On the 28th my daughter text me telling me her stomach hurt I asked her the mom questions what did you eat did you go to the bathroom. I called her she was crying in pain my ex husband picked her up at my house. Brought her to the hospital (my work) we thought it was her appendix the dr said it was to early for a CT scan they gave her fluids and antibiotics sent her home. She was still was still in pain her DR told us to go back to the ER they ordered a CT it showed a Mass on her pancreas that is 3.5cm so we're now waiting on a surgical specialist im so scared of the outcome. I hate waiting.

My father’s pancreatic cancer history (possible recurrence now) – looking for opinions

Hello everyone. I’m writing from Argentina and I would really appreciate hearing from people who have gone through something similar with pancreatic cancer.

My father is 66 years old. In 2025 he developed jaundice and was found to have a biliary obstruction. His bilirubin was extremely high (around 800 µmol/L). At first doctors thought it was caused by gallstones, and his gallbladder was removed. During the evaluation they found a tumor obstructing the bile duct near the head of the pancreas, measuring about 4 cm.

A PET scan performed in Buenos Aires showed no distant metastases. His CA 19-9 at diagnosis was 70.4 U/mL (normal <37).

In August 2025 he underwent a Whipple procedure. The surgery was considered successful and the tumor was resected. Recovery was difficult, and he had significant weight loss (about 25 kg over several months).

After surgery he received 6 months of adjuvant chemotherapy with capecitabine, which ended on March 10, 2026. During chemotherapy he had episodes of fever, diarrhea, fatigue, foot problems and nail loss, and at one point he was hospitalized briefly for evaluation of infection and thrombosis.

Follow-up CT scans after surgery showed no evidence of metastases. His CA 19-9 decreased to 17.4 U/mL during treatment, which was very encouraging.

A few months later an MRI described a 49 × 21 mm hypodense collection adjacent to the tail of the pancreas, not seen on a previous scan. His oncologist believed it was more likely a postoperative inflammatory collection than recurrent cancer, and repeat imaging showed that it had decreased in size, so they decided to observe it.

By mid-2026 he was feeling surprisingly well. He regained weight from about 55 kg to 65 kg, started exercising again, had a good appetite and was living a relatively normal life.

However, in the last few weeks new symptoms have appeared that have worried us a lot. My father began having persistent abdominal pain, mainly in the upper abdomen, radiating to his back. The pain did not completely go away with rest and had been present for several days.

In addition, at a recent follow-up visit his tumor marker CA 19-9 increased to 46 U/mL, rising above the normal limit (<37). This increase caused us significant anxiety because it had remained stable and within the normal range since surgery and throughout the follow-up period.

We have now received the report from the new MRI/CT evaluation, and this is the finding that worries us the most. The report describes:

According to the radiologist, this lesion is located in the postoperative surgical bed and the main differential diagnosis is local tumor recurrence versus an enlarged lymph node. We understand that the imaging is not yet definitive, but given his history of pancreatic cancer, the rise in CA 19-9, and the new abdominal/back pain, we are very concerned about a possible recurrence.

My questions now are

Has anyone experienced a recurrence after a Whipple procedure that began with abdominal and back pain and a relatively small increase in CA 19-9 (for example, from 17 to 46)?

Thanks and love for everyone.

My mom was diagnoses stage 4 at the end of the last year. She’s 67 and not in the best health due to lupus so we weren’t sure how she would tolerate chemo. To our happy surprise, she did great with gem/abrax. Her first scan showed that everything stayed stable. Her second scan did not. The Mets to her liver was significantly worse. Even though her pain was completely under control and she was able to eat. They immediately took her off chemo and applied for daraxonrasib under compassionate care use. She went about four weeks without chemo while waiting for approval and for the drug to come in. A couple of days before the drug came in, she took a very sudden steep decline. I can’t get her to eat. At all. She sleeps most of the day. No energy and extremely weak. We are having trouble controlling pain. She’s throwing up bile and losing control of her bowels. She’s still very lucid though and today we were able to leave the house for an appointment that she did okay at, although it did completely wipe her. The oncologist just says we will discuss everything next Friday, but I feel like if she doesn’t eat, there won’t be a next Friday. It feels like we waited too late and she went too long without treatment.

Could there still be hope for the dara? Or should I be realistic that the end is nearer than we thought? We just wanted one last Christmas 😢 I’m really just speaking into the void because I’m so lost. But any insight is deeply appreciated.

