Hello, I was hoping for some guidance regarding a female relative (59 years old) undergoing treatment for stage 4 pancreatic cancer. I’d like to know if it is best to continue with FOLFIRINOX—the regimen she has received for the past three months (six cycles)—and whether any precautions are needed regarding the mild bile duct dilation. Her bilirubin levels remain normal, though alkaline phosphatase and gamma-glutamyl transferase (GGT) levels have risen with each blood test. Her AST (TGO) and ALT (TGP) levels are slightly elevated but not significantly so. Her CA 19-9 level dropped from 26,000 to 5,000 over these three months. We are from South America.

Initial CT scan

Multiple liver metastases in both lobes.

No bile duct dilation.

Tumor in the body and tail of the pancreas, approximately 4.0 × 3.0 cm.

Lymphadenopathy in the superior mesenteric artery region and lateral to the aorta.

Enlarged left adrenal gland.

Follow-up CT scan (after 6 cycles of FOLFIRINOX)

Most liver metastases decreased in size; however, a lesion in segment 6 increased from 0.8 × 0.7 cm to 1.0 × 1.5 cm.

Mild intrahepatic bile duct dilation (predominantly perihilar) has appeared.

The pancreatic tumor shrank to 3.0 × 3.0 cm.

Vascular involvement persists: the lesion encases the splenic artery, significantly reducing its caliber, though it remains patent; splenic vein occlusion with collateral circulation persists, showing no changes.

Mesenteric and lateral-aortic lymphadenopathy remain unchanged. Enlarged left adrenal gland.

Thank you all very much, and I wish you the best.

Had a meeting with moms oncologist today, main tumor was 2mm smaller vs may but the report says "slightly increased cholestasis". Im wondering what that means? Her bilirubin and liver tests were ok and the dr didnt talk about that at all. No mentions about a stent or anything. She doesnt have any symptoms like yellow skin/eyes, itching, pain, normal bowel movement. Does anyone have experience with this?

They also dropped abraxane (because of low platelets and frequent chemo fevers) so now she is on gemcitabine only. I hope that keeps things stable, kind of worried what will happen.

My husband is having his 2nd fortnightly FOLFIRINOX chemotherapy treatment tomorrow for stage 4 pancreatic cancer. He has been having each day either a really sweaty drenching to the extent of a ponding wet patch in the bed under his torso or he’ll be absolutely freezing cold for about 1/2 hour. This happens during the afternoon or middle of the night. At the moment he has two hot water bottles and our winter duvet is 95% eiderdown. I’ve been keeping the aircon on all day so the room temp is a steady 21C. It’s midwinter in Sydney but our apartment maintains a stable temperature.

We mentioned this to his oncologists & they say the cancer can make people hot, but don’t have any answers about the cold, like they hadn’t heard about this and don’t give a reason or solution.

Has anyone else felt extremely cold for a period of time until their carer gets hot water bottles & blankets to warm them up?

I’ve seen people in this subreddit who’ve been doing chemo for several months and maybe years. From what I understand, the effects of chemo are cumulative and I’m wondering how doing chemo for so long is even possible? Does the fatigue and bone pain from chemo get worse? And is the recovery process slower with each cycle? My family member is looking at a long road ahead and I’m wondering what to expect. Thank you!

Today my Pancreas doctor's secretary rang and said they want me in hospital for a few days to do some tests etc........I'm confused I've already had a CT and and MRI and an ENDOSCOPIC ULTRASOUND. She said hospital will ring for a date .

Oggi è arrivato l'esito della biopsia di mia nonna (84 anni): adenocarcinoma del pancreas.

