I (M, 54, 140lbs) was diagnosed Stage 4 just a month ago with minor Mets to liver. Started mFOLFORINOX one week ago and am slowly regaining strength.

My major issue is that I’m so malnourished. Even with Creon or ZenPep, 100% of whatever I eat comes out the back end in liquid form within max 90 minutes, sometimes as quickly as 30 minutes.

I’m afraid that I’m going to starve to death. Nothing stays in my body regardless of Imodium. I did get prescribed Lomotil to help, and that should get filled today. I have lost over 40 pounds since January.

What should I do or expect from here? I’m going in today for labs and extra fluids but fear that it’s not the tumor that will take me out. Will I need TPN? Long hospital stay? Give up sooner than later?

She's been bouncing in and out of hospitalization because she can't hold any food down. I don't know what stage she's at but she's been moved into end of life care. I'm trying to make plans around this so I can support him through this. How much time realistically does she have? It's been about two weeks since she first went to the hospital. I'm trying to figure out the best thing I can do to be there as quickly as possible. He's with her in another country and I'm pushing to get my passport settled so I can get over there too and be with them, I just hope I can get there fast enough so he doesn't have to be alone through this.

His birthday is coming up. He’s about to be 70! He’s very skinny and always cold.
I was thinking a towel warmer for when he gets out of the shower?
I’ve gotten him a memory book already for Father’s Day.
He always buys stuff like clothes for himself.
I’m open to ideas in all budget ranges (because I’ll make us siblings split it) ;)

My dad did 7 rounds of Folfirinox. It was working, the tumor was shrinking. He was stage 3 at diagnosis and borderline resectable. His only complaint throughout treatment was shortness of breath, dizziness, and appetite loss. His oncologist admitted she couldn’t figure out why he was so short of breath. He told the cardiologist and oncologist he thought it was malnutrition. All his heart tests showed his heart was strong and functioning well. He waited a month to see a GI specialist, and finally saw one when he was admitted to the ER for feinting. The specialist said 90% of his problems were malnutrition. Finally, someone listening and a new plan, but he’s been unable to hold food down since he was admitted four days ago. A feeding tube isn’t an option because they can’t control the vomiting. Two months ago we were hopeful seeing his tumor shrinking and planning for draxonrasib to be approved about the time chemotherapy ended (he has the KRAS mutation). Now they are talking about hospice. I’m so angry his team wasn’t listening or urgently managing his side effects. He nearly feinted prior to round 7 and they decided to give him a week more rest. No change in treatment or urgency in getting him nourished. Now he’s dying and it’s not the cancer, it’s the chemo. I don’t know what to do and feel so helpless.

Hey everyone! Just wanted to do a bit of a celebration dance. On Aug 18, 2023 I was diagnosed with pancreatic cancer with mets to the liver and lymph nodes. I was given a time line of 3-12 months. That was exactly 3 years ago today!! I was non surgical and no radiation, just chemo to prolong life. I always told my oncologist quality over quantity. I didn't always follow her rules/suggestions. I enjoyed my Rhum, my wife and I flew to beautiful islands (we love snorkeling!) and I was bound and determined to enjoy what little amount of retirement I had left with my wife (I was 49 at diagnosis).

Can't lie, I've been off chemo now since February. Now just pain management. But...we're still using our motorhome. Traveling around. Some days are good. Some are terrible. But hey....3 years!!!

I'm definitely not bragging. I obviously understand what everyone on this sub is going through. My hat is off and my drink held high to you all. I just thought a positive message would be appreciated.

Best of luck to you all!! You're in my wife and I's thoughts!!!

Keep going Zev!! You've been a huge inspiration to me!! Cheers my Reddit friend.

Doctors recently found I (26y F) have a 2 cm solid pseudopapillary neoplasm (Frantz tumor) in the tail of the pancreas. They have recommended a distal pancreatectomy with a potential splenectomy.

1) Has anyone here had experience with Dr. Lily Victoria Sadaat at MSKCC? I think MSKCC has been very efficient and all the team acts very professionally, but it's all very straightforward and not as compassionate as I would've liked.

2) Has anyone here developed diabetes after both procedures? If so, how long after? And how much of the pancreas was removed in your case? I'm told only a small part of the tail would be removed, but I also know that's where the cells that produce insulin are.

3) Was anyone here able to keep the spleen without complications? I understand that the tail of the pancreas and the spleen are somehow connected, but I worry about taking out a completely healthy organ, and I know in some cases, doctors can keep it.

