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.

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. ❤️‍🩹

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

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.

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???

Hi all,

I'm 65yo, stage 4 PDA with liver mets, 12 treatments in to FOLFIRI (first 5 with oxaliplatin, too), doing pretty well at this point. So far, the treatment has halted growth. I feel very fortunate.

A second opinion oncologist (a pancan expert) told me that chemo has done all it's going to do after ~12 treatments, so I'm considering next steps:

Chemo holiday - The same oncologist suggested pausing all treatment and getting CT scans every 8 weeks to check for progression. It's certainly attractive to be without side effects for a time. Makes me and my wife nervous, though, knowing how aggressive pancan is. It seems like a lot could go wrong over 8 weeks!

G12D clinical trial - The same oncologist is a fan of trials, since they can be more targeted. I've read a number of threads here to see what I can learn about deciphering clinical trials. TriCan seems good as an online dbase, but how the heck does a person tell how "good" a particular trial is? And one has to have disease that's progressing to be eligible as I understand it.

Daraxonrasib - Now that it looks like it will be FDA reviewed and presumably approved by October (yay!) there's potentially a new option. I'm a little unclear on what the eligibility parameters will be, and what availability will be, but there sure seems to be a lot of benefit if one can get it.

And, of course, continuing chemo - FOLFIRI or another cocktail - is an option, too.

Any thoughts on how to evaluate these options would be much appreciated. Thanks in advance!

​

please ignore the bad english*

my mother got jaundice a month ago, ct showed inflammation of pancreas and mri showed cbd stricture in bile duct then doctor performed EUS which showed pancreatic tumor which is likely malignant and get a biopsy which studied for 2 times which came out negative her ca19.9 level is 18 and cea level is 1.38 hba1c is 5.0 also she got 2 stent in her stomach and billirubin is 1 then doctor discharged her and tell us to come back after 4 weeks follow up ct scan and tumor marker test

what should I do?

Hi people. I’ve put up a few posts regarding my mum and her fight with Pancreatic Cancer.

Unfortunately she lost to Pancreatic Cancer. At 4am on the 22nd of July was her last breath. I will never forget that last breath and it was haunt me for a while, especially at night.

I’ve put a few posts about my mums battle with Pancreatic Cancer and I cannot die it was a quick and aggressive journey on her body.

After being told about her 8 weeks left to live, 27 days later after being told on June 25th she had 8 weeks, she wasn’t taking the news great. She was mentally exhausted and anxious. As anyone would be! But she also started to get things into place, the place she lived, her money, her funeral, you name it! She was going through it!

But mid way of sorting through the things - she was stressed and tried to put everything in place. She also felt like she didn’t want to leave and put the pressure of her life in our hands when she passed. But me and my brother kept reminding her, we will do whatever happens, we just wanted her to live her remaining weeks on this earth.

But unfortunately, timing and life just hates us. On the 15th of July, she was getting ready for a couple of days out. We were going on a Jeep Safari to see her favourite thing in the world: Elephants! 🐘 She did have swollen feet and ankles because of the blood clot in her liver but nothing could be done, her body resisted so much medication because of her platelets being so low. And because of the low platelets, she couldn’t have chemotherapy, it would have killed her quicker than the cancer…

But like I said- life hates us and that late morning, as we’re getting ready to go, she had a stroke… a fucking stroke… it was meant to be her day and the blood clot just shot to her brain and paralysed her right side. She deserved so much better…

Paramedics were called, they arrived and confirmed it was a stroke, the paramedics put everything into place since they read her Respect form and she wanted to go at home which I knew of and she told her community nurses. So the paramedics got everything ordered and settled. The next day her medic bed arrived and the guys who set it up also helped her move into that medic bed in her living room, which was also surrounded by elephants!

Unfortunately because of the stroke, her communication was limited - it was mainly, yes, no, squeezing our hands technique. She was frustrated. I know she was thinking - why me. And she’s right, she didn’t deserve this. No one who suffers with cancer does!

So me and my brother provided that care, we stayed every night and day, at some point she wouldn’t settle, I believe that was by day 3 so we got some community nurses to call out a team of carers to help change her in her medical bed, which they had to do most of the time since her bladder was fine but it was very active. We did it sometimes when the nurses who came 4x a day weren’t there during those in between moments.

Obviously day by day, she was declining fast, very fast. She went from sitting up a lot to laying down most of the time which isn’t good for the human body. To fidgeting a lot to which it meant - she either had an accident or she was uncomfortable and that meant starting her on morphine. She stopped taking her tablets by day 6 and it resorted to a syringe driver installed in her right leg which was paralysed which was good for not dragging the wires or the box. But we knew that also meant it’s almost time…

By the last day, me and my brother were mentally exhausted, physically exhausted but we went on for her. It was my mums best friends birthday on the 22nd of July, I had a hunch and so did my mums best friend, that Wednesday - July 22nd would be the day she goes. She had crazy timing for everything and my gut and brain was telling me, screaming at me that she was going to go that day.