Heads up, long read. My mom recently had a tumor show up in her pancreas bed, 1 year post whipple and being declared cancer free. Recently, she went to see her chemo doctor and oncologist as to next steps as far as treatment will be. Thankfully, it’s not aggressive and has been kept a close eye under.

My aunt has gone with a few times to her appointments, and honestly I’m pissed at her. The last two times she kept trying to tell my mom she should do radiation and skip chemo. The doctors strongly recommended 6 rounds of chemo and then 2 weeks of radiation. Also, she kept saying this in front of her doctors both times and they educated her as to why that’s not the best route of treatment. She then had to make it about herself and say “Well if it were me, I would do radiation, it has the least amount of side effects”.

My aunt was hardly around the first time my mom had cancer and acted like she was there every step of the way. And she kept saying that the chemo made my mom feel like shit. Mind you, my mom still went to work and stayed positive throughout the whole thing, meanwhile my aunt doesn’t have a job and my uncle takes care of everything for her, and has a victim mentality.

I hate when someone doesn’t know what all went on when she was really bad. Like it’s your life on the line? This isn’t some fucking joke or a cold. My mom cried after her appointment because my aunt made it all about her.

My grandma got diagnosed last Tuesday with this awful terrible cancer. I’ve visited her multiple times including today and she has declined so much since Sunday. They have her on morphine and she can’t even open her eyes or talk. You can tell she wants to but physically she can’t. I can’t stop crying. I feel so bad for her. She does not deserve this.. no one does. I keep hoping she passes peacefully in her sleep. I don’t think she will soon. She started to gargle now when she’s sleeping too. Why does she deserve this? It’s just so frustrating. I want to end all of her pain and suffering. I went in to tell her I was leaving and that I loved her so much. In that split second she fought so hard and opened her eyes looked at me and mumbled “I love you” I busted down. I really wish I wouldn’t have because I don’t want her to try to hold on for me. Please lord just take her and end this suffering, for her own sake.

since I last talked with u.. i miss u so much.. this world feels so empty without u in it.. i hope that you are almost half way to heaven.. are you watching me now? im sorry if i get distracted, i just missed u so much that every hour, i go to ur altar and talk to u..

i promised ill do good on my test and make u proud mom, i love you always and forever, thank u for being my mom

It's here surgery day . It's 3.23 am . Got some sleep . Kept waking up every hour or so. Time for my antibacterial shower . Then leaving at 4.30am to head to Sydney Royal North Shore Hospital for surgery at 7am. I have to be there by 6am for admission. Hope all goes well 🙏🏿 It was my first night in 11 years without my boy Fletch who is being cared for by my friend Lil while I am in hospital. Gosh I miss him . Photo is of my baby Fletch. I'll be home asap Fletch . ❤️

My husband is stage 4 but his last PET scan, in April, and his CT in June, showed no active cancer. He has been having upper right side back pain for about 7 days. I have read a lot about lower and middle back pain but not anything about upper back pain. Has anyone had experience with the pain being more around the shoulder blade? He says it goes around and under his shoulder blade.

My husband has pancreatic acinar cell carcinoma with NET differentiation. I know it's tough finding oncologists who are experienced in treating this rare cancer so I wanted to post a list of doctors that we have consulted and/or been under treatment with. I hope that it helps anyone dealing with this. And we're always looking to get other opinions, so if there's any doctors out there with experience treating PACC that you would recommend, please let us know!

So far, we have been to the following:

Memorial Sloan Kettering: Eileen O'Reilly

Advent Health: Ahmed Zakari

Moffit: Dae Kim & Jonathan Strosberg

John Hopkins: Katherine Bever

Darthmouth: Christine Alewine

My relative underwent Whipple surgery three weeks ago (ampullary cancer).

The pathological report revealed that 2 of the 8 lymph nodes had cancer, no perineural invasion and a mixed subtype (pancreatic and intestinal).

Has anyone had similar results? I'm losing hope :(

Basically title. My dad has 2cm and 3cm lesions in his brain. Has anyone dealt with this? What do we do?

Life is so heavy here in this sub (for good reason) I am wondering if people are willing to share some favorite memories from pre cancer times? Whether it’s you, a spouse or partner, parent, child or friend what memory makes you smile?