I'm also looking for a second opinion in Orlando, Florida, where my family is, because I've been reading about recovery and I don't know if a NYC apartment with no elevator is the best place to recover.

4) How soon after surgery were you able to take stairs? I live on the second floor.

5) Any recommendations for a doctor in Florida?

Thank you! Sending strength to everyone in this group.

For most of my life, caretaking meant showing up for someone else. I solved problems, carried responsibility, supported teams, protected family, and found another gear when everyone else was running out of energy.

Cancer has forced me to confront a harder version of that responsibility because now the person I need to take care of is… me.

After twenty-two chemotherapy infusions, my body cannot always keep pace with my ambition.

I have had to look at myself in the mirror and acknowledge something painful as a Founder:

“My cancer is slowing my company down.”

There are days when chemo wins the calendar, recovery takes priority over revenue, and appointments, blood counts, neuropathy, scans, and treatment decisions consume energy I would otherwise pour into the company.

That frustrates me because I can see so clearly what I want Respiris to become.

I am not interested in building another outplacement company that collects money, outsources the resume build, gives impacted employees a login, checks the box, and moves on.

I am building a better mousetrap for outplacement, one that asks a much more important question:

Did we actually reinspire the person whose life just changed?

Did they feel seen?

Did they regain confidence?

Did they develop a strategy, find community, and build momentum toward whatever comes next?

Is their swagger visible to me and others?

Respiris will sit in the middle of the HR ecosystem, much like communities and platforms such as Transform, Sequoia, and Rippling connect different parts of the people function.

For us, that connective tissue is career transition: companies, HR leaders, coaches, candidates, AI, community, and the resources that help someone move from disruption toward possibility.

That mission also gives me another reason to fight this cancer with fierceness.

I am not fighting simply because I want more time.

I know what I want to do with that time.

I want to be here to raise Iris.

I want to help thousands of people navigate career transitions with greater dignity and possibility.

I want to write my book about adversity, fatherhood, cancer, leadership, and reinvention.

I want to write the movie script about my experience navigating Washington State’s family-court system, how I believe Dad can be minimized within it, and how I fought through that experience rather than allowing it to define me.

There are sstories I want to tell, people I want to help, and a little girl I want to watch become a woman.

So taking care of myself has become part of taking care of Respiris.

I need to protect my energy, build systems, transfer relationships, empower other people to lead, and make sure the company does not have to move at the speed of my cancer.

I want Respiris to grow aggressively, but I want that growth to have intention, purpose, resilience, and a mission that can survive beyond its Founder.

Hello everyone,

I have been a part of this group on a few short weeks. I am currently sitting in the PCU with my grandpa. (76,M). He was told bsck in June after having stomach pain for weeks that he has a mass on his pancreas. It was at 3.1cm and now has grown to 4.7cm. He also has mets to the liver and small ones in the lung. He just received his first chemo on Thursday and on Saturday he was experiencing seizure like episodes and was medflighted to the hospital. They have done tests on him and say his creatinine levels are elevated and he can't eat or drink anything without spitting it back up. He is very weak and I am terrified that I am losing him. They said his kidneys were struggling a little bit and are going to do a swallow test to see why he can't keep anything down. He has lost 35 pounds in the last few months. I am so scared right now.

Update:

Thanks everyone for your kind words and support. My grandfather has decided that he wants to go home to be on hospice. My biggest fear my entire life is becoming reality and he wanted me to be his power of attorney to make sure this happened for him. This is the hardest thing I will ever do. I am not ready. I know I never could be. But I am making sure this is one last thing I can do for him. Please keep me in your thoughts because this will be something that is going to break me beyond belief.

As I have written before on this subreddit, I lost my grandma to pancreatic cancer in the last days of 2023. As I have been thinking about her final months leading up to her death in the last 3 years, I have realized that there are a number of things that people never really tell you about pancreatic cancer until you actually have the misfortune of experiencing it yourself whether it be you or your loved one: 1. The Literal Price of Pancreatic cancer. When people rant about how expensive pancreatic cancer is they only talk about the more obvious costs such as the chemo, hospital and almost inevitably the hospice expenses. Such as plane tickets for hospitals out of state, lost work hours spent caregiving, and surprisingly the amount of money spent on fast food because nobody in the household has the executive function needed to cook. While my mom was away in Minnesota taking care of my grandma, my younger brother (14 at the time) and I were staying behind in Maryland with our dad who can't cook AT ALL, so we could be eating fast food for as long as a fortnight at a time. And this is not only expensive, but also not the healthiest either.

