It’s funny, when my mom was first diagnosed 6 weeks ago I avoided this sub like the plague. Im not sure why exactly outside of maybe it made it feel too real? But now after her passing and reading through the comments and testimonies I’ve never really felt more understood.

On July 14 2025 my (31F) mother (64 yo) woke up jaundiced. Prior to that, she was only experiencing some mild acid reflux. Scans of course showed pancreatic cancer with liver and lung Mets with a duodenal blockage. And ERCP was tried and failed so they placed and internal external biliary drain and an internal GJ stent. She was due to start palliative chemo 2 weeks following.

Unfortunately she developed an Infection in her biliary ducts even with meticulous drain care that was initially responsive to oral abx, however, 3 days after her final dose of her 7 day course she developed septic shock, oddly enough in the waiting room for her first round of chemo. This resulted in another IP stay for IV abx. As the doctors explained, any time there are foreign bodies (her drain) where there’s an infection, the infection can get “stuck” and not be totally killed off. We pushed her chemo back 14 days as that’s how long she needed between both IV and oral abx at discharge to finally start chemo.

Things were looking better and she was improving reasonably quickly and we were discharged home with hope, however, 1.5 days after being home, she nearly collapsed in mine and my dads arms while we were assisting her to the bathroom. Back to the ER we went, this time diagnosed with a blood clot in her lungs. It was at this point we had a very really conversation as a family together with her oncologist that she decided to transition to hospice/ comfort measures only.

6 days after being admitted for the 3rd time, and 6 weeks and 1 day after her diagnosis she was gone.

While there are a slew of emotions and the last 6 weeks have felt like a fever dream, I can say in her final days we kept her comfortable and out of pain and that is all that she wanted. There are moments during this experience I worry I did something wrong, or there’s something I could have done better as her primary care taker and I try to quiet those thoughts. But I do hold on to keeping her out of pain and making those decisions for her when she couldn’t, even if it was extremely difficult to continue to increase the dosages and frequency of her pain and anxiety medications at the very end. I feel very lucky to have developed such trusting relationships with her nurses, doctors and entire care team that I could give full trust to their recommendations.

This disease is absolutely horrific and it has shattered my family. But reading this sub has helped me feel not so alone and misunderstood in the agony. Sending love to all, give yourself grace, feel the sun on your skin and make sure you’re drinking water. Peace and love ❤️

Hi, I am from the Philippines. My mom was diagnosed with pancreatic cancer in 2023 it was already in stage 4 as the doctor told us. in 2024 She underwent chemotherapy, after that there was no sign that the tumor was getting smaller. Hence, she underwent 28 radiation therapy she was able to complete her Radiation in November 2024.

After the radiation she underwent a CT scan, the result was that the tumor was slightly got smaller, and her CA 19-19 was at 70. However, after her follow up check up this August of 2025 her CA 19-19 significantly increased to 241. Now, her doctor recommended for her to undergo chemotherapy again.

It was just saddening we thought that her health will continue to improve already. Because after her radiation her appetite is getting back to normal and she started gaining some weight and she was not having those episode of muscle numbness (my mon never felt pain in her stomach, just muscle numbness on her entire body).

Now, I am wondering whether my mom would able to survive her second chemotherapy, I am afraid of the effect of it to my mom, the nausea, the vomiting, and the feeling of being week after the session.

I know she is more stronger now than the first time she underwent her first chemotherapy. But my mom is already 74. I still want to spoil her as much as I can. I want her to experience life without stress, with her age she should be just enjoying her life and not to battle with it.

Hi, my husband will have his second chemo treatment next week. He is on the Prism trial with possible quemliclustat + nab-paclitaxel and gemcitabine. I’ve read here that cold therapy in the form of gloves and boots can direct the chemo away from extremities to prevent neuropathy. I’m surprised at a center like Moores at UCSD doesn’t offer it! I’m wondering how I’m going to manage the logistics such as keeping the stuff frozen, I wonder if it’s ok to ask the infusion center to store them for us? Any tips or experiences? Thanks!

Hi everyone, my mom (61F, non-smoker, no drinking,no family history) was recently diagnosed with Stage IV pancreatic cancer (adenocarcinoma, grade II).

Medical History: - removal of uterus due to teratoma - high blood pressure

Primary tumour: Located in the tail of the pancreas, measuring about 15 × 12 mm. No vascular involvement seen.

Spread: Confirmed cancer cells in the neck (several enlarged FDG avid supraclavicular lymph node are seen, measuring 13x7mm, confirmed metastatic carcinoma on biopsy). There are also small nodules on the lungs that doctors are keeping an eye on (non-FDG avid according to PET scan).

Markers: CA19-9 went from ~800 to ~1000 within 2 weeks before chemo started.

