My brother was diagnosed with Stage IV "pancreatic cancer" in January, FOLFIRINOX failed, we advocated for immunotherapy (against the skepticism of multiple oncologists) and a recent CT scan showed exceptional response. Below is the timeline followed by the story of how divine intervention, advocacy and immunotherapy saved my brother.

Important note: This involves a rare subtype (sarcomatoid features, ~3% of pancreatic cancer cases). I'm not claiming immunotherapy works for all pancreatic cancer — but if you or a loved one fall into that 3%, this information could change your treatment path entirely.

Timeline at a glance:

• Late December 2025 — ER with abdominal pain. CT reveals 17+ cm cystic mass on the tail of the pancreas and liver lesions.
• Early January 2026 — Biopsy confirms poorly differentiated carcinoma with sarcomatoid features.
• Late January 2026 — Starts FOLFIRINOX (standard pancreatic cancer chemo). Severe side effects on both cycles.
• Early February 2026 — Comprehensive genomic profiling results come back: KRAS G12I, PD-L1 TPS 90%, CPS 92, MSI-stable, TMB-low and no BRCA mutations.
• February 26, 2026 — Restaging CT and PET scan show progression: liver lesions significantly increase, reference lesions growing. FOLFIRINOX has failed after ~4 weeks.
• March 11, 2026 — First dose of pembrolizumab (Keytruda) (oncologists skeptical)
• March 19, 2026 — ER visit for temperature spike. Multiple tests showed no infection — the fever may have been an immune activation response, which can occur when immunotherapy triggers a strong immune system response against the tumor. CT shows: liver lesions stable to slightly decreased. Early signal of response after only 1 treatment.
• May 20, 2026 — Restaging CT: "marked decrease" in liver lesions (one down 70%, another down 50%+), primary mass slightly smaller, no new disease anywhere. Confirmed deep partial response.

From diagnosis to confirmed immunotherapy response: ~5 months. From chemo failure to scan showing dramatic shrinkage: under 3 months on pembrolizumab.

Our Story

As noted above, my family's life was turned upside down when my brother was diagnosed with Stage IV "pancreatic cancer" in January and given only months to live. Having a background in data analysis and more recently AI use, I became the data scientist for the family. Both the local oncologist and Mayo Clinic commented that the size of the mass was highly unusual, something I confirmed in my research. I also found that my brother's genomic profiling was also rare, such as the high PD-L1 rate.

Through prayer and fasting (divine intervention) I stumbled upon medical journals that indicated sarcomatoid features in pancreatic cancer (often referred to as SCP) could indicate a positive reaction to immunotherapy even without MSI or BRCA. The local oncologist blew us off but after exchanging several messages with Mayo Clinic they finally gave me a letter of recommendation to add immunotherapy to FOLFIRINOX. However FOLFIRINOX was killing my brother and there was no evidence to suggest it would work with SCP so we got a 3rd opinion.

The 3rd oncologist was also skeptical of immunotherapy but recommended we get a scan to see if FOLFIRINOX was doing anything before making a decision. CT showed significant progression on chemo so the decision to drop FOLFIRINOX was easy, however the 3rd oncologist advocated for trying Gemcitabine + Abraxane and was skeptical of immunotherapy, blowing off my research.

During this time I was also looking into trials (with the help of PanCAN, these guys are amazing) and found a promising trial where they combine immunotherapy with a KRAS inhibitor ((TLN-372 + Pembrolizumab) NCT Number: NCT07204340) so we headed to our 4th oncologist.

Initially the 4th oncologist also insisted that immunotherapy does not work on pancreatic cancer but took a minute to hear me out and look at my research, finally endorsing immunotherapy and putting us on the trial list.

First dose of immunotherapy was administered locally on March 11, 2026 (by skeptical oncologist #1). 7 days later on March 18th my brother's temp spiked to dangerous levels and he had to go into the ER where they immediately assumed an infection, however multiple tests showed none and CT scan showed early signs that immunotherapy (after only 1 week) was working. In hindsight, the fever was likely an immune activation response — his immune system ramping up against the tumor — not an infection. It went from a terrifying night to one of the first real signs the treatment was doing something. Weekly labs indicated continued liver function improvement, also indicating immunotherapy was working.

