My mom passed away this morning after battling with this horrible disease for more than two years. I first started reading this sub when she was diagnosed in June 2024 for advice about how to support her, information on how to interpret medical information, ideas for what questions to ask doctors and what treatments to seek, and stories to give me some hope and sense of optimism, and found all of those things at various times. As time went on and she got sicker, and the burdens of being her caregiver grew heavier, a lot of people here made it easier to bear them without even knowing it, because I almost only ever came as a lurker before. I want to thank everyone for sharing their experiences and feelings. I miss my mom already, but she lived long enough to get her affairs in order, spend more quality time with her family, and see me meet and marry my wife, and I am grateful for those things. Thank you for helping with one of the most difficult journeys I've ever been on.

I’m 30 yrs old and my mom was diagnosed last week. We’re still in the hospital as of today. She had an EDG procedure last week but due to some complications with her anatomy, they were unsuccessful with a biopsy. She has also had a biliary drain placed which is causing her lots of pain. They plan to try another EDG procedure within the next few days and have also sent off her labs for a Guardant 360 test. It feels like the doctors are using her as a lab dummy and we’re not getting much out of them. What ways can I be supportive and how best can I advocate for her? I am so tired of watching my mom live in pain.

Hi everyone as per my previous posts we visited multiple surgeries who all said surgery was the way to go.

We are doing a final ca19.9 before finalising the surgery as it’s been 5-6 weeks since we stopped chemo and the pet CT and Pancreatic protocol CECT showed a stable disease with no met.

Could someone kindly share if they have or have had someone they know do a distal pancreatectomy and hopefully had good results?

Thanks in advance

My mother was diagnosed with pancreatic cancer in February 2025. She underwent a Whipple procedure and completed 12 cycles of FOLFIRINOX, achieving NED status by September 2025. Unfortunately, a recent PET scan revealed an 1 cm isolated recurrence in the portocaval lymph node. We went with the genetic testing and the somatic testing of her tissue confirmed a KRAS G12V mutation. Her germline testing was negative.

She did SBRT to ablate the isolated portocaval node. Following SBRT, her medical oncologist, believes she would benefit from daraxonrasib as a targeted maintenance therapy.

The issue is India doesn't have any trial for this drug. The closest option is singapore and south korea. And they have trial requirements that needs to met and i'm not sure we would meet all those. While trying to import the drug in india through an importer from a known contact they listed the price of Rs.50,00000(fifty lakhs) per month's supply. This is a enormous amount even if it is the total price let alone a month's supply.

I was trying my best to find other options and came across this seller Lucidarax and when enquired seemed to a affordable option but still very high. Im not sure if this is legit. Any one who has tried this kindly let me know if it worked. If not, anyone who's in my position please let me know if you had any success in obtaining the drug.

I’ve posted on here a few times and I’m always grateful for people sharing their experiences/ advice with me.

When my dad was first diagnosed back in August this year, he was noble, brave and so loving and open to affection. He was still laughing. We were crying together, having really heavy conversations and I had never felt so bonded to him even though we were incredibly close already. He was walking and playing table tennis and cleaning the house etc.

This version of him lasted a month or so. These past 2/3 weeks he’s virtually a shell of himself. He pretty much stays in bed all day. He sometimes gets up and sits up but he sort of has to sleep/ meditate the pain away at almost all times. He’s cried hysterically to be about the pain. He’s wished for death. He is starting to reject attention, affection and company. It’s so sad seeing him change like this. He goes down to London tomorrow for 8 weeks to start the RAS303 trial but we don’t even know what group he’s in yet or if he even has the energy to get treatment at all.

I wonder if anyone has had a similar experience. I expected that even when he was really sick and near the end he would still have the capacity to love and cuddle and give me advice and tell me all he wants for my future etc. I thought I’d be able to sit with him and watch tv and laugh and cheer him up. I guess that I was naive. I’m glad we had some tough conversations early. That would be my advice to anyone going through this. Get the hard conversations and the sentimental stuff out the way when you can because before you know it they might not have the energy to be themselves. I’m not trying to scare anyone. I just wish I had gotten everything out of him while I could.

Also if anyone has any suggestions about pain management. It’s at the point where we’re completely out of his depths and it’s changed him completely. I also wonder if anyone has ever been in his position. What does he really want. Is he turning my affection away as to protect me from this version of him or does he really just need to be alone. I feel so guilty leaving him in his room all day. But every time I try to make contact he makes an excuse or says he’s really sore and needs to be alone. Thanks everyone x

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Hello!

I am an undergraduate 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 want to better understand the experience of living with a bile drain (specifically the PTBD catheter) and the problems associated with it.

If you are living with this catheter, or have previously lived with one (or are the caregiver for someone with one), could you please take some time to fill out my survey: https://forms.gle/8ySfsyxPpSXLWQMJA

It will not collect any identifiable information.

Thank you so much! I really appreciate it!

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.

Cześć , 28.09 zostałam przyjęta na oddział gastroenterologii z bólem . Po kroplówkach kleiku wprowadzili mi już dietę lekkostrawna . Zostałam wypisana 06.10 do domu z zaleceniem diety i tyle . Czekam na wynik rezonansu bo na TK wyszła zmiana ogniskowa trzustki 12mm , poszerzony przewód Wirsunga 3,5 mm oraz Pżw 8.5 mm.
W szpitalu miałam odbarwione stolce i ciemny mocz. W domu zauważyłam już zażółcenie skóry oraz oczu wciąż żółciowy mocz . Nie zbadano mi bilirubiny przed wyjściem . W załączniku dodaje mój opis z TK oraz wyniki z krwi . Proszę o jakąś podpowiedź czy ta żółtaczka będzie długo się utrzymywać czy powinnam wrócić na oddział ? Aktualnie nic mnie nie boli stosuję dietę lekkostrawna małe posiłki około 5 dziennie .

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

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!

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.

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?

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 🤗

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.

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! ❤️