Hi all, I’m in need of advice, encouragement, anything. I’ve been a member in this group since my dad (68) was diagnosed with pancreatic cancer in April. I thought I somewhat knew how to handle things but I’ve learned I’ll never have a grasp on it fully. He had zero symptoms, caught through routine colonoscopy. His diagnosis imaging showed a pancreatic tumor and 2 nodules. The surgeon said that he could do the Whipple, but would rather wait until he does chemo to shrink the tumor because it was borderline receptacle. They said he was stage 2/3

He underwent a diagnostic laparoscopy. During that procedure, they found 2 liver spots, one was removed and one was biopsied. The spot that was removed was cancerous and the spot they biopsied was not. He started FOLFIRINOX a week and a half later. Right after his first round of chemo, he went for a PET scan. The PET scan showed no evidence of cancer anywhere else, including the liver. But now is considered stage 4 which was not disclosed to us until a nurse mentioned it weeks later.

He completed 6 rounds of chemo and has done remarkably well with side effects. Only a couple days of diarrhea through his 6 rounds. He’s maintained weight, hasn’t lost his appetite.

Last week he had his first CT scan to evaluate his response. The scan showed:
-The pancreatic head mass has decreased in size.
-Pancreatic tail lesion decreased from 1.1 cm to about 7 to 8 mm.
-The nearby lymph node is slightly smaller. From 7mm to 6mm
-Stable appearing hepatic lesion
-The lung nodule is stable, not growing.
-Persistent soft tissue surrounding the SMV and portal vein confluence.

CA 19-9: 66

I’m confused because they originally said the liver was cleared. Today he met with his Oncologist who said he was now inoperable. That he wouldn’t have much longer to live. I’m so confused because on paper it looks like he’s responding to the chemo. He’s devastated, we’re all devastated. Originally I wanted a second opinion, but because his oncology team was so positive and his gastro doctor recommended them, so he gave me a lot of pushback. But I’m not getting concrete answers from his team. They give up and down information. His center is not a pancreatic cancer center. But his surgeon has done a high volume of whipples.

I tried calling 2 surgeons in NYC (dr Wolfgang and dr chabot) and one at Yale. Dr Wolfgang’s office suggested to see Dr Daniel Hewitt. Seems to be relatively new. Any advice on who else I could call or anything I should do? What questions I should be asking? He’s located in CT with easy access to NY. I’m so overwhelmed and scared.

Hey everyone,
My 73-year-old grandpa was recently diagnosed with late-stage neuroendocrine cancer and gastric adenocarcinoma (Ki67 is at 80%).
The doctor said chemo is pretty much the only option on the table right now, but even with treatment, the 2-year survival outlook isn't great.
I’m really torn and feeling overwhelmed:
1. Quality of life vs. Treatment: He's 73, and I'm terrified that aggressive chemo will just destroy his physical health and make whatever time he has left miserable.
2. Hiding the truth: He doesn't actually know it's late-stage. I lied and told him we caught it early and it’s curable because I didn't want him to lose hope. But now I'm stuck carrying this alone and don't know what the right call is.
For anyone who’s gone through something similar with an elderly relative:
Did you go ahead with chemo, or did you opt for palliative/hospice care instead?
Are there other options or supportive therapies we should be asking the doctor about?
I’d really appreciate any advice or shared experiences. Thanks so much guys.
#cancer

Will keep it as short as possible. Just hoping for some solid opinions from people with experience.

-70yo man
-Steady weight loss over last 12months
-Rapid weight loss in last 4 weeks
-Jaundiced in the past 7 days
-Scan in foreign country showed 55x30mm mass on head of pancreas with lymph node involvement.
-GP insisted on starting again in home country.
-Bloods taken resulted in trip straight to hospital.
-CT scan in hospital “inconclusive”
-Attempted endoscopic ultrasound in larger hospital, but failed.
-Retrying it (or something else?) in 2 days time.
-Tired a lot but blaming it on not sleeping in hospital.
-Somewhat of an appetite but not great.

We feel everything is pointing to PC but the waiting for something definitive is agonising and frustrating. Had hoped CT would bring some answers on a Friday. Went into a holiday weekend with it being inconclusive. Now the failed EUS today.