Fast forward to May 20th (after 4 immunotherapy doses), Restaging CT: "marked decrease" in liver lesions (one down 70%, another down 50%+), primary mass slightly smaller, no new disease anywhere.

Additional Notes:

1. I do not have a medical background but I utilized Claude Projects and Gemini Gems to help me analyze data, medical journals, labs, and conduct research. Ultimately my AI projects became a well-trained "oncologist" specializing in SCP (Sarcomatoid Carcinoma of the Pancreas). I spent hundreds of hours collecting data and fine-tuning my projects.
2. Oncologists are not looking for sarcomatoid features or elevated PD-L1 rates in pancreatic cancer patients, however ~3% of patients likely have this and could be candidates for immunotherapy.
3. I believe with all my heart that God intervened on multiple occasions to save my brother. It's a longer story but I want to advocate for faithful, diligent prayer and fasting.
4. My brother did take Fenbendazole between chemo and immunotherapy as well as a couple doses during immunotherapy. To be clear, I don't give it any credit but I want to be fully transparent. Some people (like Joe Tippens) give Fenben a ton of credit but I believe the science points towards immunotherapy. Whether or not drugs like Fenben and Ivermectin can help enhance immunotherapy or not I believe is unclear.

Recommendations — What I'd Tell Someone in Our Shoes:

1. Get comprehensive genomic profiling done immediately. Not just a basic mutation panel — get the full workup including PD-L1 testing, MSI status, tumor mutational burden, and ideally RNA sequencing. Companies like Tempus and Foundation Medicine offer these. Tyler's PD-L1 score of 90% was the single most important data point in his entire case, and it would not have been tested on a standard panel. If your oncologist hasn't ordered this, ask for it by name.
2. If your tumor has unusual features, question the diagnosis. Tyler's tumor was initially labeled pancreatic cancer and treated with the standard playbook. But the sarcomatoid features, sky-high PD-L1, rare KRAS variant (G12I), completely normal tumor markers (CA 19-9, CEA, AFP) despite massive disease burden, and unusual cystic morphology all pointed away from typical pancreatic cancer. If things don't add up — the tumor is unusually large, markers are unexpectedly normal, or the pathology mentions unusual features — push for additional pathology review at an academic cancer center.
3. Don't accept "immunotherapy doesn't work for your cancer type" without knowing YOUR tumor's specific biology. That statement is based on averages across a cancer type. Tyler's tumor is MSI-stable with low TMB — the two most common reasons immunotherapy gets approved — and he's still having a dramatic response. His response is being driven by PD-L1 expression and sarcomatoid biology, which is a completely different pathway. If your PD-L1 is high or your pathology shows sarcomatoid features, advocate for immunotherapy regardless of your cancer's general reputation.
4. Get multiple opinions from academic cancer centers. Tyler's local oncologist would not have recommended pembrolizumab. It took input from Mayo Clinic and Washington University/Siteman Cancer Center to get the right treatment plan. If you're at a community oncology practice and your initial treatment isn't working, seek a second (or third, or fourth) opinion at a major cancer center. PanCAN (Pancreatic Cancer Action Network) was an incredible resource for us in navigating this — I highly recommend reaching out to them.
5. If chemo fails quickly, that itself is information. Tyler's tumor blew through FOLFIRINOX in about 4 weeks — that's dramatically faster than the typical 6-month median progression-free survival. That primary chemoresistance, combined with the other unusual features, was actually a clue that this wasn't behaving like standard pancreatic cancer. A failed treatment isn't just a setback — it's data that should reshape the conversation about what to try next.
6. Be an active participant in your care. Our family researched clinical trials, tracked lab values week to week, coordinated between multiple institutions, and prepared specific questions for every appointment. You don't need a medical degree to do this — you need to be willing to read, ask questions, and not back down when something doesn't feel right. AI tools like Claude and Gemini made it possible for me to engage with medical literature I never could have understood on my own.
7. Track everything. I kept a running file of every lab result, every scan measurement, every doctor's note. When you can show an oncologist a trend line instead of just asking a question, the conversation changes. Data is your leverage.
8. Pray. I believe prayer and fasting played a role in guiding our family to the right information at the right time.

