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?

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. 💜🎗️

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.

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

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.

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 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?

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

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?

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.

For those who have gotten the procedure, what are some things you wish someone would’ve told you in advance? What are some ways you prepared for the procedure (education, exercise, eating habits, etc)? What are some ways you wish you would’ve prepared for the procedure? I would love to hear everyone’s mistakes, successes, and everything in between! Thank you

Hi everyone! My mother has borderline respectable stage 1 pancreatic adenocarcinoma. She had her first modified FOLFIRINOX infusion on Tuesday and is tolerating it well.

In my search for information I learned about the potential positive impact of supplemental high-dose IV vitamin C. It seems like something worth pursuing.

When I asked the Oncologist managing her care about it she said “Yeah, we can do that”. I later discovered that it’s not a service offered at the infusion center where my mom is receiving treatment so I’m not exactly sure what the Dr meant by that. However, there is a local DripBar that does house calls, so we could pursue that option.

I sent a message to our other Oncology team from the institution that will be performing the surgery asking their thoughts on supplemental HIVC, and they replied “we don’t usually recommend it.” I’m assuming because the research surrounding it is limited.

The DripBar requires certain specific bloodwork and a consultation with their doctor to determine if someone is eligible for the infusion.

I’m currently planning on going ahead and getting the labs ordered and having the consultation, but in the meantime I was hoping this lovely community could share their knowledge and experiences with me.

Thank you, and I truly hope you are all doing as well as you can be.

My mom was diagnosed with stage 4 pancreatic cancer in mid june and it spread to her liver in a little over a month. She was very young, only 44 and I myself am 17. She did 3 rounds of chemo and they weren’t effective so she was put on palliative care and passed away on Sunday. I am so heartbroken and don’t know how to keep going without her. She was my best friend and I feel so lost without her and constantly feel like I could’ve done something to help or save her.

What has helped you cope with the loss of someone with pancreatic cancer?

Like the title says, I think I’m just looking for some hope.

I (38F) was diagnosed with stage 3 pancreatic cancer back in May. Weirdly (or maybe not so weirdly), the diagnosis came after I had a successful Whipple surgery (negative margins all around). The initial biopsy of my tumor indicated it was precancerous, and it wasn’t until they took the tumor out and did further testing that they realized it was, in fact, cancer & had spread to quite a few local lymph nodes.

I spent most of the summer recovering from my surgery & setting myself up with doctors in my hometown & at MD Anderson. I started FOLFIRINOX on July 28 & am midway through round 3 now (pump comes out Friday). So far, the side effects have been relatively manageable. It’s not fun, but I can more or less live my life normally for now.

That said, some of the test results I’m getting back have me worried. My CA 19-9 levels were well within normal bounds back in late June (19.6), but they’ve ticked back up since started chemo (68 on Aug 11 & 66 on Aug 25). That said, the 19.6 level was a test done at MDA & the other two were done with my local doctor. I also know sometimes CA 19-9 can elevate early in chemo. I’ve also just gotten my Signatera results back (5.23 MTM/mL) & feel a bit concerned about those.

It’s all just very overwhelming. I’m not a science-minded person, and trying to parse these results feels impossible (I know I likely shouldn’t even be trying to do it on my own, but I can’t seem to help myself). Then there’s the disconnect between feeling more or less fine while I’m also actively fighting cancer. It makes it so much harder to wrap my head around the bleak outlook associated with my diagnosis. And even when I have some hope, the doubt creeps in about how much time I can realistically buy. Less than a year ago, I thought I was maybe hitting the halfway point of my life. Now it sometimes feels like I’ll be lucky to get a few more years.

Sorry for the essay. I’ve been lurking here for a while just trying to wrap my head around all of it. And today it finally felt like the right time to try posting my story (so far) & ask for any helpful advice or something, however small, to hang a bit of hope on.

My dad was diagnosed with stage 2b pancreatic cancer in October 2024. He had a whipple on Halloween. He was unable to tolerate chemo and is down to 95 lbs, 5’9”. He found out this week that the cancer has come back in a localized area of the pancreas due to a positive signatera test and PET scan. There are other areas that the report says are highly worrisome, including surrounding lymph nodes. How worried should I be? I feel like his care team are not being transparent about how bad this is. They want to start radiation next week. I am losing my mind and just want answers. TIA

My husband has stage 4 pancreatic cancer that has spread all throughout his liver that is now enlarged and has necrosis, spread to the lungs, lymph nodes and abdomen. It started in the tail of the pancreas and now is in the body of it as well. he gas a high tumor burden and 3 aggressive mutations.

He's only 49. We have 4 sons. We just found out a month ago through a liver biopsy. I'm devastated. He was told about a clinical trial after genetic testing but then on Monday we were told he doesn't qualify because of his fragile state, high calcium levels, anemia, liver failure, and he's declining rapidly. His CA 19 levels rose from 156,000 in July to 256 000 the beginning of August and on Monday they were 325,000. His antigen is now over 2,000. His feet are swelling and so are his legs, he has ascites in his belly, itching, no appetite, confused, not himself, agitated, irritable, just sits on the couch all day, dozing in and out. He's on morphine now for pain and oxy. He was on fentanyl but palliative care team switched to morphine to try to control the pain. He goes to MSK. Our oncologist suggested chemo start this week because she is alarmed by his recent bloodwork and ct scan and said the window of opportunity for safe chemo is this week and is closing. My husband said no to this week for chemo as he said he needed time to think and process it. He is scheduled for chemo on September 3 for the first time. He's so fatigued and tires quickly. He breathes with his mouth open, gets nauseous, and I communicate all this to the palliative nurses. I hate cancer. We are devastated. I take care of him daily and our 2 youngest boys. Our other 2 sons are grown. Please pray for us. Oncologist suggested supportive care and hospice at this point. This all happened so fast. I don't know what to do.

My MIL is currently doing testing for a clinical trial she will hopefully be accepted into. She is very skinny and having a hard time keeping food down and has tons of back and rib pain. She is doing MRI, CT scan, etc. this week to see if she qualifies. I’m worried they are not going to accept her into the trial. For anyone who had/has a loved one who was rejected from a clinical trial, what were some of the reasons? Thank you in advance

Can anyone shed light on this? I have little confidence in the oncologist who my friend is currently dealing with. We are in the process of switching to a different doctor.

She reported the tumor testing results are KRAS Pathogenic Exon 3 p.Q61H and he is not a candidate for any trials. The report also states "Specimen requirements for MI Cancer Seek were not met, therefore MI Cancer Seek results are not reported"

Thank you.

I just finished my 5th round of FOLFIRINOX (1st at 100%, previous provider was going between 80-90%) and still little side effects. I started Neulasta on Friday so I’m not sure if that’s why I’ve felt a bit more run down this weekend, or if the move to 100% was the cause.

On to the good news. Last week I had my first scan since starting chemo and it showed no spread and a 10% reduction in tumor size, with improvement in vein/artery encasement. I’m know that’s not a huge change but it was amazing for me and my family.

Hi all,

Anyone based in Europe know anything about trials? Anyone in an inhibitor trial? Sick and tired of all focus on US while people in Europe are dying...

New article spotted on Medscape regarding a new potential vaccine for pancreatic and colorectal cancer.

https://www.medscape.com/viewarticle/vaccine-pancreatic-cancer-and-crc-sparks-early-hope-2025a1000m3z?ecd=wnl_sci_tech_250827_MSCPEDIT_etid7671395&uac=279474ST&impID=7671395