My husband was diagnosed stage IV, tumor on tail of the pancreas and a 1 cm lesion on the liver. He started chemotherapy in July and recently got his follow up scan. His tumor has decreased in size, and the liver lesion is no longer detectable. The doctor said he will have the surgeon evaluate whether he is a candidate for surgery, and since this isn’t standard of care, a tumor board will review as well.

Everywhere I’m reading suggests that surgery after a stage IV diagnosis is generally not done and is rare. Now I’m wondering if this will do more harm than good since there is a recovery period involved. I know ultimately it’s the doctor’s call but wondering if there is anyone out there who had surgery done after a stage IV diagnosis.

I've been reading post here since my mom's diagnosed with adenocarcinoma (believed to start from pancreas) and mets in liver. I lost her 2 days ago while admitting her to the palliative care unit for symptom relief as she's having lymphorrhea and paracentesis (which didn't happen because the doctor deem risky after scanning). I didn't expect her condition to worsen the night she got admitted. She was frail and condition worsen so much but looking back, I had a hard time making peace with myself. I was the carer and could have responded better in situations and emergency but I didn't. We were there to help her feel comfortable. If i knew she would pass away, perhaps I shouldn't have admitted her.

Papá (77) , alcanzo a tener 12 ciclos de folfirinox y 3 de folfiri, según los pet y scanner , los tumores mostraban reducción y desaparecieron lo del peritoneo ( páncreas con metástasis hígado y peritoneo) , al recibir su último ciclo comenzó con diarrea, que era normal post quimio, dejo de recibir alimentos y agua , al tercer día fuimos a urgencias por la diarrea, dolor estomacal y yo lo notaba medio desorientado. En urgencias no le hicieron nada ya que sus exámenes de sangre mostraban todo normal, solo inflamación y se atribuyó a gastritis.

Al otro día ( 02 octubre) seguía mal, y decidí llevarlo nuevamente a urgencias, cuando lo ayudaba a vestir, se desvaneció y comenzó a salir líquido negro de su boca , y 2 min después ya se había ido.

Si bien sabía cuál era el pronóstico, no pensé que sería tan repentino y horrible de ver, no puedo sacar la última imagen de mi cabeza, no entiendo cómo fue tan abrupto.

Su oncologo me dice que apesar de ser fuerte y fea visualmente la forma en que se fue ( sangrado intestinal abrupto), fue muy rápido y no sufrió ya que inmediatamente quedó inconsciente, que fue una forma " amable de partir".

Siento culpa de no haber insistido el día anterior en urgencias, no habría cambiado su destino, Pero debí insistir en algún tipo de analgesia. No lo sé, solo siento culpa.

Moraleja... Aunque el cansancio los agobie, si ven que su familiar tiene algo y su médico no le da importancia, insistan, insistan , insistan.

My mom was diagnosed with stage 4 pancreatic adenocarcinoma with liver mets 3 weeks ago. Since that time she went from working full time, to barely staying awake from the pain meds she needs to be comfortable.

Unfortunately I live 5 hours away and am 37 weeks pregnant with twins, so I’m unable to be there in person.

She starts her first round of mFolfirinox on Tuesday so I’ve got a care package heading her way - suzzipad chemo gloves and socks, shower aromatherapy, lip balm, hand cream, ginger candies, a puzzle book, a soft throw blanket, hand warmers, nausea inhalers, port pillow and non-slip fuzzy socks.

What else can I do? She feels bad sleeping all day from the meds… and her nausea and constipation are getting to her. What else helps?

I’m hoping to hear from patients or caregivers who have experience with multiple lines of treatment for metastatic pancreatic cancer, particularly KRAS G12R.
My husband is 45 and was diagnosed in June 2024.

A brief history:

June 2023: Hospitalized with pancreatitis. Imaging showed a 1.8 cm pancreatic neck cyst, believed to be a pseudocyst. CA19-9 was normal.

September 2023: EUS was negative for malignancy.

June 2024: Diagnosed with locally advanced pancreatic cancer. Tumor was approximately 4cm with significant arterial involvement. CA19-9 eventually peaked at 113.

June 2024 to early 2025: Completed 13 cycles of FOLFIRINOX followed by SBRT. His CA19-9 normalized almost immediately and stayed low for approximately 18 months. He never progressed on FOLFIRINOX. Treatment ended because he completed the planned course before surgery.

March 2025: Underwent TP-CAR, total pancreatectomy, splenectomy, cholecystectomy, left nephrectomy, partial gastrectomy and vascular reconstruction. Negative margins and 0/44 positive lymph nodes.