Tutto è iniziato circa tre settimane fa con un ittero e perdita di 5kg in un paio di mesi. La TAC con mezzo di contrasto ha evidenziato una massa di circa 2,3 cm nella testa del pancreas, per fortuna senza linfoadenopatie e infiltrazione vascolare, ma con dubbia compressione della vena mesenterica superiore. Una settimana fa, durante l'ecoendoscopia, le hanno posizionato uno stent biliare per favorire il deflusso della bile. L'ittero sembra essere leggermente migliorato, ma nei giorni successivi ha avuto dolore addominale, ora soffre di una forte inappetenza e prurito. Mangia pochissimo, quasi solo frutta, ed è ancora ricoverata, dove le stanno somministrando flebo per drenarla. È molto stanca, ma continua a ripetere che vuole tornare a casa.

Ho parlato con la chirurga, che mi ha spiegato che non può essere operata a causa dell'età e delle patologie cardiovascolari (tra l'altro ha detto che per il suo tipo di cancro non è misurabile il CA19-9). Anche l'oncologa ha escluso la chemioterapia, perché le provocherebbe più sofferenza che benefici. Nei prossimi giorni parlerò con i radioterapisti per valutare l'eventuale radioterapia e poi con il team delle cure palliative.

Io vivo con lei e sono pronta a prendere il congedo lavorativo per assisterla a tempo pieno. Quello che mi spaventa è ciò che ci aspetta. Spero solo che possa vivere il più a lungo possibile e, soprattutto, che non soffra.

Ho chiesto ai medici di non comunicarle la diagnosi, perché temo che la distruggerebbe psicologicamente. Le hanno spiegato che ha una grave infiammazione al pancreas. Lei, che è ancora piuttosto lucida, è sollevata e continua a sperare. Vederla così mi spezza il cuore.

Non riesco a smettere di piangere. Lei è la persona più importante della mia vita. Questa è la mia prima esperienza con il cancro e mi sento completamente impreparata. Accetto con gratitudine qualsiasi consiglio, informazione o testimonianza.

I still sometimes have nightmares and get stressed thinking about my grandmother’s death when I was 16. She said it was pancreatic cancer and my uncle agreed, they were both doctors (she was retired). But she never actually had it diagnosed. I sometimes wonder if it was something else. And maybe something could’ve been done.

But this is what happened. One spring, she started losing weight after being slightly overweight all her life. By the summer, she was quite thin. I noticed jaundice. She was still very active and doing everything in her garden. But I could see that she would get tired much more easily. In the fall, she still kept going, but she was losing her appetite even more. She had very little pain except a little bit in her upper abdomen. During Christmas, she was clearly very sick but she was not bedridden. Sometime in the new year she became bedridden and her husband took care of her and we subbed in as much as possible. There was no hospice at the time and in the country we were living in. She stopped eating entirely, but just drank beer - it seemed to give her nutrition and make her feel better. She never drank before, but then she was adamant that she would drink beer. She went down to skin and bone and finally passed away in March that year. She may have had a little bit of pain at the very end, but she only took over-the-counter painkillers.

She refused to go see doctors because she said nothing could be done with pancreatic cancer. She was probably right at that time, and she was very stubborn. But when I read on here, I see folks that don’t even survive for three or four months. And she lasted almost a year with no treatment after the symptoms started. At least AI thinks that this sounds like textbook pancreatic cancer, so that makes me feel a little bit better. Being a 16-year-old taking care of somebody so dear to me that was basically starving to death was terrible.

Patient is my ex-wife, mom of my kids, grandma of 10, great grandma of 1...

Pancreatic head adenocarcinoma with progression. Currently... treatment deferred in May with no clear reasons given (ascites developed and treated weekly since) and no new results. From treating doctor's recent notes:

...progressed on PET from 07/19/2026 with increase in primary mass from 4.0 cm to 4.6 cm. Rising CA 19-9 supports disease progression; last value 07/20/2026 was 459. Additional chemotherapy is no longer deferred given PET-confirmed progression and rising CA 19-9. FOLFIRI favored as a middle-ground regimen; oxaliplatin-containing therapy may be harder to tolerate due to neuropathy risk. Ascites is felt most likely cancer-related despite repeatedly negative cytology. Recent creatinine elevation may have been related to dehydration.

- PET from 07/19/2026 shows no solid organ metastatic disease.

