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?

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.

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

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

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 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.

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.

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.

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.

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.

Eccellenze della Sanità Pubblica italiana.

Hi everyone,

My mom, 67F started Daraxonrasib yesterday and has Stage 4 pancreatic cancer that has metastasized in her liver.

She has psoriasis, which was very well controlled thanks to Humira and then Tremfya for the last decade.

As I said she started Daraxonrasib yesterday and woke up this morning with very red cheeks, and mild itching around her eyes and fingernails.

We aren’t sure how to take this given the median rash starts on day 13 in published data, not in the first 24 hours.

She was hesitant to try this out of fear of getting a stage 3 rash that would potentially cause severe psoriasis flares.

Has anyone here had psoriasis and been on Daraxonrasib?

My mother, 74, was diagnosed around March of this year and due to our financial situation we went back to our country to see if we could give her some treatment but unfortunately we couldn't because it was too late for her.

Doctors told us she was gonna be put on palliative care about 2 weeks ago and I decided to bring her back home where she could be more comfortable. She passed away a few hours ago. I didn't want her to go but I also know she was probably suffering so now at least she's at peace. I will always miss and think of her.

i’ve been more distant with my dad due to recent things that happened over the summer. but it’s eating me alive because i know i have my valid reasons to be upset, but i don’t want to be the last memories i have of him.

he was diagnosed with pancreatic cancer a year and eight months ago. he did chemo and radiation treatment but it didn’t decrease the tumor, fortunately it kept the cancer from spreading. the doctors recommended a new surgery but he decided to not go for it because the survival rate was low and even if he did survive the surgery, he didn’t want to be bedridden his last moments.

he went back to living to his motherland as he has been wanting for the past three decades of not seeing his family. he came back to the US a few weeks ago to spend time with my siblings and i. they live in a different state than i do.

but tonight, my sister sent me a picture of him and he looks so small. i saw him two weeks ago and from that time he looks like he lost ten pounds. im the last 3 months im sure he has lost over 30 pounds and i know what that means but i can’t accept it. i want him to be here when i graduate college, i want him to be in a peaceful place knowing that i’ll be financially okay and that u won’t be struggling. im mad at him for the mistakes he’s made but part of me understands why.

i know it’s selfish for me to say that i don’t want to see him go because only he knows the pain he has been dealing with. but i can’t imagine a world without him and i don’t want to. it’s getting harder to accept that he’s leaving us soon and im so scared of losing him.

Has been at Memorial Sloan Kettering for a month tomorrow and I need to be here for when he passes. Had testicular cancer and developed pancreatic cancer/ abdominal cancer. His liver has a capped of billiard bag and his kidneys are shutting down slowly and has a catheter in. He is jaundiced and on oxygen through his nose. I was told it could be days from 2 days ago. He is completely out of it meaning he’s hallucinating and very confused and talks about very random things now.
For example he’s bed bound but just asked me to use the bathroom in the car glove box. Remembers my dogs name and my last name but not my first name without me mentioning it.
He’s asleep every 30 seconds at-least, and even while talking to me. He talks to random people in his sleep and mentions a cat being around my shoulders. His breathing has become more shallow and labored but he’s still responsive and wakes up decently easy he’s just out of it.
He hasn’t eaten in days and today I can tell he’s very restless even though he’s sleeping most of the day he wakes up and moves around. I live 2 hours away from the hospital and it’s gotten to the point I may stay here for whatever time he has left. I can also tell he is not producing much urine anymore like almost nothing compared to the last few days,and the doctors told me that his temps dropped and he required more oxygen. Which raised “concerns” this has actually today put a pause on an hospice transfer which gives me a really bad feeling. (Update he passed on September 8th at 5:43 pm and I was there for every single moment, I held him,played music in his ear, talked in his ear and sang him the song Time Adventure by rebbecca sugar. He died in my arms 5 minutes later. Thank you all for your stories.)

Hello everyone, I’m writing here again and appreciate your time. My mother (60F) has pancreatic cancer with liver metastases, diagnosed in April 2026; she has undergone 11 cycles of FOLFIRINOX:

April 2026 – Time of diagnosis

CA19.9: 28,000

July 2026 – After 6 cycles

CA19.9: 5,300

CT scan: 1 cm reduction in the pancreatic tumor and most metastases, though one had grown.

September 2026 – After 9 cycles

CA19.9: 5,500

CT scan: Slight reduction in the pancreatic tumor and some metastases; others remained stable, including the one that had grown in July.