I fear I approaching that time soon with a loved one. They have deteriorated so quickly in the last month. My questions to you all are:

1. is there anything you did that you feel was the right thing for your loved during their last moments? For example, did you sleep in their room with them? hold their hand when they passed?

2. Is there anything you regret doing or wish you did to provide them with more comfort but also so that you are at peace with your Final moments together?

I hope my questions make sense. I’m a bit emotional right now. I wish everyone here better health and lots of love and gratitude to our caregivers.

Mom has been home in hospice since Mother’s Day. We are now at the end. I don’t know that she will make it through the night. I’m petrified.

Hello everyone,

I am based in Hungary, and my mother underwent Whipple surgery in 2019. After the surgery, she was advised to follow a diet, and take 50.000 units of Pangrol (pancreatin enzyme) with every meal. In the last few weeks, every pharmacy we go to said that they were out of the pills, and don't know when they'll get them again. There is no other true alternative in Hungary. Yesterday, we went again into a pharmacy, and they said that it has been discontinued and no one knows if there will be any replacement available. If anyone is based in Europe, some guidance would be very helpful, because no one knows anything.

My dad was diagnosed in October 2025. Symptoms started summer of 2024, he had 5 separate ERCPs and biopsies, all negative until the one in October. The hospital scheduled him for a whipple next day, and we pulled him for a second opinion, and sure enough within a week at the second hospital they confirmed it had already spread to his bones and spine and a whipple was not the right call. He hasn’t responded well to chemo. Can’t get our hands on daraxonrasib even though he’s a good candidate for it. He’s faced so many issues in the hospital due to mistakes, and while I’m trying to stay positive and forgive, it’s so hard. He lost 60+ pounds over a month due to a medical error that no one would listen to us about, until someone did, and they ‘fixed’ the issue but the damage was already done. We can’t look at the past, just trying to move ahead. But he’s so weak. He’s in the hospital again. He wants to get back on chemo, a new one they want to try, but he can’t. He’s not ready to give up but everything is failing him. He’s so scared and I’m so scared. I don’t know how im supposed to show up to work every day. I don’t know what I’m going to do without him. I’m so sorry to everyone here going through this. I’m with you. I want to hug you all. I’m so lost and just feel so alone. I miss him so much and he’s still here. I want him home. It feels so helpless. I don’t post much on Reddit and I probably won’t post again. But reading the posts here have me sobbing. You guys understand me, a complete stranger, in ways my best friends in the world don’t. I’m wishing all of you the best. None of us deserve this.

My dad (51M) was recently diagnosed with poorly undifferentiated adenocarcinoma on the body of the pancreas. The tumor itself classifies as stage 1b but he also has a small metastatic lesion on the liver. Outside of that, no other spots have been found. He’s already started FOLFIRINOX but I was reading in some cases of having 3 or less mets, if it responds to chemo then they can surgically resect both spots. Has anyone else experienced this? And if so, how were you treated?

I’m writing this a few weeks after my sweet cousin passed. She was diagnosed with Stage 4 in February 2026, seemingly out of nowhere - She was just fine, vibrant and loving her life, deciding she was going to start dating again. One night of severe back pain and everything changed.

It happened so quick, I’m still in shock that she’s gone. She passed almost 2 months after diagnosis… and it was a horrible, awful 2 months. I struggle with why this happened to her so young, why it was so quick, why she was given so little time after diagnosis with not even a chance to try chemo.

This disease is just horrible. I wish this was a hopeful, positive post, but nothing about what happened has any silver lining.

My mom (69f, stage 1, post-whipple) was hospitalized less than one month ago for an abscess that had formed in the post-Whipple surgical bed due to a small leak in a surgical connection. The symptoms that led to her ambulance ride to the ER included chills, involuntary shaking, fever, elevated heart rate, confusion, thirst, fatigue.

They treated the abscess with IV antibiotics. The surgeon had already opened up the incision a few weeks prior to allow the fluid to drain. (Please see my older posts for more detailed info).