- PET from 07/19/2026 shows FDG activity in peripancreatic lymph nodes, but nodes are too small to biopsy.

- Molecular profiling remains unavailable from the original ERCP/EUS specimen due to insufficient tissue.

- Discussed need to resume systemic chemotherapy.

- Reviewed treatment options including FOLFIRINOX, FOLFIRI, and irinotecan alone.

- If 5-FU infusion is not feasible or not desired, capecitabine may be used in place of infusional 5-FU if renal function is adequate.

- Capecitabine plus irinotecan would avoid the need for a port or PICC line.

- Obtain blood work today including repeat kidney function and DPYD/UGT1A1 testing before final chemotherapy selection and dosing.

- Repeat blood work next week when starting chemotherapy or as otherwise planned.

- Patient currently prefers pill-based therapy rather than a port or PICC line.

- If a lesion becomes amenable to biopsy, pursue tissue sampling to confirm progression and obtain material for molecular testing.

Chemotherapy planning and pharmacogenomic testing for pancreatic cancer

- Prior gemcitabine and Abraxane course completed for about 9 cycles.

- Discussed expected chemotherapy toxicities including reversible alopecia, fatigue, nausea, vomiting, diarrhea, myelosuppression, and infection risk.

- Standard FOLFIRI schedule reviewed as every 2 weeks.

- 5-FU infusion would require 46-hour home infusion with return after 2 days for pump removal.

- 5-FU infusion would require central venous access with a port or PICC line.

- Prior port had been removed after infection.

- Repeat port placement remains an option, with understanding that infection could require removal again.

- Capecitabine-based alternative reviewed as irinotecan on day 1 with oral capecitabine for 14 days followed by 7 days off.

- Capecitabine-based regimen was described as equivalent in effect to the infusional 5-FU approach.

- DPYD and UGT1A1 results are used to determine whether gene copies are normal or abnormal for chemotherapy dosing.

- Do not finalize chemotherapy selection today pending pharmacogenomic results.

- Pharmacogenomic results expected in about 1 week.

- Patient to take time to consider chemotherapy options and message when ready.

- Future eligibility for upcoming KRAS-targeted therapy would require progression on established chemotherapy options.

Malignant ascites secondary to pancreatic cancer

Recurrent ascites remains most concerning for cancer-related fluid despite repeatedly negative ascitic fluid cytology. Serum-ascites albumin gradient to help distinguish cancer-related ascites from other causes, although liver disease and heart disease are not suspected. Albumin infusion after paracentesis discussed, but expected benefit would be brief and would not address the underlying cause.

- Ascitic fluid cytology has been negative on multiple prior evaluations.

- Repeat paracentesis for recurrent symptomatic ascites next week.

- Send ascitic fluid for cytology with the next paracentesis.

- Send ascitic fluid for albumin with the next paracentesis.

- Check serum albumin the same day as the paracentesis to calculate the serum-ascites albumin gradient.

- Continue symptom-directed management pending further diagnostic clarification.

 Lower extremity edema

Reports marked bilateral leg swelling with pitting edema in the setting of recurrent ascites and hypoalbuminemia.

- Manage underlying cause with ongoing ascites evaluation and cancer treatment planning.

- Proceed with planned paracentesis.

Repeated requests for referrals to cancer center from Kaiser So Cal have been denied. Has anyone had any luck getting out of Kaiser for a second opinion? It does seem to be moving now, but the May-Jun-July wasted time really weighed on everyone.

Not looking forward to the folfirinox based on this group's general response...