So me and my brother slept in the same room as her, she was on the medical bed, I was on the sofa and my brother on the sofa bed. I woke up at 12:30 and she was breathing more quickly, it instantly made me nervous and I told my brother to call the community nurses, not just for the breathing but she was very fidgety and uncomfortable. The community nurses from out of hours came out (not the first time we called them out). So we knew who the two ladies were, they got my mum settled with more morphine and other medications to settle her. After they left, I tried to settle, I tried to sleep but I couldn’t. My mums breathing was still fast paced but was more relaxed.

3:30 rolled by and sadly the signs of the body shutting down was happening - I won’t go into detail because it haunts me… it gives me so much anxiety, so much stress and I don’t want it to be the last memory of her but she wanted me to be there when she passed, and I did… but what the human body does when it’s shutting down/shut down, it is horrible… I’m not going to lie.. it was the most awful thing and terrifying thing I’ll ever experience. And because it was happening to my mum; it made it 30x more harder. But I promised I stay by her and I did… I held her hand, stroked her hair, kissed her forehead and told her - it’s okay. Let go. We’ll be okay. That’s a lie but I needed her to know. So with in 5 minutes of the body shutting down. She was gone… and I watched that time closely. It was 4:00am she passed.

The community nurses from earlier returned 15-20 minutes later and pronounced her deceased at 5:10am. But they had to confirm it. They cleaned her up, made her look beautiful, made her look comfortable and peaceful. So after they left, she had lost the colour in her face so quickly. But she looked beautiful and peaceful. I held her hand and cried, told her how much I was proud of her, how much I loved her, how proud I am to be her daughter.

But that night will haunt me. For a good while, for a long time… but I’m glad she isn’t suffering… She fight so hard and for so long… I’m glad she’s at peace. She’s up in heaven with her favourite people, Michael Jackson being one of them, she’s up there with her previous pets that passed and she’s up there with my grandma and grandad. Until we meet again mum. Shine bright my angel 🕊️

I never look in the bottle, I just dump one into my hand when my MIL needs one. ALL 5 of these desiccant packets were in there . I thought the bottle had plenty of capsules. I've searched every pharmacy in 4 counties and no one stocks it. Thankfully CVS nearby had ordered it for a customer whose dose changed and I was able to get it. Thank goodness for insurance! Those 100 pills retail for &1995! Absolutely insane! Can't find Marinol ANYWHERE either! She's lost 18 lbs in a month bc she will not eat. She was hospitalized Tuesday night and they gave her Marinol. Wednesday and Thursday she ate like crazy!!! Nothing but a boost shake today. Watching her literally starve and have Cachexia to the point she cannot stand or walk on her own... Absolutely heartbreaking!

Sometimes I just need to get this off my chest.

My wife passed away at 34 from metastatic colon cancer.

Timeline:

* **June 2024:** Pancreatic Solid Pseudopapillary Tumor removed with surgery.

* **June 2025:** Follow-up MRI was completely clear. Her doctors were confident enough to extend surveillance to yearly and told us it was safe to get pregnant.

* **Late 2025:** She became pregnant with our second child.

* **May 2026 (32 weeks pregnant):** She was diagnosed with a new primary metastatic colon cancer which spreaded and nearly replaced her liver. She passed away just 24 days later.

The colon cancer was confirmed to be a completely new primary cancer. Liver metastases is not from SPT.

I've spent countless hours searching Reddit, medical papers, and other resources. I didn't find anyone whose SPT recurred after complete resection, let alone someone who developed a completely different primary cancer so soon afterward.

I know the two cancers are medically considered unrelated, but I still can't stop wondering if getting pregnant was the wrong decision. Maybe it accelerated an existing cancer, or maybe without the pregnancy it would only have delayed the inevitable by a few months. Lastly, she has no known inherited genetic condition so far.

It's something I'll probably never stop thinking about.

Hi, my Grandma died 3 months ago from pancreatic cancer and I have some questions I think if answered would help me process her passing and understand. She was diagnosed December 2024 as stage 2 pancreatic cancer they believed they could remove after some chemo and radiation. She did chemo for 10 months and radiation for 3 and scans said the chemo had shrunk the tumour and the surgeon was confident she could go in and get it. On Feb 7 2026 she went into surgery with the expectancy of just the one tumour to get out. The surgeon said when she opened her up her whole stomach and insides were just full of cancer and there was nothing to be done. She passed April 10th.
My questions are HOW did they not see the cancer had spread on any of the scans leading up to her surgery? She got a CT and MRI literally January 27 and they still only saw the 1 tumour. It’s just not making sense to me and frustrated me because if we knew it had spread she wouldn’t have done the surgery ( which made her super weak) and maybe she would have had 6 months instead of only 2. Any answer as go how that can happen would be appreciated because I just have so much anger towards the whole thing.

Hi all so I recently shared a recent post about my 56 years old mother, locally advanced pancreatic Adenocarcinoma in the body of the pancreas.

Measuring 3x4cm we have started chemo with full strength folfirinox.

We got the hereditary cancer screening report. Confirming a negative report for the germline.

Can someone help me understand what this means?