In addition to the abscess, the CT scan had showed that necrotic tissue and inflammation were pinching the SMV.

When she was discharged from the hospital they prescribed oral antibiotics for 14 days. About 2 hours into our drive home from the hospital she had yet another episode of chills, fever, etc. I wasn’t expecting the episodes to continue after she received treatment and was discharged, so I called the surgeon who simply said, “it doesn’t sound like a change in her condition”. He believed the episodes were an inflammatory response to necrotic tissue.

Upon arriving home she was constipated for a few days and then began having loose stools.

During the follow-up visit the surgeon noted his concern regarding the pinched SMV and prescribed blood thinners. He was confident that the leak would continue draining from the open incision and heal itself. He informed me that he had intentionally packed the necrotic tissue there to protect healthy tissue in case of a leak at the connection site. He also instructed my mom to increase the amount of Creon she took with food hoping it would alleviate the loose stools.

Over the next 2 weeks the drainage slowly stopped. The wound looked very healthy and was healing nicely. But my mom continued to have episodes of chills/fever followed by extreme fatigue; her fever hovered around 99/100 and resolved with Tylenol. The surgeon still wasn’t concerned as her bloodwork continued trending in the right direction.

My dad and I started becoming suspicious that she was experiencing cholangitis, or “whipple attacks” minus the pain.

Over the past week the episodes increased in frequency, and the fevers began spiking to 102/103. Yesterday morning she experienced two back to back episodes and also had profuse diarrhea.

I called the surgical team, detailed the changes, and requested they order more labs, hepatic function panel testing, and a stool sample to test for C. Diff. Due to the higher temperatures of the fevers and increased frequency of the episodes they instructed us to go back to a local emergency room.

My poor mother was so upset when I told her we had to go back to the ER. I told her (essentially lied to her in hindsight which makes me feel pretty bad) that they probably would just run tests and send her home. I was hopeful I guess. Alas, she was admitted.

Concerned about sepsis, the local ER put her on IV antibiotics immediately.

This time the CT scan showed an infected clot in the SMV/Portal Vein (Septic Thrombophlebitis), shunting of the liver, and colonic thickening - later she was able to produce a stool sample and tested positive for C. Diff.

This morning she was transferred back to the hospital where she had the Whipple…she arrived about an hour ago. My dad and I are currently on our way out to see her now.

At the moment my relief about finally having some answers is overshadowing any negative emotions I have about the situation. I’m feeling hopeful that the medical team knows exactly what’s going on and will know how to treat it. The mystery episodes of chills and the toll it was taking on my mother were really hard to watch, and I was beginning to fear it was a new normal for her.

Of course, I know nothing is guaranteed with this disease and the recovery from such an intense surgery. As scary as it all is, at this moment I feel it’s going to be okay.

Now for the time being I just need to try to keep her spirits up.

Will post updates regarding progress and treatment.

My dad - 58 years young and my best friend - started hospice on Monday. To say he’s fought hard and been through a lot is a gross understatement.

We lost his mom to this disease so while I knew what was coming, I can’t help but have moments where the reality comes crashing down and I think to myself, “how did this happen to us?”

To see him so painfully thin, so vulnerable.. unable to walk .. become unresponsive at nights. Right now, I’m powering through but I know this will ultimately destroy me.

I had my first baby a year ago and have basically been living with my parents these past two weeks and will continue to do so. I started a new job two months ago and work from their house and my husband comes back and forth with our son every other day.. I feel .. shattered. Hanging on by a thread.

My question is.. how do you get through this part? 💔💔

I wanted to share that a trial coordinator at Penn reached out to tell me slots are opening up for NCT06445062 - a RevMed trial including Daraxonrasib or Zoldonrasib with various chemos. I had heard this trial was only recruiting colorectal patients when I started my search in April but she shared today that slots are opening up. Also for patients with MTAP loss, the Tango Therapeutics trial (NCT06922591) that combines TNG462 with Daraxonrasib or Zoldonrasib was still recruiting as of 4 weeks ago. There was a slot at NYU we passed up for another institution. My husband is on this one - only about 2 weeks in but seems to be tolerating it tremendously well. Will share more about the experience in time but I wanted to make sure folks searching for something knew about these slots.