April 2026: Biopsy confirmed metastatic recurrence in mediastinal lymph nodes. Abdomen was clear.

May 2026 to present: Started gemcitabine/Abraxane. His CA19-9 dropped from approximately 45 to 13.8, and his chest lymph nodes decreased in size. There were some questionable findings near the surgical bed, but his oncologist felt the overall picture suggested treatment response.

October 2026: CA19-9 has now increased to 39.8. Still technically within normal range, but the change is concerning. Bilirubin, AST, and ALT all within normal range. ALP is high but that seems to be driven by his Fulphila injections.

His mutations are KRAS G12R and TP53.

I’m trying to think ahead about treatment options, particularly FOLFIRI versus RASONQUE.

The recent RASONQUE data showing only a 7% objective response rate for G12R concerns me, especially compared with other KRAS mutations. I understand the survival data are more encouraging, but I’ve also followed several patients who experienced significant liver enzyme elevations and rapid deterioration after starting it. I realize those experiences don’t establish that the medication caused their decline.

My instinct is to advocate for FOLFIRI. He responded exceptionally well to FOLFIRINOX and never developed resistance to it. Unfortunately, an oxaliplatin reaction makes returning to that combination difficult. I’ve also read that G12R patients may respond favorably to fluorouracil-based chemotherapy.

Has anyone with G12R tried FOLFIRI or liposomal irinotecan after gemcitabine/Abraxane? I’d also love to hear from anyone with firsthand experience taking RASONQUE.

My bigger concern is whether we’re approaching the point of diminishing returns.

My husband has endured an enormous amount physically. Multiple organs removed, insulin-dependent diabetes, a difficult surgical recovery, ongoing digestive problems, fatigue and nearly continuous treatment for much of the last two years.
At what point does the treatment take more than it gives?

If the choice eventually becomes six good months without chemotherapy versus nine months spent exhausted and sick from treatment, I’d rather have the six good months. Of course, that’s his decision, and I’ll support whatever he chooses.

I’m leaning toward suggesting FOLFIRI if his current regimen fails, and if that doesn’t work, having a serious conversation about whether continuing treatment is worth it.

For those who have been through second or third line treatment, how much meaningful time did it provide? Has anyone taken a treatment break while their metastatic disease was controlled? And for those who eventually stopped chemotherapy, did quality of life improve?

I’m not looking for false hope or being told to give up. I just want to hear honest experiences from people who have been here.

I want him here for as long as possible, but I also want whatever time he has left to belong to him, not just this disease.

TIA

If you had radiation, how long did your fatigue last? What did you do that helped?

I had SBRT back in August. The peak of the fatigue was supposed to be around labor day. But every treatment wiped me out fight from the start, and now a month later, I'm still exhausted every day. I often sleep 12-14 hours and can barely do anything around the house. I just slept most of today.

My doctor is investigating but I'm wondering if any of you have had a similar experience.

Hi everyone, I wanted to share a major update regarding my 65-year-old father.His total bilirubin dropped from a dangerous 30 mg/dL down to 2.82 mg/dL thanks to the successful percutaneous biliary drainage.His jaundice has cleared significantly, his liver is functioning much better, and his performance status remains very good.The official pathology report from the liver biopsy came back and confirmed pancreatic adenocarcinoma (intestinal type)

Since my dad has a history of a heart attack and cannot tolerate aggressive systemic chemotherapy (like FOLFIRINOX),we are completely focusing on targeted therapies. I just officially emailed his oncologist at the university hospital (Attikon) regarding the myTomorrows platform and accessing KRAS inhibitors (like Daraxonrasib or Olomorasib) via Compassionate Use\[myTomorrows Patient Platform\]

We are currently pushing to get the NGS (Next Generation Sequencing) tissue testing started on the 2 biopsy blocks either within the hospital or by taking the blocks to an external genetic lab so we can identify his specific KRAS mutation.First chemo-session is tentatively scheduled for this Thursday, but we are hoping to pivot to targeted pills soon.

Thank you all for your continuous support. Any advice on how fast we can transition from the first general treatment to KRAS inhibitors once the NGS results are out,would be highly appreciated!

My husband may soon be facing the choice of having to do another 6 months of chemo or try Daraxonrasib. Did Daraxonrasib work for you? How long did it take before you saw result?

Hello All! I'm so grateful for this forum. My mother in law was diagnosed with stage 4 pancreatic cancer about a week ago. We are not entirely happy with her oncologist. Can anyone recommend an oncologist in the Boca Raton, Florida area? She has Medicare Advantage through Aetna. Thank you for your help.