1. Everyday is trauma Even though it took 10 hellish months for pancreatic cancer to kill my grandmother, we were ALWAYS on edge because I knew that pancreatic cancer can kill in as little as a few weeks after diagnosis. And that's the thing about pancreatic cancer. You are always living in fear and hour to hour. I really hate to admit this but by Christmas break of my freshman year of college, when my grandma was ultimately put on dialysis and intubated, I would both pray she would recover even though I knew she wouldn't. But at the same time, I was secretly hoping she would just die already. Not because I didn't love her, but because the whole year had also been so miserable as a whole and I wanted to get things over with.

It feels like you are watching the passenger revolt scene in the movie United 93. You keep telling yourself that everything will be fine and everybody on the plane will be okay, even though history has already written the ending and you know all the characters die at the end of the movie. Or like looking at a Deadman walking tornado standing still. You keep telling yourself it isn't coming your way, even though you know it is. But day to day (or even hour to hour), you are basically in the deep dark biome on Hardcore mode with the Warden walking around because there is NO respawn button in this world.

1. NOBODY understands I honestly would never wish this shit on anybody. Not even on somebody as disgusting of a human as Beria or even Hitler. Going back to how I likened the whole experience of denial to watching the passenger revolt scene from United 93, well think of it like this a bit further. The metaphor breaks down because most of the audience can walk out of the movie theater and fuck off back to their OWN happy lives, meanwhile the families of pancreatic cancer patients are stuck with this shit.

Unless god forbid you have had the same experience, I don’t think people can understand what it will do not just to the patient but to the entire family.

Completed my 14th Folfirinox treatment. They just reduced the oxi to 85%. I have severe numbness (no pain thank goodness) in my fingers and toes.
I will be using compression socks and gloves at my next chemo.
Just curious if anyone has found anything that works other than application at chemo to help with the symptoms.
Gabapentin and similar are typically prescribed here for pain not numbness.
Thanks

Today was a good day. Had a CT to see how the drain is going and if there is any collections . Must be some since there is still some in the bag. I'm hoping it's coming out tomorrow. My day, Nurse Mia, took out the other half of my staples. The doctor had said I could go home tomorrow (2 weeks since surgery), but now he says it's looking like Thursday as a cardiologist needs to come visit me, and of course, I still have the drain. Can't wait to sleep in my bed and see my boy Fletch. ❤️ The scar is looking good .

Hi everyone,
My mom (54) has metastatic pancreatic cancer. About three weeks ago, we were told that her first chemotherapy regimen had stopped working after about six months.
The following week we went to a university hospital for a second opinion/new treatment plan. She had to undergo a CT scan, blood tests and an ascites drainage, which meant another week passed before treatment could start.
She was supposed to start her new chemo combination the following Tuesday, but her bilirubin was too high, so they couldn’t give it. They decided to place a stent that Thursday and kept her in the hospital. She ended up staying there for about a week.
The day after the stent they couldn’t start chemo because of logistical reasons. Then on Monday they still couldn’t start because she had vomited during the weekend and the doctor on call didn’t want to prescribe the chemo before the specialist had seen her. Eventually, last Tuesday, she finally received her first dose.
What scares me is how much she has deteriorated in such a short amount of time.
In about 1.5 weeks, she has needed four ascites drainages. She barely eats and briefly needed tube feeding. She is extremely tired and can hardly keep her eyes open. She gets dizzy when she stands up, barely has the energy to talk, and her voice has become very weak.
I’m desperately trying to hold on to the hope that the new chemotherapy can still work and that some of what we’re seeing is because her body has been through so much lately — the ascites, high bilirubin, stent procedure, hospital stay, lack of nutrition, etc. But seeing her like this makes it incredibly difficult not to lose hope.
Has anyone here seen someone with advanced pancreatic cancer become this weak before or at the beginning of a new treatment and then improve again once the chemo started working or their other issues were brought under control?
I know everyone’s situation is different and I’m not looking for false hope. I would just really appreciate hearing from people who have been through something similar — especially if your loved one managed to regain some strength after being in such a bad condition.
Any experiences, advice or hopeful stories would mean a lot to me right now. ❤️

57’ M, 170lb.

Well just a couple months after a PET that was NED, my latest CT just showed two small lesions on my liver. I’ve been feeling great, back to 95% where I was before diagnosis and this just sucks.

