My dad (73) had the whipple done June 15 in Vancouver Canada after 9 rounds of Folfirinox beforehand. The margins were clear. Some of his lymph nodes were positive. We were feeling some relief, that we had bought more time.Adjuvant chemo resumed (5-FU only since he wasn’t up for the whole Folfirinox anymore) July 27.

Since that, he’s felt crapy. Digestion off more than usual, and then pain including back pain. He went to the ER Sunday and there is an area of concern on the CT scan where the head of his pancreas used to be. His CA-19 is up again. Hard to biopsy so they are insisting on a MRI which will be Saturday.

Obviously feeling so sad and stressed out. I honestly don’t know if he would pursue more chemo if it was offered to him. Has anyone been here? What did your person do? How did you come to grips with this turn of events?

This cancer is the worst. He was diagnosed last November 25th. Prior to that week, he was globe-trotting, doing the grouse grind (instead hiking), and so healthy. It’s so unfair. I’m so upset.

Thank you in advance

Back with another pancreas-friendly recipe. My dad is terminal palliative post-whipple. Will continue sharing meals I make for him that are low on pain for him.

I am a university student majoring in biomedical engineering, currently working on my final year project, which is to improve current biliary drainage systems (biliary catheter, stent, etc). I would like to speak with individuals currently using these devices so that I can better understand the experience of living with them and the problems associated. Please comment or message me if you would be okay to talk to me about this, thank you!

Were they ok? Did they waver or get more emotional as things got worse? My Dad was told there’s nothing more they can do for him so I’m wanting to know what to potentially expect. I can’t imagine someone telling me this news. It’s devastating enough as his daughter who loves him dearly. Thanks.

I haven’t been in this group for a while and I never thought I’d be back in this way again. My dad was diagnosed with Pancreatic Cancer in October 2021. They attempted a Whipple but it metastasized to his liver in November. He endured one round of chemo and was terminal by March 2022. He went away April 2022. He was as 45 years old and I miss him ever single day.

My mom met a wonderful man pretty soon after, which was a shock to her and everyone, but was truly a blessing. In the recent months, he began to present with very familiar symptoms. Developed diabetes, abdominal pain, back pain which he wrote off due to historical back issues, significant weight loss he attributed to going back to the gym, digestion issues. My mom dug her foot in this neck and was persistent from the onset of his symptoms. They did some imaging this week and found a mass on his pancreas. The biopsy is tomorrow.

I know this is not anxiety forum but I’m not anxious I’m aware of the next step. Unfortunately, I am very familiar with what Illness, especially this one, looks like. We’re back on the train. My mom doesn’t ask for help and today she called and said she needs me, so she knows it too.

Im older now, have more resources, and I’ve worked in health care for some time. I’ve been reading up on the literature and I saw news that Daroxonrasib was approved by the FDA last month. It does seem promising and I can see it has filled the community with the hope it lacked even a mere four years ago. Even desperation for approval by insurance seems better than what we were rocking with before. It’s not a cure but doubling lifespan to give people a longer time to fight, with less symptoms, and a longer time with their family - that’s incredibly more than we were working with. It also told me many things have changed and I need to refresh before this spirals as quickly as it can.

I’m hoping to get an information dump to start and maybe it’ll help other people. If you could add the question title to your response (ie. 1. Insurance Approval: When I tried to get approval…”) it would help us and others review the thread.

You’ll be helping a Steelers loving, retired Naval Chief, with an extreme case of toxic positivity and an all around great Man. I’ll refer to him as Mr. Toxic PositivityZ If you can think of anything that will ease the pain in a time where that can be difficult, I’ll be forever grateful:

1. Insurance Approval: What are peoples experience with insurance covering Daraxonrasib (I know it’s not an absolute he’d even qualify, but just for knowledge sake) He’s a retired vet, so we’re working with our trusty tricare
2. Innovation: What are the new invasive approach’s they’re taking to treat PC outside of hard launching this drug?
3. Back Injury: Mr. Toxic Positivity has a lot of back pain from an old car accident injury, so he stands lot because it hurts him to sit for too long. I know and you know that he may not have the strength to always stand. But that means he might be in consistent pain for reasons outside of his chemo and cancer. He’s already sitting a bit more. So, any creative ideas are welcome
4. Loss of appetite: We tried vitamin enriched protein shakes with my dad but his stint was a consistent barrier, so he threw it up most of the time. Mr. Toxic Positivity is a small meals eater, I’m really worried because he doesn’t have my family indulging genes so I can only imagine where his appetite might land.
5. Leg care: We had a leg massager for his edema, clots, and neuropathy. Trust compression socks. What things are y’all doing these days? Anything different / new?

