because I just qualified for possibly the greatest trial I ever heard of. (NT-112-301)
Apparently I have the KRAS G12D mutation, which I was previously unaware of. I also express an HLA molecule called HLA-C*08:02. These all qualify me for this trial in which the conduct Leukapheresis where they collect my white cells, they then wipe out my bone marrow and then keep me alive in isolation in the hospital for a couple of weeks. Then they give me back my genetically modified (with CRISPR gene editing technology) white killer T cells. Those get established in my marrow and get to work killing cancer.
The oncologist I spoke to basically said it’s not just a matter of improving symptoms, 60% of the patients get “long term remission”
So that’s the best news I can recall in a long time. Still filling up with ascites in the mean time . So it could not have come at a better time 💪🏼👍🏻
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u/Educational_Gur5065 2d ago
Please keep us updated with it I’ve been keeping up with you for a while in the shadows on here but I’m really excited for you about this trial!
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u/San-Onofre 58M, Stage 4 w/liv mets,Nalirifox, H-tripsy x 1, failed maint 2d ago edited 2d ago
Yes,absolutely I will. I have a feeling that adapting this trial to other recipients with a less restrictive HLA expression is going to produce research in the future. It’s just crazy to me that I’m able to latch onto CRISPR gene editing technology that I’ve read about in the news over the last several years. And all this in time to possibly save my life.
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u/rowdyrowdylibrarian 2d ago
I’m having my Whipple surgery next Friday, so I’m a little bit scared about how I’ll feel after, but I’ll be glad to get rid of Marvin the Tumor, too!
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u/ImpossibleEnthesis 2d ago
My husband had an amazing recovery experience, so try to stay positive and let yourself heal. All the best to you and your team. Keep us posted and be well! 💜💜💜
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u/Fun-Mathematician980 2d ago
This month, my grandfather (72) was diagnosed with pancreatic cancer, and the tumor was so large that he couldn't eat. Today, he had Whipple surgery. The PET CT and contrast-enhanced CT scans showed that only two lymph nodes were affected, but the surgeons discovered metastases in his liver. He is currently in the intensive care unit after the surgery. I don't know what to do, and I feel emotionally overwhelmed. However, the doctors are still discussing further chemotherapy and treatment options. I love him so much and feel sad that he needs to go through all this.
I hope you guys go better!
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u/clarkindee 2d ago
We are ticking a long here. My husband finished nine rounds of Folifirinox and had good response -- main tumor shrunk, liver met disappeared from scan. Oncologist talked us into taking break on Xeloda to give my husband's body a rest. He began Xeloda third week of July. We have CT scan scheduled next week to check progress. His CA 19-9 had crept up last creep up was almost 80 points, so I'm frankly terrified, although he feels fairly well and is eating well. His feet are swollen, but not too bad. His main prob is still the diarhea and his potassium count crashed due to that. We are taking the PO supplements now, which will fix it. I've been using the liquid hydration sticks which I think help him, as well. Anything to stave off dehydration. We are doing 2x week IV C infusions (75 mg) with an integrative practice.
We have been unable to find his genetic profile having failed two EUS and one liquid biopsy, everything comes back "insufficient material". The oncologist says we need to have disease progression to try again, which is frightening. We like our team at Johns Hopkins very much but we are thinking seriously of a second opinion, probably at MSK, just to do our due diligence. That will be our next step.
Strength and peace to everyone on this journey.
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u/SoloAsylum Caregiver (2022-8/24/2024RIP), Stage 2->4, folfirinox, Gemabrax 2d ago
Hanging in there as an ex-caregiver. Life kinda turned into a "I don't know what to do with my hands" kinda thing once the caregiving ended, but time moves on and doesn't wait for no one.
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u/FreckledTreeDweller Patient (2024), IIB+, Whipple, mRNA Vaccine, Chemo 1d ago
No detectable signs of cancer in the last two scans and I have done the hardest part - six months of chemo. I had a Whipple last July, six weeks of immunotherapy, six very difficult months of chemotherapy that ended May 7th, and am half way through another 6 months of immunotherapy.
Very tired, more pain than I would like, but generally doing well. I have been able to work full time, I have worked up to running 10 miles a week and walking most days.
I cannot predict how well I will be doing in a given week, and that makes it hard to plan. When I am hurting, my wife is also hurting, and I don't like that. I have a variety of random symptoms. So I'm doing well on the whole, and my complaints are minor but real.
I had no idea I would be alive or doing this well a year ago. Increasingly, I'm returning to normal life, interrupted by infusions and medical appointments.
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u/ImpossibleEnthesis 1d ago
We are doing well here. My husband’s hair is coming back (snow white!) and we actually traveled to see our son. First time we’ve left the house/hospital space in more than a year. I never saw the anxiety from that coming. The 2nd scan post Whipple is complete and he rang the bell! I cried for a week I think. We truly believe if my father hadn’t died from this disease my husband wouldn’t be here. 2nd time caregiver role ending is equally as disorienting, but my new ft job is finding the clinical trial our oncologist wants him in. We’re also going to continue aggressively working to fund research. 💜💜💜
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u/RdTripTrvlr66 1d ago
5 and a half months post Whipple from PNET. Still losing weight but working with dietician. Looking forward to an upcoming trip to visit grandbaby, who lives halfway across the country and was born just weeks before my surgery. Wishing you all the best! 🙏🏼
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u/mtytfto 2d ago
💜💜💜 This month will be 10 years since I stopped my chemotherapy. Had the Whipple in January of 2016 and the tumor was dead! I was stage 4 with spots in the liver and intestines. Tumor was wrapped around my portal vein and artery. Ca-19 started at 38,000 —I hear to tell everyone— Don’t stop fighting and living. Everyone is different and miracles happen everyday. This cancer sucks but more people are surviving everyday.