Is there any long term survivor after total pancreatectomy? I really need some encouragement for my mom. She had her surgery two months ago, but we were told cancer spreads to liver and prognosis 6 mths. Im not going to listen to estimation. I’m going to fight it through with mom and be the 1%! Would really be thankful if I can hear from the 1%!

My beautiful mother lost her battle to pancreatic cancer yesterday. She was diagnosed almost 2 years ago. She beat breast cancer 3 times in 13 years but this was a different beast.

She was only 63. In the past two years she was undergone surgery to remove her pancreas, spleen, and gallbladder making her diabetic. She did countless chemo sessions and got an all clear last June. By August they had found it spread to her abdominal wall and tried more chemo by April it was in her liver and colon. She fought so hard and was willing to try anything but in the end it was just too much. She was on hospice for less than 2 weeks.

My mom was the kindest and most caring person. She loved her family, dogs, work, tea, and so much more. All she knew was love and she offered it freely to everyone. The world is a darker place without her. I will miss her everyday for the rest of my life. I was her caregiver and my life feels empty now. I would do anything to have her back.

I hoped we had more time before this but here we are. He was only just diagnosed at the end of February, and he was so healthy before then. It’s still unbelievable.

Hey all! My husband is set to have the whipple with Dr. Wolfgang here soon. I’m trying to figure out what to expect as far as how long people have stayed after the surgery. Who has had surgery there and how long do you typically stay afterwards? Did you have a caregiver stay in the room with you? I’m trying to figure out if that’s allowed for overnight and if I am able to stay. Do they have a setup for the caregivers? Where do you recommend getting food? Also, we have family coming in to stay in nearby hotels. Which ones would you recommend? Any other advice or helpful information since we are unfamiliar with the area?

Hi everyone. I’m hoping to hear from anyone who has personal experience with switching from FOLFIRINOX to FOLFOX due to side effects, or any guidance/hope you may have to offer.

My mom was diagnosed with stage 4 pancreatic cancer in mid March. She had her first round of FOLFIRINOX at the beginning of April and unfortunately had extremely severe side effects- nonstop nausea, profound fatigue, severe dehydration, diarrhea, and malnutrition. She ended up briefly hospitalized afterward.

For her second round, they significantly reduced the irinotecan and oxaliplatin doses, but somehow the side effects were even worse this time. She had nonstop nausea and vomiting despite medications, horrible diarrhea despite taking Imodium daily, and overwhelming fatigue again. She ended up hospitalized for 8 days and missed her third round of chemo because of it.

She was supposed to make up that treatment last Thursday, but her oncologist decided to delay another week because although she’s feeling immensely better overall, she’s still pretty fatigued. He asked if she’s spending more time up during the day than resting, and she honestly said no, so he wanted to give her another week to regain strength.

Tomorrow she is finally supposed to get her third round, but they are switching her from FOLFIRINOX to FOLFOX.

I guess my biggest questions are:
- Has anyone here switched from FOLFIRINOX to FOLFOX because of side effects?
- Did the switch help make treatment more tolerable?
- Was FOLFOX still effective in keeping tumor growth under control?
- Did anyone regain some quality of life after making the switch?

I know everyone responds differently, but right now I think we’re just looking for some hope and reassurance that this can still be an effective path forward even if she couldn’t tolerate FOLFIRINOX.

Grateful for any advice, experiences, or encouragement. 🤍

I have all the symptoms of pancreatic cancer of the tail.

It started in 14th October 2024, I was on GLP-1 for 11 months. I injected as normal and within 10-20 mins I developed this deep scratchy niggling sensation in left flank. It lasted all day and wouldn’t go away. I immediately thought of pancreatitis as I know that was a risk.

The next morning I woke up and the sensation/pain was gone. I didn’t take the GLP-1 for the next day or two to see if it came back. It didn’t so I started taking the GLP-1 again (so stupid), I wa son it for 1-2 weeks before the pain returned the first week of November. So I stopped taking the GLP-1 that week.

Symptoms the first 2 months were the deep scratchy niggling sensation deep in left flank wrapping into left mid back. It wouldn’t go away, it didn’t change with movement or twisting and couldn’t be touched.