She just had her port inserted and completed her first round of chemotherapy this week (just FOLFIRINOX (5-FU, Irinotecan, Oxaliplatin) every 2 weeks, with supportive meds to manage side effects (for bowel movement).

Chemo is planned to take place every 2 weeks, planned for 8 cycles. A PET scan is planned after 2–3 rounds to evaluate response.

Right now, her symptoms are relatively mild — some bearable stomach discomfort once in a while, nausea, and diarrhoea after the first chemo, but otherwise she’s still able to eat (although doesn’t really have appetite) and feels alright. She doesn’t have jaundice or anything.

The oncologist seems very confident about treatment, but no one is giving us an exact life expectancy. I’m graduating this December and hope my mom can be there… I also wish she can live long enough to see me get married and have kids.

We’re staying hopeful, but also want to be prepared. Do share your thoughts and experiences! We are based in Kuala Lumpur, Malaysia. My whole family is supporting my mom.

My beautiful wife just passed from this horrible disease If anyone in this group needs Creon I would love to share it with those who need it. DM me First come first served I’m in the States.

Any insight on interpreting the genetic test results performed on a biopsy sample from.my Moms tumor would be welcome.

I know it is a kras g12d mutation, but beyond that it isn't obvious what is dignificant or not.

This was done by the Caris testing lab. They were excellent to work with.

Hi everyone, MIL has some Mets to her liver found a few months ago, and was originally diagnosed last November. She has been through both top line chemos and neither showed improvement. She got an MRI and CT scan last week and has more tests ahead to assess if she can be accepted into a clinical trial. She has a stomach stent and bile drain. Starting about a week/ week and a half ago she cannot eat solid foods anymore and at this point even has trouble keeping liquids down. Her body weight is so low and she had a panic attack yesterday. Her team says she should just try to eat small bits in an effort to try to retain some calories but she can’t even hold down soup. She got IV fluids today. We are wondering why this is happening and if it could have to do with cancer progression? but if anyone also has ideas of how to help get her body weight up it would be appreciated. Her pain in her back and ribs have been severe in the last few weeks too. She is sick of protein shakes and being stubborn but we are trying. I’m frustrated her team isn’t doing more to help her. Thank you in advance

Heartbreaking news at moffitt Thursday. My mom’s tumor is wrapped around the vein and artery. It is not resectable. Our only options are kill it or keep it stable. Trying to stay positive but at this time I’m thinking it’s not IF I lose her but WHEN. She’s only 59 and I’m just not ready to lose her. She is my best friend, my everything.

Our only positives: -CA19-9 remains very low (in the 50s) -Tumor seems to have some dead cells in it according to CT -She will qualify for a lot more clinical trials -metastasis and localized -young and healthy outside of the cancer

I got diagnosed 12 aug, 2025. Pancreatic cancer. Got jaundice, yellow eyes and wnt to emergency. Were they diagnosed it. 55 yr. Male. In god condition. No alkohol. No smoking. They did endoskopi to get rid of the jaundice. Took a sample from the tumor and will know more next week, when I meet with the specialist.

Tumor is wrapped around the artery and vein. Non operable. The tumor has not spread, yet.

The treatment suggested is 3 months, chemo. And then another check to se if its operable/if surgery.

Doing low carb diet, lchf. Anti parasite treatment. I am soooo tired. And still itching from the jaundice

Loosing hope, slowly. Due to my CA19-9 is at 900!!! Thats insane!

Is it over?

Hi all, my dad (58) was recently diagnosed with stage IV pancreatic adenocarcinoma. It was initially suspected to be an appendiceal mucocele, but during surgery they found peritoneal nodules. Long story short, after several more exam, they said primary likely pancreas given there's mass in the pancreas. Now the problems are:

1. He started his first cycle of FOLFIRINOX two weeks ago. After the oxaliplatin infusion, he suddenly developed severe crushing chest pain and desaturated (SpO₂ 85% on room air, 90% on NRBM). He was transferred to ICU for a week, where they found and drained ~1.2L of pleural effusion from both lungs. Since then, he’s been very traumatized by the chemo experience. It’s taken a big toll—he’s now frail, has no appetite, and vomited today. And he hasn’t even received the full regimen yet.

The oncology team had an MDT discussion. They think the episode might have been due to a malpositioned chemoport and are suggesting trying the next infusion peripherally, at a slower rate. I’ve asked several of my own colleagues (I’m a junior oncology fellow myself), but no one seems to have encountered similar reaction like this, and my consultants suggested re-trialling with desensitisation.

1. His laparoscopy site initially looked like un-healed wound / infected wound, now it's been a month the wound is still not closing with occasional pus. We're thinking it could be related to the cancer.

I’m finding it really hard to separate being a doctor from being a daughter right now. Seeing him go from being well to this state after just one drug has been overwhelming.