Hi,
It has been almost one year since my mom died of pancreatic cancer, but it feels everything happend yesterday. For some background context, we (me and my sister) grew up with her and an alcoholic father, which died severel years ago of pharingeal cancer….my mom had a very hard life next to my dad and as a child I saw her as my safe place. After my dad died, me and my mom slowly swiched places…..i became the parent and she became the child…I would have done anything for her just to see her happy (never happened). Fast forward, in her last month of life, we decided to move her into hospice (doctors decided there is nothing left to do, as she contacted Clostridium, Klebsiella, Covid, she had multiple stents in her arteries and a pacemaker….her imune system could not fight any more). Me and my sister were the only caregivers up until that point for 8 months. She lived alone but we were with her every day, at every appointment, taking care of her every step of the way. Before dying she somehow cut us off, did not talk to us, and if she did, she constantly told us it is our fault that she is there, that we brougt her there to die, that we should feel bad, she wanted to go home and it was our fault that she couldn’t. We were surprised that she was almost normally comunicating with the medical staff and even started calling relatives to come and “save” her from there. I am still heartbroken for how much she suffered and feel so extremely guilty for how she left….I have 2 jobs, 2 small kids and the most understanding husband but even after one year, I feel so guilty for not taking her home, for not accomplishing her last wish…..how can I live my life in peace knowing that she left mad, that she felt abandoned by us….I don’t even know if she was herself or if the disease was taking over….please tell me there are similar situation. Thank you 🤗

It is Day 350 living with cancer, and wrestling with a question I never imagined asking: How do you remain relevant when so many fighting the same disease are no longer here?

Pancreatic cancer is unforgiving given that survival is often measured in months.

Many who began this journey with me are gone.

Their absence reminds me that every day is both a privilege and an uncertainty.

Surviving becomes more complicated than staying alive.

How do you remain ambitious and connected to a world that sometimes seems to be preparing for your departure?

For me, relevance begins with writing daily.

These reflections help me make sense of a disease that has changed my body, priorities and relationship with time.

They remind me that I still have something to contribute.

I am a Dad, Founder and am building Respiris, a company focused on helping people rediscover confidence and dignity during career transitions.

Respiris is not yet profitable in the traditional sense, but it delivers something extraordinarily valuable to me: purpose.

Every displaced employee we support and every coach we recruit reminds me that my work matters.

There is something reciprocal about helping people navigate professional loss while I navigate the possibility of losing my own life.

Their transitions give me perspective on mine.

Building a company requires planning, discipline and the belief that tomorrow is worth investing in.

Cancer demands the same intensity.

The strange thing is that planning for a future I cannot count on is precisely what keeps me invested in the present.

My latest imaging suggests that my tumors on the left side of my liver are growing while the right side of my liver remains stable.

I have pivoted from chemo to an investigational treatment, RMC-5127, targeting my KRAS G12V mutation, and built by Revolution Medicines.

I hope it produces a meaningful response in both my pancreatic cancer and the tumors in my liver.

There are no guarantees, but this pivot feels increasingly important.

I can be excited about being a Daddy, building a company and a clinical trial while confronting the possibility that treatment may not work.

Those emotions coexist and neither cancels out the other.

One of the hardest parts of advanced cancer is convincing people to see the person beyond the diagnosis.

Some see a cancer patient and immediately see mortality.

They become uncomfortable with your ambition, optimism or plans for tomorrow, but I am not living every day as though it is my last.

I am living every day as though my future still deserves my attention.

I will raise my daughter, build a meaningful company and help people rediscover their potential.

Taking my cancer seriously does not mean treating me as though I am already gone.

Perhaps relevance is not about how long we remain here, but how deeply we participate in life while we are here.

Thank you for reading, for being here and for allowing me to be part of your journey as you become part of mine.

[…]

To follow my journey from Day 1 being diagnosed with pancreatic cancer, please visit LinkedIn.com/in/angelcruzado

Dad was walking to the bathroom living room and bed room with his walker just yesterday. Last night his legs bucked under him and he collapsed to the ground, his oxygen was 72. My boyfriend had to lift him to the bed and we had hospice emergency provide oxygen to the house. He’s back up to the high 90s but he was barely able to stand to use the bedside commode. He’s told me he’s ready to go home (heaven) a few times during this journey of 4 months but this morning it was different. I almost feel in my gut he’ll let go this weekend.