In December 2024, I developed left upper quadrant very light vague dull pain in the region 3-4 fingers below last rib bone left side. It would come after eating especially fatty food. I also had excessive burping on and off. I was loosing weight unintentionally. I also developed certain vertebrae in my mid to lower spine were tender and sore to touch.

In January 2025, the flank and back pain started to worsen and became a dull deep bruised ache like the aftermath of a punch, the scratchy internal sensation and burning and would worsen after eating particularly the bruised sore punch aftermath.

Then in March 2025 I suddenly developed this left shoulder blade pain that hurts to take deep breaths or push on my ribcage. I just woke up one morning and it was there, this has happened on and off throughout my 19 months of symptoms and later on I noticed a connection with eating would trigger it. My weight loss had stabilized, would go up and down afew lbs but remain within that.

In July 2026, I developed fat triggered vomiting for a week, and widespread abdominal pain began, like cramps, upper epigastric region, lower abdomen, belly button and sides of bellybutton, this would come and go throughout the day but was daily. It worsened over weeks and started becoming more and more constant, more severe and would worsen with food. It became more focused to upper epigastric region down in a jagged line to bellybutton.

By end of August 2025, it had worsened and felt like cramping, twisting, spasms, like a wet cloth being wrung out, like a drill drilling into my bellybutton and like rats trying to claw out. I developed radiating pain to base my neck and up my throat.

And by start of September 2025 it was so severe I was hospitalized and experienced a week long bout of fat triggered vomiting again, I got a right sided splanchnic nerve block in end of September with Depo Medrol which helped the abdominal pain but not the flank and back pain.

In December 2025, the abdominal pain started breaking through the block for a week and then went back to not feeling it. Then in January and February I felt breakthrough abdominal and throat pain again and then its like the block kicks back in.

In February 2026, I developed left hip pain with my period, it was sore to move and walk, stiff and feels like inflammation but would go away when my period was over. I also developed wide spread body pain when I eat too much sugar.

The left hip pain came and went with period in February, March and April 2026 and left when period was over but then in May 2026 and never left and is constantly sore.

I have done CT, CT Pancreas Protocol, CTA, PET FDG, MRI/MRCP and EUS and multiple EDG, Bloods, small pill camera, colonoscopy.

I’m not in month 19 of symptoms. I haven’t had more testing since very beginning of month 16

Nothing has been found.

Nothing else makes sense or fits my timeline of where or how the symptoms started and progressed but because all tests are clear all specialists are closing the door on me and saying functional disorder of some kind without an actual diagnosis of anything.

I feel like I am dying.

Has anyone or their loved ones have symptoms for over 19-24 months before diagnosis? With multiple advanced testing not finding any tumor?

Mom is 90, pancan stage 4. Is so so terribly frustrated that she can't eat more that a tiny amount of food. She does manage to drink shakes etc, with great difficulty. I doubt she gets 500 calories at the moment per day. Desperately looking for ideas to concoct that have the most calories per sip. We combine Ensure with chocolate milk, will try to make meat broth, any ideas much appreciated.

(Added later)

One of the difficult things is that it's not that she isn't hungry, she's very hungry and wants to eat, but our understanding is that the tumor is pressing on the stomach and preventing it from expanding, I don't know if that's the right term, but basically this causes an almost immediate feeling of being full. And this is why it's difficult to get food down. Is this the case? And if so, what will any medication help with? I mean if it's a physical thing.

My wife was recently diagnosed with stage 4 pancreatic cancer, I’m just looking for a little hope.

TLDR: My partner's mother (72F) was diagnosed with pancreatic adenocarcinoma in March 2026 and started chemo 28 days ago. Tonight she was admitted to the hospital with jaundice, high bilirubin, dehydration, and anemia. Initial indication from her doctor is that it is chemotherapy toxicity rather than tumor progression, and the plan is to stabilize her and resume treatment. Looking for experiences, insight, and honest perspective from people who have been through something similar. I've never dealt with cancer in my family before.