Has anyone here had experience with something similar—either with oxaliplatin reactions, chemoport complications, or desensitisation protocols in this context? I'm sharing & asking this as a caregiver, I believe many of you have seen and experienced far more than I have, and your insights would really mean a lot to me :(

thank you.

Mom was diagnosed with locally advanced pancreatic cancer in May. The tumor involves an artery, but thankfully there are no signs of metastasis. Since her diagnosis, she's had a stent implanted and has been on 5-FU for several cycles. Her treatment has been going really well—her CA 19-9 dropped from 370 to 18, and recent CT scans show no tumor growth. She stopped needing pain medication after the cycle 2.

About a week ago, she went to the ER with stomach pain. Her ALP, ALT, and AST numbers were elevated, so they did a stent replacement. Since the surgery, she's been in severe pain, much worse than the pain she experienced from the tumor itself. Her recent blood work shows her liver numbers are trending back to normal, and pancreatitis has been ruled out. We're trying to figure out what could be causing this level of pain and if it's a normal part of the recovery process after a stent replacement. Has anyone here experienced similar severe pain after a biliary stent replacement? We're lost (probably the doctors too) and appreciate any insights or shared experiences.

Since I had 1st round of this chemotherapy, my face has a little swelling and has little moon face, except fatigue. Any of you have similar symptoms?

It’s been seven years since my dad passed. Not a single day has passed where I don’t shed a tear when I think of him. His journey from a Stage IV diagnosis to his passing was quick, and I helped my mom in his caregiving. It was pain but there was joyful moments in the thick of it. To this day I remain grateful I could care for him as I did. One day seven years ago I shared a special moment with him and my brother. It was simple. It was after work and we made our daily visit and we were laughing and crying together, holding his hand and sharing memories in his medical bed. My mom was in another room preparing his medicines. He was lucid, and he was connected which at the end stage is fleeting. Well, once I got home I added that moment to my calendar. I was in my late 30s back then and knew over time as my memory fades in memories of him that I would likely forget such a special moment. That was seven years ago today. He passed just 11 days later. Every year since, I get this reminder and it brings me joy.

For everyone on here in the thick of it, I just wanted to extend my support from afar, whether it’s in your active caregiving or in your grief. Strength in numbers. 💜🎗️

My dad was diagnosed with stage 4 a month ago. We're struggling to find food he feels like eating. The combo of pain when digesting, feeling totally full, has reduced his intake to <1000 calories/day (optimistically). We just keep bringing options and softly offering, or just put them in the fridge hoping he'll feel like a bite or two later.

In the last week he's been able to eat: orange juice, cinnamon rolls, soft cookies, pasta, white sauce, eggs (just stopped eating), peaches & cream, blackberries, raspberries, tomatoes, homemade bread/rolls, yogurt, saltines, ensure.

Can you please suggest things that are more appetizing, easier to digest? I know it'll likely only get worse. No wrong answers, I just want to hear

My best friend was diagnosed with stage 4 pancan on Feb 14th of this year. They have her on Chemo along with the NYU trial of Gemcitabine and Nab-paclitaxel in Patients with Previously Untreated Metastatic Adenocarcinoma of the Pancreas. There were other trials available but the DR is with NYU so he enrolled her into his study.

She is 57, not in any pain (tired sometimes) and pretty active in general. All in all quite a trooper! She was a rockstar at first, responding amazingly to the treatment. The tumor shrank a small amount and her antigen level went from 1200 to about 100. As of the last CT, the tumor is not shrinking but remaining steady and the antigen seems to have leveled off. This makes me think perhaps a change in treatment is in order.

They did a biomarker test in March. Can anyone suggest any trials or a different course of action. Screen shots (out of order) attached.

Any guidance is appreciated. Thank you

I got diagnosed 12 aug, 2025. Pancreatic cancer. Got jaundice, yellow eyes and wnt to emergency. Were they diagnosed it. 55 yr. Male. In god condition. No alkohol. No smoking. They did endoskopi to get rid of the jaundice. Took a sample and will know more next week, when I meet with the specialist. Tumor is wrapped around the artery and vein. Non operable. The tumor has not spread, yet. The treatment suggested is 3 months, chemo. And then another check to se if its operable/if surgery. Doing low carb diet, lchf. Anti parasite treatment. I am soooo tired. And still itching from the jaundice

In some modern models of emotion, we first notice feelings in our bodies, then interpret them in light of our social context, values, and the situation.

I’ve come to see emotion as a kind of thinking—especially in the moments when we are not in control, when rational understanding falls short, when everything is embedded in relationships with people and with God, and when the stakes are high.