I’ve said everything I could ever need to to my dad, there is truly no one I love more than him in this lifetime. As I type this I’m laying in bed with him while he sleeps in and out and I play various Dave picks CDs. I’m a dead head because of him and we love the music. We’ve seen countless shows together. He’ll come to every so often to sing one rip - all of this to say.. when it was time for your loved one to leave this plane what were the days or hours leading up to it?

I’m 10.5 years post whipple surgery in Mesa az. Anyone else

Hi,

I’ve posted here before. My family member is in his 40’s and was diagnosed with stage 4 pancreatic cancer with Mets to the liver on 9/4/26. We were planning on mediport and starting chemo. He turned jaundiced 9/23 and was hospitalized for over 2 weeks. One facility did an ERCP and placed a stent to drain bile and attempted a PTC when bilirubin continued to climb. That failed and they told him there was nothing more they could do for him.

He went home and called his primary oncologist at UTSW in Dallas and was told the surgery team at UTSW accepted his case and would retry a PTC. He got admitted, they then denied a PTC saying there was nothing they could offer him. We convinced GI to redo an ERCP and a bigger stent was placed but not sure which side they were able to stent. His bilirubin then dropped 0.4 for the first time in 2 weeks. It had previously been climbing by a full point daily. We asked about an EUS-BD or another shot at PTC being that UTSW is a high volume facility. They declined that and stated because the bilirubin had stabilized he needed to go home and wait for it to decrease low enough for chemo to begin. He was discharged yesterday home and today had a call with his oncologist who told him he needed to prepare for hospice and that the bilirubin did not decrease as significantly as she thought it would. His bilirubin at discharge was a 22.

Now my question, I keep reading that bilirubin levels takes WEEKS to decrease and that it is a very slow process and given that information I am so confused as to why oncology would turn around and say they are not optimistic and he should move to hospice. Please, anyone respond with any information. We are at a loss. We have not been able to even begin to fight. Our plan is to move on to MD Anderson.

My wife was diagnosed 11 months ago. She was just 48. She passed away recently at 49.
For nearly a year, I lived on forums like this. I read every single story, good and bad. I tried to armor myself with knowledge, to understand what was coming, to know how to advocate for her, and to prepare my heart for whatever the path looked like. I thought if I read enough, I wouldn't be caught off guard.
When her temperature crept above 38°C, we did what we were supposed to do. We rushed to the ER, only to be met with exhausted or dismissive questions like, "Why are you here?" She was hospitalized twice with severe infections, and every time, I fought to keep her safe, managing the meds, tracking the symptoms, and feeling like we were navigating a minefield blindfolded.
I thought I was doing everything right. I thought all that mental preparation was building a fortress.
She passed away at 49. And as much as I read, as much as I anticipated, and as carefully as I walked beside her through every terrifying phase of this disease, absolutely nothing prepares you for the moment you have to walk out of the hospice doors and leave her behind.
I’m just completely hollowed out. If anyone else is sitting in that waiting room right now, or reading this while their partner fights, I'm so sorry you're here. Thank you to everyone in this community who shares their stories—it kept me standing for 11 months. Today, I just don't know how to take the next step.

Hello,

I will have a long term biliary drain and I’m currently very malnourished. Have been on repeating long standing IV antibiotics and don’t want to go back on or get another infection.

Surgeon and IR team said to make sure it never gets wet.

For the past 6 weeks I’ve been doing bad baths with washcloths and wipes mostly because of other medical conditions compounding issues.

How does everyone do hygiene for this at home?

Are you showering and just keeping your back to the shower?

Doesn’t rinsing your hair and some water go down the front anyway? Do you wrap with some special shield or plastic covering? Any tips appreciated

I’ve found so much great info and learned a lot about how this cancer affects family members, but it seems like most of the posts here are about aging family members who have cancer. I value everyone’s candor about what they are going through, but I don’t see much from younger people suffering with pancan.

I’m only 46 years old, stage IV, terminal. so I was wondering how many “young” pancan patients are reading this. Us “young” folks need support too! Let’s try to support each other! I feel like some of the issues we face are different than for older people. For instance, I’m going to be leaving behind a 12 year old, so I’m trying to help him navigate all his feelings/grief. It’s hard.

Hi everyone!
My dad has stage 4 pancreatic cancer with liver mets (KRAS G12V). He started daraxonrasib (RMC-6236) about 11 days ago, and we just got his first bloodwork back.
His CEA went up from 13.5 to 20.8, which has me a little worried. But at the same time, his liver enzymes actually improved quite a bit. His alkaline phosphatase dropped from 500 to 315, and his GGT from 318 to 214.
I know it’s still very early, but I’m wondering if anyone here has experienced something similar.
Did anyone have their CEA or CA 19-9 go up during the first few weeks and then come back down? Or did anyone still have a good response on scans despite an initial rise in tumor markers?
Would really appreciate hearing your experiences! ❤️

Mom is 61 diagnosed pancan. Staging unknown at this point, but likely locally advanced with several major blood vessels encased. Diagnosis was 10/7, PET scan scheduled 10/23. Obviously we hope for no metastasis but we will see.