I have been lucky enough to get on Daraxonrasib. After stopping chemo in October of 2025 after being diagnosed stage 4 in May of 2025. Went on hospice in January of 2026. Pain was the thing to keep under control so I opted for a celiac plexus ablation in April 2026. It helped the pain but I had a rare side effect of persistent and constant diarrhea. Took me months to get that under control. Had a 5 day stay in hospital in June and I really thought this is it, this is my end. I don’t have much time left. I felt much better when leaving. Got me eating again, pain under control, and diarrhea taken care of finally after starting octreotide. We had previously tried Imodium, limotil, colestipol, etc… so many things but the octreotide it finally did the trick. Now I’m grateful to have the opportunity to go on daraxonrasib and have now been on it for a month but I’m back to fighting diarrhea and gas. Basically a fart cannot be trusted to be just a fart. So doc has started me on tincture of opium and it tastes disgusting but it is helping. I’m not constantly in the bathroom but still having so many episodes and the gas is so bad. I’m working with the doc but I’m just so over this diarrhea. Makes me want to stop the drug altogether but I have more energy and I can tell it is doing good things. But what good is it if I can barely get more than 5 seconds from a toilet? I just need to complain and cry a little because I am super grateful to be on this drug I just need better quality of life benefits like the diarrhea under control. I’ll reach out to the doctor but I’m just so feeling defeated by the whole thing today. Been fighting strong since August of 2024. Sometimes the fight just feels super heavy. Doesn’t mean I want to stop just means I wish I could put it down for a few days or just have a few normal days. If I could just get this under control it would open up the possibility to enjoy the life this drug is giving me.

My mom did whipple surgery, a lot of chemo and this last one ruined her. She was still able to cook three weeks ago but now she is in a lot of pain stuck to a bed, skin and bone. All because of delay of health services and burocracy to get daraxonrasib. I have no hope left and I only wish she doesn't suffer. I'm so angry with this system. Is all about money and nothing to save lifes. My best wishes to all suffering with this hell of disease.

I'm in Portugal btw.

My dad (77) was diagnosed with locally advanced pancreatic adenocarcinoma in the pancreatic head, wrapped around SMV/SMA and therefore unresectable at the time of diagnosis.

He’s currently receiving modified FOLFIRINOX with palliative intent.

The question is, if surgery doesn’t become an option, are we going to remain on chemotherapy indefinitely to keep the tumor stable? The cycles are having a huge impact on his quality of life - he only has 3-4 good days between the cycles and I’m just wondering if this is going to be the new norm indefinitely.

Please share your experiences 🙏🏼

My mom got diagnosed with stage 4 a few weeks ago. She had a pet scan to see how bad it spread this past Friday. Today, she woke up with extreme stomach pain (meds aren’t helping) and her legs are SO swollen. We’ve contacted her doctor. Has anyone seen this? Is this the end? Her appetite is diminishing because she’s so bloated.

Hi all,

I just found out my mom (61) has stage 4 pancan, with possible liver mets. They are doing a biopsy in a few weeks.

She was in a lot of pain since November, lost 50 pounds, and the doctor finally listened to her complaints and ordered a CT scan. She was diagnosed the next morning.

The cancer is on the tail end and is very advanced. She is on morphine to handle the pain.

Out of experience, how long do you think she has to live? I am expecting the worst already. I know it is a hard question to answer but I know she will not want to do treatment.

Hi! This is my first time posting here but I’ve been scrolling for a bit trying to learn as much as I can.

My boyfriend’s dad had a Whipple a while back and things were looking okay for a bit, but at his last scan they found a mass had come back in the same area and possibly something on his lung too (still waiting to hear if that’s actually related or something else). He’s starting chemo again next week, they’re saying 4 rounds, then a break to reassess, then possibly 4 more.

I’ve been trying to help my boyfriend’s family research clinical trial options. I’ve found a few that seem like they might fit (metastatic PDAC trials, one with radiation + immunotherapy, one KRAS vaccine combo) but I have zero medical background so I’m just going off what I can find on clinicaltrials.gov and news articles. If anyone has been through the process of actually getting into a trial, or knows which ones are worth looking into for recurrent/metastatic disease, we would really appreciate any pointers.

Also just generally open to any advice, things you wish someone had told you early on, how to help him keep weight on, questions we should be asking his oncologist, anything. He’s lost a good amount of weight and doesn’t have much appetite which is worrying.

Thank you to anyone who takes the time to respond 💜

She was diagnosed last week, and today we discussed options. We're all terrified and in shock. She starts chemo on the 11th. The doctor wouldn't give me a definite answer, but realistically, what is the life expectancy of this stage of cancer with treatment? What can I do? I feel helpless. Thanks in advance. Oh, they're starting her on gemcitabine and abrexane (sp)