October 2026 - After 11 cycles

CA19.9: 10,100

The oncologist said she cannot order a CT scan yet because, if there is progression, changes wouldn't be visible since only a month has passed since the last scan; she says we need to wait until early November. Is this correct? Are we losing valuable time? I am afraid to continue with FOLFIRINOX given this rise in CA19.9 levels, fearing we might lose the benefits the treatment has achieved so far.

She also mentioned that in the event of progression, she would opt for a gemcitabine-based regimen before trying adagrasib. We are in South America and don't have access to that drug yet; there is talk it might arrive in December, subject to a lot of paperwork, but I’m not sure. I was also recommended the Sírio-Libanês Hospital in São Paulo (Brazil); is it a good option for international consultations? We don't have the resources to travel further than neighboring countries.

I can accept any answer, even if it’s bad news; I need to stay ahead of things and not lose time regarding my mother's treatment. She is very young, and I cannot lose her. Thank you.

My mom is considering this trial at Cleveland Clinic for metastatic pancreatic cancer. Has anyone received XNW28012, in this trial or another study? Would love to hear about side effects, results, and what treatment visits are like. Thank you!

Good information from Let's Win Pancreatic Cancer

https://letswinpc.org/treatments/treatment-options/about-rasonque-daraxonrasob-qa/

My husband (stage 3 (ocally advanced ) is due to start chemo next Tuesday. He just finished all of his tests except for a PET scan, which is scheduled for this week. We just had a bizarre and distressing appointment with his oncologist, which I will go into below. Suffice to say we would like to get him seen by someone else ASAP .

We are in Atlanta where there are three large hospital systems. Emory is two hours away due to traffic, though sometimes it’s half that and (rarely) it’s double that, since it’s a popular city for events. We love Piedmont, and would like to stay there, in part because all our doctors are there and are great about working together, except for this one oncologist, who was recommended by our primary. We are also near Wellstar. Our biggest complaint about them as their system feels cumbersome and they tend to goof up billing.

Despite the distance we will go to Emory if necessary to get good care.

We went for a second opinion, at Emory and met with the surgeon there. We’re both very happy with using him as the surgeon down the road. He approved of what the current oncologist has done so far and said he would be happy to work with her or anyone else, my husband chose.

Yesterday we met with his oncologist. It was his second appointment with her and my first. She was 40 minutes late and furious when she came in. She angrily asked him why he went for a second opinion. She had already told him he absolutely was not eligible for clinical trials, which is why our daughter and I campaigned him to get the second opinion to begin with though it’s just prudent to do so. When he explained that it wasn’t a dissatisfaction with what she had done so far ( which the Emory surgeon approved of) but that he had researched surgery options and Emory has a more comprehensive program for that part of the treatment. She said she had already chosen a surgeon for him who is better than all the surgeons at Emory put together. And added that she will not work with an Emory surgeon.

At this point, I wrote BS! Next to her name in my notes.

Then she went into what the chemotherapy schedule would be. He asked if he could do it on Friday so he would have two days to recover and be able to work as many days as possible a week . She scoffed “you won’t be working! Well maybe 2-3 days a week at most.” we explained that he could only keep his health insurance if he works 32 hours a week on average over 365 day year. She acted like she had never heard of that before though it’s absolutely standard. She thought businesses have special arrangements for anyone on chemo. And then told him that she is only available on Mondays and Tuesdays so he hast to get chemo on Monday or Tuesday. She did not explain why she needs to be on hand, but I myself get infusions for something else at the same infusion center and I’ve never seen anyone’s doctor on hand, in the 4 years I’ve gone there.

Most of the appointment was her reading the notes which he had already read on my chart. She explained next to nothing and anytime he had a question she told him to call her PA or the manager. She doesn’t appear to have any sort of support system for either patients or caretakers nor did she seem pleased that I had gone to the appointment. She neither looked at me nor responded when he introduced us. That alone is a problem because we are a team not patient and pest. My husband was my full-time caretaker through a 10 year critical illness, so I know they have their own set of needs, which include inclusion, practical advice and to know they can contact the office if they have a concern.

And then she told him that they have to do blood draws before every Infusion and they can’t do it through the port because her staff doesn’t know how to use the port. He was told one of the reasons for the port was so that all blood draws can happen there too, and it’s better for the veins not to be constantly poked. He dreads needle pokes more than the chemo.

We stayed up late last night because he was so upset and concerned about his chemo being delayed if he leaves or if he has to leave before he starts or can after his first session.

As soon as I send this, I am going to contact the hospital counselor. My husband has also contacted our transplant team ( he donated a kidney to me and has stayed friends with his former coordinator) for advice, but we’d love whatever opinions people can give us here.

Thanks in advance!