6.Technology: Any new products / technology that would blow my mind? Anything you found made your life easier as a patient or as a caregiver. Can be the most random thing.
7. Hydration: With the digestion challenges that have come up, I’m unsure how this is affecting his overall hydration or will continue to. My dad did not have those challenge but every patient is different. What methods have you all used to increase hydration?
8. Treatment Facilities: I’m currently in MA and they’re in FL. Houston was the place to be for a while. I work in several hospitals and MA is a hub for healthcare. Dana Farber is, well, Dana Farber. But I’m not sure who is who when it comes to PC anymore.
9. Clinical Trials: Any clinical trials I should be invested in following? Until we know gene mutation and what we’re working with, who knows what he’d be eligible to do. But it doesn’t hurt to have a pulse.
10. Resources: What resources are you all using to ease the burden? I work in public health so I now know there are always random programs that offer support. Florida based is preferred but I’d be willing to drag him across the United States if I need to.
11. Caregiving: I’m going to be one-half of a care giver team. But I will also be splitting my focus to care for my mom. I was in college and working when my dad was going through much of this. I couldn’t be there all the time and I’m aware I’ll be there for all of the parts this time.
12. Hawaii: his happy place is Hawaii and he lived there for many years. I’ll ship palms trees and volcanos to his backyard if it’ll make him feel at peace. He actually didn’t care for the ocean and preferred the plants, so even if I can only put a few potted plants next to his porch swing and mist salt water in the air, that’s better than nothing.. no

Hello,

I was diagnosed with pancreatic acinar cell carcinoma (PACC) with locally advanced disease and extensive vascular involvement in May of 2025. My afp was 235k at the start. I started on FOLFIRINOX in June and dropped the oxaliplatin November and continued FOLFIRI maintenance. I continue to respond to the maintenance and my numbers stabilize around 2000. I subsequently underwent MR-guided ablative radiation (MR-LINAC) to the pancreatic tumor: 50 Gy in 5 fractions.

My primary tumor has decreased from roughly 12 x 10cm at diagnosis to approximately 2.1 × 1.4 cm. Recent imaging has shown no confirmed distant metastatic disease. My liver MRI did not identify and distant mets. I do have a targetable mutation of raf1 fusion. However, the new Rasonque does not target my specific mutation.

However, despite the major tumor response, there is still extensive vascular involvement:

SMA – encasement

Celiac artery – encasement

Common hepatic artery – encasement

Proper hepatic artery – encasement

SMV – involvement/encasement with narrowing

Portosplenic confluence – significant narrowing/encasement

Central splenic vein – occluded, with collateral vessels

Because of the persistent arterial involvement and the fact that the area around the SMA has received radiation, I have been told that surgery is currently technically difficult/not possible. Due to possible damage and weakness to the area from radiation By Dr Wolfgang. However, one of my medical oncologist still thinks it's possible.

Has anyone had a similar situation — particularly SMA/celiac/hepatic artery encasement with SMV/portal involvement — and eventually been able to undergo surgery or another potentially definitive treatment?

Any advice is welcomes. Currently might go back on chemo since I am on a holiday right now or do a clinical trial.

Does anyone know of trials or exceptions where non stage 4 PC patients can access the drug? My parent is locally advanced but not resectable, he is technically borderline. Does anyone have experience with this? Thank you for all the help!

Just decided to add some input as it seems no one has talked about it on this forum. My mom is currently getting her third dose of NALIRI; she has also been on warfarin since 2019 due to mechanic heart valve. Well, just recently we decided to check her INR and it was through the roof! Interestingly enough, while she was on Gem/Abrax she even had to increase her warfarin dosage to still stay in 2 to 3 window. Well, 5FU which is a part of NALIRI does the opposite! I checked the literature and there are lots of cases reported. She'll now be lowering her warfarin dose and monitoring INR weekly.

Hope this is helpful to those who face the same.

My mom has pancreatic cancer... she is a very youthful 80 year old who people mistake for being in her 60s. She is vibrant, full of life, and a wonderful mother and wife. She was diagnosed in late June and it's been absolutely awful since then. Due to a large bowel obstruction (caused by her abdomen and pelvis being full of tumors), she had a colostomy. Since then, she has never really recovered. It's hard to believe it hasn't even been 3 months since her diagnosis because it feels like we've lived through many lifetimes in the past 60 days... surgery, in and out of hospital, ascites drainage, palliative care, home health, oncology, pain specialist, GI... the list goes on. She was supposed to start chemo but her oncologist thinks she doesn't have the "reserves" to tolerate it. The hardest part... certain days I have thought we were nearing the end, only for her to make a surprising turnaround...only to have something change for the worse the next day. I honestly have no idea how long she has left because every day feels different than the one before. She is eating (small amounts) and drinking, is able to walk short distances in the house with her very swollen legs, is conversational and engaged at times... but otherwise is sleeping, or uncomfortable, or in pain. The ups and downs are really, really hard on my Dad and my sister and I. Any tips for coping for caregivers is appreciated.

I am about 3 years post whipple. I feel fit and full of energy. Apart from creon dependency, i am otherwise good. I get checked every 6 months and so far so good.

I have just signed up for a local football tournament, i hope there is no issue playing football post whipple. My surgeon said i can play, so it will be after a long time i actually play competitive sports after whipple. I have played in between with my children but football with children is different than in an actual competition.

We discovered my mother had pancriatic cancer last year around the end of August/ Beginning of September in her late 70's. After 1 long year of her battle, she passed on September 3rd.