My partner's mother is 72 years old. She has a prior history of colorectal cancer 10+ years ago, for which she was successfully treated and has been closely monitored with regular oncology checkups since. Her tests all came back completely clean in October 2025.

In November 2025 she came to visit us in Europe (she lives in South America) and developed what we thought was bronchitis. She returned home in January 2026 still unwell, and further investigation revealed she had actually had bilateral pneumonia. During that workup, doctors found a small pancreatic lesion (~1.8cm) and noted her CA 19-9 had started rising rapidly (approximately 500, then 1700+, and continuing to increase).

A PET-CT was done and showed:

• No hypermetabolic activity in the pancreas (atypical for pancreatic adenocarcinoma)
• No obvious liver lesions
• Multiple mildly to moderately hypermetabolic lymph nodes both above and below the diaphragm (SUV values mostly 2-4)
• Residual inflammatory lung changes from the pneumonia
• Lymph nodes described as "suspicious for secondary involvement related to underlying disease"

She then underwent an endoscopic ultrasound-guided biopsy. Results came back March 31, 2026: WHO pancreatic cytopathology Category VI (unambiguously malignant), histologically compatible with pancreatic adenocarcinoma.

She started chemotherapy on April 21, 2026, so 28 days ago. Weekly cycles with a portable pump. She has a cold sensitivity side effect where touching cold things feels like an electric shock. The first round was very rough with significant nausea. Subsequent rounds were slightly more tolerable.

Throughout this period she has lost 7-8kg and now weighs approximately 38kg. Her baseline was around 45-50kg. Appetite has been poor throughout.

Over the past few days my SIL who lives with her noticed she was looking yellow. Today she went to a routine nutritionist appointment, had blood work done, and her oncologist admitted her to the hospital immediately. Bilirubin was reportedly very high and her full blood panel came back with concerning values. No major night sweats, no unexplained persistent fevers, no generalized itching noted.

We have now heard back from the doctor. It appears the jaundice and high bilirubin are caused by chemotherapy toxicity rather than tumor progression or liver involvement. She is also dehydrated and anemic. The plan is to keep her in the hospital to stabilize and recover her, then resume chemotherapy next week or the week after depending on how she responds. Chemo may be paused temporarily but the overall treatment plan remains intact for now. This is a relief, though we are still waiting on full imaging and bloodwork confirmation.

The original plan was to reassess after 3 months of chemotherapy (around July 2026) to determine whether she had responded well enough to proceed to surgery. That milestone is still the target.

I want to add some personal context: I have never dealt with cancer in my family before and this is all very new and frightening. She is my partner's mother and we live far away from her in Europe. I don't know what to expect as this progresses, I don't know how to support my partner properly, and I don't know what questions we should be asking the doctors.

My partner is planning to travel back to be with her in July, timed around that reassessment appointment. We also have a vacation planned this coming Friday that was booked before any of this happened. Tonight has been a lot.

Any perspective from people who have been through something similar, whether as a patient's child or as a partner watching from the sidelines, would be really appreciated.

Questions:

• Has anyone experienced chemotherapy toxicity causing jaundice and high bilirubin in a pancreatic cancer patient? How was it managed and did treatment continue successfully afterward?
• The PET-CT showed no hypermetabolic primary tumor, which I understand is atypical for pancreatic adenocarcinoma. Has anyone had a similar diagnostic picture?
• Her CA 19-9 was clean in October 2025 and she was diagnosed in March 2026. Does this timeline match others' experiences? It feels shockingly fast.
• She is 72, weighs 38kg, and is clearly struggling with treatment tolerance. Has anyone navigated chemotherapy with a very low body weight? Did doctors adjust dosing?
• For those who had a parent go through this: how did you support your partner from a distance, and how did you know when it was time to drop everything and go?
• I understand pancreatic cancer is one of the most difficult to overcome. Should I be preparing myself mentally that she won't reach 2027?
• My partner had always planned to go in July to be there for the reassessment and potential surgery decision. Given how quickly things can change with this disease, should I be encouraging him to go sooner rather than waiting for July, or is it reasonable to trust his judgment on the timing? I don't want to overstep but I also don't want him to regret not going earlier. How did others navigate this?

Any tips, stories, insights, etc are highly appreciated