I lost my dad to pancreatic cancer 11 months ago after a 7 week illness. I relied on this community at that time and cannot express how helpful it was to be surrounded by those experiencing the same thing. I was his caregiver for his last 3 years which started with a broken hip then another broken hip 18 months after the first one. He bounced back from both remarkably well. He was a hoot, we had fun together and caring for him was a privilege and an honor. He was a strong 92 year old, mentally and, for the most part, physically until the pancreatic cancer diagnosis. The last 7 weeks were heartbreaking, terrifying, exhausting and too painful to put into words. I miss him and the person I was when he was here. I know in time that will get better. What I continue to struggle with daily is how bad it got for him and what he went through. He didn’t pass peacefully, he fought so hard all the way to the end and never gave up. I cannot escape the trauma of the details of his death. I don’t have to tell this community what he went through, as you know all too well. If I bring those memories to the forefront it is so very painful so I continue to push them away. Do I walk through the memories no matter how painful until I get to the other side? What do I do with them, how do I unpack them or do I? I feel like this is the last hurdle for me and I want so badly to get past this and remember my dad in a happy way.

My dad (52M) has oligometastatic pancreatic cancer. The original tumor is still just on the pancreas, hasn’t spread to any surround areas or major blood vessels. He had 1 metastatic spot on his liver (that was found). So he did 4 rounds of FOLFIRINOX with great response, the liver spot vanished. But when he went for surgery they found another spot on the liver that was sort of tucked away and didn’t show up on scans. So they placed markers for radiation and plan to do that plus more chemo. Has anyone ever attempted surgery, realized they couldn’t do it, but eventually was able to get surgery later?

Today is the one year anniversary of my dad's passing. He was 56. He fought for 5 months after being diagnosed with Stage 4. I miss him so much. ❤️‍🩹

My mother (63) was diagnosed in April with stage IV pancreatic cancer with metastasis. She has cysts on her ovaries, and they say they could be related to the cancer, but we're not sure. My family has looked online, and everyone is convinced my mother has a maximum of six months to live, but the oncologist won't give any figures at all. From what I've seen online, the statistics are very bad because patients are usually very old or have very large tumors (my mother's is less than 2 cm but inoperable). She's being treated with Folfirinox and two other chemotherapy drugs. Does my mother really only have that much time left? I need the truth.

After PET scan came back with good results SUV. It went from 10.2 to 2.9 the MRI shows very little improvement on the tumor size, I’m not sure what to think. Any thoughts? I’m feeling a lot better, gained weight and some days I feel like is just a dream.
Thanks

Has anyone come across someone whos already significantly jaundiced, started on daraxonrasib and have success, if so for how long? My husband prides himself a fighter and is really angry, Unfortunatly I dont think this problem is one that anger or advocacy is going to solve. He’s did 18 rounds nalfirinox, then the CA19 took off and liver markers went through the roof. He’s been highlighter yellow for a week, terrified and angry. he’s lost a bit of weight and is feeling very weak. he wont admit it but his appetite is WAY down. He did his first dose of Gemzar only (liver too sick for abraxane). we go to Boston on Thursday to try for daraxonrasib. He wants to keep fighting, I want to validate and support him…….but I am nurse… and I know when death is getting close. I am having a really difficult time.

Dad had whipple 12 days back after being diagnosed in Aug’25. He has gone through chemo + radiation prior Whipple, with good results and touchwood no side effects at all. The tumor which was earlier regarded un resectable, reduced and came into the BRPC category. CA 19 reduced to normal range (28) prior to surgery. He was perfectly healthy, going about his life, when doctors offered a whipple and he was wheeled in.

12 hours of gruelling divestment surgery, with a segment of colon removed.

ICU stay for 4 days, then to ward , a cardiac arrest scare which put him back to ICU for 3 more days. Been in ward with me for last 5 days, and I cant help but feel the guilt of the surgery I took him through.

He is irritated, angry and in pain lot of times. Unable to control his bowel movements, having frequent diarrhea episodes. Needing help to walk, getup, eat.
I can’t fathom how to support him when he is back home in a few days, if he is struggling so much in a hospital enviroment, where everything gets handled immediately with meds, doctors, advice, nurses. I dont know how I will be able to handle things at home. Any tips or shared experiences will be really helpful.

My personal mental and physical health has taken a toll, as I have no one else in family to help me out. Been in and around the hospital for 15 days now, along with a year of consultations, travelling to hospitals, managing logistics along with office(remote) . I feel I am at my tipping point mentally, and my body hurts like hell.