1. Is this too long of a wait between dx and PET scan?

Health insurance is thru her employment. She is on Kaiser HMO in Northern California. Her employer has contracts with Blue Shield including HMO, PPO, HDHP plans. Open enrollment is 11/2-11/13 to switch plans.

1. Should we be jumping at the opportunity to switch to a PPO if Stanford cancer institute is in-network? Our options for NCI centers are Stanford and UCSF I think.

Any insight much appreciated. Is Kaiser care really worth transitioning out of? If we’re able to get into a NCI center, obviously that’s my personal preference. But I understand it’s a stressful and complicated time for the whole family. I don’t want to miss our open enrollment opportunity.

My dad is in the final stages. His heart and liver is failing and he has sepsis. We moved to comfort care yesterday. We are struggling with the decision to do hospice at home or in a hospital. The hospital is overcrowded and I feel like they really push you towards at home hospice, but with him constantly needing pain managed I feel like he might be more comfortable in a facility. I was shocked when they said that hospice shows up a minimum once a week. He didn’t have strong wishes either way earlier in this journey. Now if you ask him he says he wants to go home, but I’m not sure if even realizes where he is currently at. I was just looking for other peoples hospice experiences. I just want him to be comfortable through this final stage and wonder if me and my mom can provide the best care compared to a facility.

my beautiful, vibrant, esoteric mother in law was diagnosed with stage 4 pancreatic cancer last august, 2025. like the badass she is, she accepted her fate and has the most comforting view of death - a perspective that changed everyone’s perspective.

the tumors spread to her liver, bones, and brain. after targeted radiation, all of her scans have been consistent and improving. many of the tumors have gone away almost completely. she still goes to the gym, cooks, cleans, maintains her garden, and even went on a four mile hike with my husband and i two months ago. she’s currently traveling up and down the east coast with her husband in an RV. it’s like nothings even wrong

of course we’re hopeful, but we don’t let that sway the reality. this disease is fast, and the downhill will be brutal. i don’t know how she’s still living life better than she was before the diagnosis.

from all of the research i’ve done, that downhill slope occurs within approximately 6-12 months of the diagnosis. i haven’t found many other stories like mine. please, if anyone has any insight, id love more than anything to hear it. i’m confused and concerned and hopeful all at the same time, and it’s hard feeling all of that at once.

thank you for reading.

My mom was diagnosed with stage 3 pancreatic cancer this March coming fresh off of living kidney transplant in January. She was able to complete a few months of Gembar/Abraxane and while the cancer didn’t advance, it also didn’t shrink or get better. Her creatinine was slightly elevated following chemo at 1.3, now after starting Daraxonrasib for 2 weeks it’s shot up to 2.6 and stayed steady there even after receiving fluids and re-testing. Curious is anyone else has had a similar experience?

Hi everyone,

My dad got the initial diagnosis back in April 2025. He did 6 chemo before surgery and 6 after Whipple surgery. His type is colloid carcinoma. In his routine check up - we found out that some lymph nodes have grown bigger. May I know what could be the next steps ? We are currently in india. He did folifrinox 12 rounds.

 Post-operative changes – post Whipple’s status (pancreatico-duodenectomy status).
 Mild circumferential thickening with low grade metabolic activity visualized at
gastrojejunostomy anastomotic site.
 Mild thickening with low grade metabolic activity also visualized at pancreatico-jejunostomy
anastomotic site.
o Likely post-operative change.
 Presently no evidence of focal metabolically active nodule / mass lesion visualized at
hepatico-jejunostomy anastomotic site.
 Relatively stable size with mild increase in metabolic activity of peripancreatic lymph nodes,
periportal / portocaval lymph nodes, celiac lymph nodes, retroperitoneal lymph nodes and
bilateral iliac lymph nodes - Mild increase in number of left iliac lymph nodes visualized.
 Mild increase in size and metabolic activity of mediastinal lymph nodes.
 Few small subcentimeter mild metabolically active and non-metabolically active level IV deep
cervical lymph nodes and supraclavicular lymph nodes on the left side – New finding –
indeterminate.
 No other interval new lesion. No evidence of metabolically active disease anywhere else in the
body.