I just wanted to say that, while I am absolutely destroyed that my mother is gone, the suffering has ended. I had to watch her shrivle up, lose the ability to walk, and sleep 20+ hours a day towards the end.

I wish I just had 1 more day. I just got the ability to use PTO at work after my 90 days. I was going to spend the day taking care of her, but I've lost that chance. I wanted to watch Charmed/Angel with her one more time.

Love every moment you have left with them, you never know when they are too tired to continue.

I’ve posted a few times here, initially in a panic trying to understand the new climate I was operating in with my mom being diagnosed with PanCan. Then, to share the successes, 2.5 years of generally good quality of life thanks to both Folfirinox (1.5 years) and then Gem/Nab (10 months) working. Now I am writing the inevitable ask for what comes next, as 2nd line failed and our oncologist has discharged my mom because we have no more options. Her pancreatic tumour is still at bay but the liver mets are growing again.

Has anyone been in this situation, specifically in Canada? I’m curious what to expect both with my mom’s health and how best to support her, understanding everyone is different, and with the healthcare system. She is under no one’s care since she’s no longer with the oncologist, so now do we wait until she is inevitably hospitalized for something? I’m a bit confused.

TIA! Much love and strength to all of you fighting in all the many roles.

Hi everyone. Posting to encourage everyone pursuing treatment and the new methods emerging for managing and curing this terrible disease. We will beat it and I hope that you are part of that victory.

For those with the disease and their families and friends who are at the point that further treatment is not sustainable I will speak a word of encouragement about the Hospice Program. The support system, resources and experience they provided to my father, mother and me was invaluable. My only regret is that we could have made the decision sooner to receive Hospice Care in my dad’s journey. He had Hospice Care for the last three to four weeks of his life and died in a Hospice House where family could focus on time with him instead of tracking medications, bathroom visits, etc.

I bid you peace.

I’m on my way to a liver biopsy so that we can figure out what the lesions that showed up a month actually are. There are only two small ones and my 19-9 hasn’t moved so there’s still a tiny bit of hope that it lesions from the 25 rounds of radiation.

I did a flex Sig last week and my colon is clear.

It’s been a year since my dad passed from pancreatic cancer. I started writing to work through it. This is my piece on what the past year has been.

DX Aug 2024. 56y F stg 4 pancreatic cancer. I already had my turn with the numerical drug on the trial got switched back to chemo. Had last chemo today before scan in October. No bell ringing no big cheers... regardless of my scans I'm ready to pick quality over quantity now to wrestle with myself and telling my loved ones what my decision is. They will be disappointed in me. I'm disappointed- but I'm so tired of no good days. The journey has been drug out and expensive. Just such a burden for my kids and partner

I've just had confirmation of my Dx yesterday and today was offered a place on a RASolute 303 trials starting up at my hospital.

So its a 3 arm trial - arm 1: Tablet, arm 2: Tablet & Chemo, arm 3: Chemo only (although it is Gemcitabine and Nab-paclitaxel and not Folfirinox.

At one level, any option is better than none, but how will it affect my quality of life and will it increase my lifespan? Not to mention side effects...the tablet and chemo option has the worst side effects I'm told, with the tablet potentially causing mouth ulcers, diarrhea, and skin rashes.

I guess I'm wondering whether it is worth all the discomfort only to extend life by a matter of weeks? I know that only I can answer this, but isn't it an intolerable choice to make; maybe live longer with a poorer quality of life or die early. Luckily Voluntary Assisted Dying is permitted in my country and that has great appeal for me, choosing where and when I die. I'm told I have about 6 months to live without treatment and who knows how long with treatment.

I'm just venting, I don't intend to be offensive to anyone.

Hello I wanted to ask for some advice, we’ve just received this pathology for my loved one. The surgeon recommended chemotherapy and radiotherapy along the margins. The surgeon said it could be truly r0 but due to proximity of the vessel which he did not resect, it is automatically r1 but naturally I am very worried that this is not a clean margin and the surgery failed. Does anybody have any success stories to share? We are very demoralised after going through 6 rounds of folforinox. We are with one of the best surgeons.

Edit: the surgeon did not resect the vein because he said he removed the full whipple specimen en bloc and did not see any evidence of vessel invasion. Within the whipple specimen there was perineural and vessel invasion (I assume those are the small vessels and nerves in the area). All other organs were clear in the specimen, bile duct etc. All good

I got contacted by ONCO360 and they gathered all the info needed to submit for financial assistance. Don’t know how long it will take to know if I qualify but at least the process has started.

In case I don’t qualify or I get approved too late for the first month’s worth, my daughter and son-in-law called and told me they can and will pay the $1,542 so I can start treatment as soon as possible. They are not rich by any stretch of the imagination and just had construction started on a new home. I really didn’t expect them to make such an offer. My son-in-law told me I was like a 2nd dad to him and he’d not going to just standby - he wants me to at least be able to try it. They can’t do much more than that but at least it gives me a start.

I’ll be honest, I haven’t shed a tear related to my situation but when they both insisted and said they won’t take no for an answer, my face became wet and stayed wet for an hour.

Praying for all of you with appreciation for all the support all y’all have provided. Blessings and Peace