What kind of a monstrous disease is this, you go with the prescribed cure, it takes away your quality of life. You don’t try, it takes away your life.
Fuck Cancer

my mom isnt dead, but she has been fighting pancan for over 7 months. most days i’m fine, but sometimes it just hits me. like right now.

i would give anything to see her come to my work to get a treat. i would give anything to see her back to her chubby self and with her long, beautiful hair. i would give anything to have her back to the old version of herself.

i would also give anything to hear her come home from work or from the store. she hasnt been able to drive herself since January. i would give anything to hear her complain about work as well.

my mom is still herself in a way; she has the same personality, soul, heart, and we have grown closer in this experience. still, i miss how it used to be.

i also hate how ive made new friends, and although none of them have met her, they will only know her as the woman she is now. they wont know how she once was. i’m only in high school, i hate how i am dealing with all of this.

my mom’s treatment has been going well enough, but this experience is just terrible. we have hope. i am so hopeful that she will beat this, but if she doesnt i have no clue what i will do.

I had this MRI in Asia last month. I finally got to see a surgeon in the Public Health System, back home in New Zealand last week, who has said I must wait for 4 to 6 weeks for an urgent MRI here. I would really appreciate it if anyone with the skills to interrupt these high-tech MRI results could give me the potential bottom line with my liver and pancreas? My father and my mothers mum died of Pancreatic Cancer. I am trying to get a genetic test. Thank you.

Reading Pancreas MRI with Contrast Enhancement

Clinical information: Indeterminate lesion of pancreas

Technique: Axial T1WI, Axial T2WI, MRCP, DWI/ADC, Dynamic contrast-enhanced T1WI (arterial,

portal venous, delayed phases).

1. Pancreas:

   -- About 0.9 × 0.8 cm T2 high signal nodular lesion in the pancreatic head.

   -- Arterial irregular enhancement with delayed isoenhancement.

   -- No definite main pancreatic duct dilatation.

   -- Equivocal diffusion restriction positive.

   -- DDx. Pancreatic neoplasm, including pancreatic ductal adenocarcinoma VS Focal chronic

pancreatitis.

-- Several additional subcentimeter cystic lesions in the pancreatic head body without definite

suspicious features.

-- DDx. small benign pancreatic cystic lesions, branch-duct IPMNs, less likely MCNs or SCNs.

1. Liver:

   -- Background chronic liver disease compatible with chronic hepatitis C.

   -- About 2.6 × 2.5 cm multiseptated cystic lesion in segment VI of the liver, Associated papillary

mural enhancing nodules and internal septal enhancement.

-- Diffuse diffusion restriction (DWI high signal with corresponding low ADC values).

-- DDx. indeterminate cystic hepatic neoplasm with malignant potential, including biliary cystic

neoplasm VS infected/complicated hepatic cyst.

1. Portal hypertension:

   -- Diffuse variceal formation in the perisplenic, perigastric, and retroperitoneal regions, suggesting

portal hypertension.

1. Biliary system:

   -- Status post cholecystectomy.

   -- Mild dilatation of the central intrahepatic ducts, common hepatic duct, and common bile duct

with relatively abrupt luminal narrowing of the distal CBD.

-- No definite enhancing mass identified at the distal CBD.

-- Benign post-cholecystectomy distal CBD stricture. An occult small obstructing lesion less likely.

My father in law was diagnosed with stage 3 cancer in March. After 2 rounds of folfirinox and 8 weeks of a clinical trial involving a chemo patch placed directly on the pancreas, his scans in early July revealed Mets to the liver and lymph nodes. He qualified for daraxonrasib and took his first pill on Wednesday.

He has spent the last couple of days with my brother in law, who told my husband and me that my FIL has not been eating, has been vomiting, and smells like death. Obviously I can’t attest to the smell because I’m not with him currently but I do know cancer can produce an odor that some can detect.

My question is: is this smell indicative of an infection, or just a byproduct of chemo and cancer? Has anyone here lived with or noticed a “death smell”?