When I was diagnosed with pancreatic cancer, that process changed dramatically. My body was suddenly full of strange and unpredictable sensations. Emotions surfaced in ways I had never felt before, and I often struggled to know what they meant. My relationships changed. My values and beliefs deepened—and sometimes changed. And the situation was, of course, unlike anything I had ever faced.

I found this disorienting. It was hard to understand what I felt, or how to let those feelings guide my path.

Have others felt something similar? How have you navigated it?

My mom has been on 1.5mg fast acting hydromorphone every 4 hours and 3mg long acting hydromorphone every 12 hours. If she goes higher than this dose then the side affects are too much for her and causes too much weakness and shortness of breath. Her pain is not being managed well and has bad unbearable pains daily. What is the next step to best manage her pain? She is on comfort care as she is not doing anymore treatment. She did folfirnox for almost 10 months and radiation over 6 weeks ago but it seems it didn't help as she is in more pain now. If anyone can please let me know what is the next best thing that will actually work and help as my mom is considering medically assisted death if the pain is not being managed well. We have an appointment with the palliative team next week to talk about a pain pump possibly.

My husband passed 8/1/25 of pancreatic cancer spread to his liver, bone, lungs. He was diagnosed 5/8/25 his oncologist said she could get him 2-5 years of life. He started biweekly chemo treatments the end of May. After his second treatment he came down with horrible thrush in his mouth, esophagus and most likely his stomach. He wasn't able to eat or drink and needed to be hospitalized for hydration and they treated the thrush through his IV. He lost his voice and it never came back. His lack of nutrition made him very weak. He lost all his muscle in his legs and was unable to stand. After 3 weeks in the hospital, the thrush was gone and he went to a rehab hospital to start to build his strength back. His chemo treatments stopped until he was strong enough to withstand them. He was scheduled to be in the rehab hospital for 2 weeks, but he was going downhill. He never regained his appetite and his strength never came back. After one week in rehab, and it is a very good rehab hospital, he went downhill fast and he wanted to come home. Hospice made it happen immediately. I got him home, he was awake for about an hour and then went to sleep. The hospice nurse "liberated" the morphine we put in his mouth as he slept. She said he was "transitioning". We were told to increase the amount of morphine if his face looks grimaced. He never regained consciousness. He was home on a Monday, went to sleep, and passed Friday morning. く It happened so fast and after a month, it doesn’t seem real.

My brother has PDAC. He also has three possible mets on his liver which his doctors did not want to biopsy - they felt they were metastases and didn't want to go further. He's considering attacking those mets with Y90 radio embolization (SIRT) and I was wondering whether the angiogram would enable us to definitively prove they're metastases or not?

I just started thinking about this after my scan results and given that they were positive I’m hopeful I’ve got at least 2 years left.

i have term and insurance through work that will set my family up (mortgage paid and many years of bills with no additional income). My wife is going to have to watch her spending but staying reasonable she should easily be set up for a decade or more. On top of that the social security payments for my wife and young son will be about $70k per year for the next several years.

What came to mind was doing something specifically for the kids. I know no one will touch us (PC patients) with our diagnosis but AARP has a whole life, guarantee issue, with no medical questions that’s about $60 a month for $10k in coverage. There is a 2 year period before it kicks in but if you pass befor then the beneficiary’s get what you’ve paid + 10% or so a really good savings account.

I know my wife will take care of the kids but I wanted to give them a little extra to do whatever they want with, take some time off work? Take a trip, etc.

Has anyone else done this or have any advice?

Anyone else having trouble even seeing if clinical trials are truly enrolling. When I call through multiple lines of office staff getting rerouted until I sometimes get a knowledgeable coordinator but typically get a number straight to voicemail.

I’ve heard “You need to be register as a patient to speak with a nurse and see if trials are enrolling” which seems ludicrous given the variety of trials/locations across the country.

The lack of updates on clinicaltrials.gov is true enrollment is criminal imo.

Can anyone help navigate this mess.

After 2 1/2 months maintenance drug, CA 19-9 slowly up, and plus after 4 rounds of Gemzar/Cisplatine failed, it developed a small to moderate amount of ascites. Since I had low grade fever and white blood cells high, my oncologist prescribed an antibiotic. After antibiotics taken, the ascites stayed and did not getting worse. The morning weight stayed about same. My appetite is okay and still walk 2000-4000 steps daily. I have no liver metastasis and liver function and numbers are good. The day before yesterday, I started 1st round of Irinotecan/Fluorouracil. Any of you have the similar situation?

Hi, everyone! Time for our monthly check-in for those who are diagnosed with pancreatic cancer or their caregivers. You can describe how you're doing (hopefully well) and how things are going well for you (feel free to include personal wins that aren't cancer-related, if you like).

My apologies that this thread is a bit early, but I will be away on the first, so I'm doing it now. :)

My personal "check-in" (with big news!) will be in a comment below.

Zev