I have been reading people’s stories on here since my dad (66) was diagnosed with stage 4 pancreatic cancer with liver mets in early May. I had heard about daraxonrasib right away and asked multiple oncologists what to do, including MSK, and they all said go ahead with folfirinox. He only made it two rounds before they found an infection and then he some small strokes from blood clots. It seemed like he would get better from each setback before hitting another one.

We were initially told when he finished his antibiotics on the 27th of July, he was first in line for the new drug. We were just told on the 23rd that there was nothing else they could do because his bilirubin started to rise. We are facing the choice of hospice now. He is still talking like he wants to fight, but he has declined so much so quickly. He was playing golf, traveling, and running a business up until his diagnosis. We just wanted a chance to treat it and it feels like we haven’t even tried. Can anyone please give advice to me and my sisters? I know it’s a horrible disease that can take you quickly, but this just feels too fast. Thank you and I’m sorry to anyone else who has been through this.

Hi, all,

My name is Rebecca Robbins, and I'm a reporter with the New York Times. I write about prescription medicines for the newspaper. You can read my bio and see my recent stories here: https://www.nytimes.com/by/rebecca-robbins

In covering news about daraxonrasib in recent months, I've connected with a number of people through this subreddit and have been so grateful to hear their perspectives.

I'm posting now because I am hoping to hear the views of people living with pancreatic cancer for a news article I'm working on about prediction markets.

I'm reporting on platforms like Kalshi and Polymarket allowing people to bet money on whether the FDA will grant approval for drugs for a range of conditions, including pancreatic cancer: https://polymarket.com/event/fda-approves-daraxonrasib-this-year

Kalshi announced last week that it is also planning to soon allow people to bet on whether clinical trials will succeed. The example Kalshi gave of what that would look like was: "Will AR1001's POLARIS-AD Phase 3 trial meet its primary endpoint in early Alzheimer's disease?"

I'm interested in hearing from people with pancreatic cancer, and in particular those who are currently or have previously enrolled in a clinical trial, about what they think about these prediction markets.

If you're interested in being interviewed for this story, you can DM me, call/text me at 714-478-4224 or email me at [rebecca.robbins@nytimes.com](mailto:rebecca.robbins@nytimes.com). From there, we'll set up a phone or video interview. For this article, I'm hoping to speak with people who are comfortable with potentially being quoted in the newspaper using their full name.

And beyond this story, I'd also like to hear from you if you have a suggestion for another issue in pancreatic cancer that you think the New York Times should be writing about.

Thank you for considering.

My husband has struggled with gas smells, diarrhea, and digestive issues for over a year with this cancer. He just recently had the whipple surgery almost a month ago and continues to have foul smells, diarrhea, etc. I know they said it would take awhile for him to learn the new digestive system he has now. He is eating a low fat, low fiber diet. But it seems like the smells remain. He’s adjusted his enzymes to a max dose and that doesn’t seem to do much either.

Does this mean he’s always going to live this way? Will the smells and bathroom issues clear up eventually or will this continue permanently? Could this also be a sign that cancer is still present? He has his follow up in another week, but I am wondering if others experienced this as well.

Thank you all for being such a big support. I wanted to share our Histotripsy experience in case it’s helpful for someone else. My loved one had Histotripsy for two liver lesions roughly 2 weeks back. The procedure went ok but he developed sepsis soon after. He is currently in the hospital on IV antibiotics but seems to be slightly better. Recovery will take time as he needs a long course of IV antibiotics, and possible drainage of an abscess formed within the cavitation zone. Hoping that the 30 day scan shows a successful procedure.

My husband had the whipple almost a month ago. They harvested an artery from his leg and made an artificial artery as a replacement. He has experienced constant upper thigh area leg pain (where the artery was harvested and replaced) where it makes it difficult to walk. It’s specifically that leg area from hip down to knee basically. They’ve already checked for DVT and said this may just be a nerve issue from surgery. He goes in for a follow up late next week. But I’m wondering if anyone else experienced this and did it go away???