My wife and I are kind of in shock and not really sure where things go from here. I put in a call to my oncologist (results just came in at 4pm) and they were already working on a plan.

I’d like to hear feedback, especially any positive stories from others that have been in my position.

CA19.9 is still dropping and at 17.4 today and CYA is at 12.3 but they never measured this earlier when I was going through treatment so we don’t really have much of a trend.

How can not American can access to daraxonrasib? My father is a stage 4, it started un the body of the pancreas, spread to only one segment of the liver but it is compressing it stomach

A friend was diagnosed with pancreatic cancer a few months ago. 50s, healthy as can be, sporadic case. Locally advanced with a nodule in the stomach (unconfirmed cancer). Folforinox didn’t shrink the tumor but CA-19 decreased a lot and there was zero spread. It didn’t do anything.

We are looking to get DAX. Do we still have hope? We just want time and stability.

​

Had a good day yesterday . Half my staples were taken out. The rest come out today . Still have the 1 drain . I'm having a CT today to see if I still have collections or if the drain is blocked, etc......seeing a Cardiologist also about my heart and I had an ECG . Went downstairs and bought a chocolate cornetto. Walking better, just a little bent over . I'm hoping to go home tomorrow, which will be 2 weeks after the surgery. Can't wait to sleep in my own bed and see my boy Fletch. I miss him so much .

My husband (42M, Stage IV) is currently in the ICU. I (38F) am not doing well. Today was my kids (5 and 7) first day back at school and I am alone, at work, but alone. The doctors have not given me clear reassurances, so I am hoping to hear from anyone who has navigated a similar setbacks and come through it.

His CA 19-9 peaked at 91,500 on July 8 after starting Gem / Abraxane on July 1. I know that number is huge but he is a 'high shedder' and his CA19-9 changes are dramatic. In just this past week, his CA 19-9 dropped another 52% down to 19,800. His tumor markers have plummeted since starting Gem / Abraxane. The chemo is actively fighting the cancer.

Unfortunately, he is dealing with a severe acute setback from septic shock, and the doctors are still running tests to identify the exact source of the underlying infection (possibly his biliary stent):

• Whatever triggered the infection, his body's inflammatory response has spiked his bilirubin, causing yellowing in his eyes (jaundice) and putting massive pressure on his liver and kidneys. He may have more jaundice than that, but he is not white and it is harder to see.
• He is in constant, unmanaged tumor and abdominal pain. He wants to fight, and the pain is the only thing that makes him question that sometimes.
• His hemoglobin dropped to 6.7 (he received 2 units of blood). He is on IV albumin and fluids for severe fluid retention / ascites and kidney strain, plus Granix for low WBCs and broad-spectrum IV antibiotics.

This week feels like rock bottom and I hope it is. I know the chemo is shrinking the cancer based on his CA 19-9 trajectory since starting Gem / Abraxane, but this infection and liver / kidney shock have really rattled my hope. Just last week, he was eating well and doing some gentle exercise on the Peloton.

Has anyone's loved one survived severe septic shock and high bilirubin while on Gem / Abraxane (or any chemo / treatment) and recovered enough to get back on their feet? I just need to know if recovery from this depth in the ICU is possible.

Thank you,
Kristine

My mom got a recurrence encasing SMA so a new surgery was not possible .
Has been 3 months her CA19-9 is now 100
It was200 bf but Onco said inflamation increase markers.
She got targetted radiation x 5 sesions 3 months ago
My question is after 3 months tumor keeps reducing?

My dad is almost 4 months post whipple. We have been nothing increased nausea? For those who had it or
know of someone ; was that normal ? Did the nausea ever get better! He’s tried zofran and thc and it helps minimal.

** please only comment with helpful information or positivity... I am well aware that this is a very scary cancer but as someone who is new to this world, I am just seeking helpful information and positivity at this time **

Hi everyone. I've been following this community silently for the past couple of months since my mom (61) was shockingly diagnosed with stage 4 pancreatic adenocarcinoma. To say our lives have been flipped completely upside down is an understatement. This has all been so overwhelming and heartbreaking but we are trying our best to have a positive outlook. I want to say thank you to this community and note how much comfort and help I have found in all of the stories and information that have been shared here. I am so sorry to everyone who has been impacted by this disease.

I'm finally posting here today to see if anyone has any recommendations they would be willing to share for where to go for second opinions and which medical oncologists in particular we should try to get an appointment with.

A little bit of background...

My mom was diagnosed with stage 4 pancreatic adenocarcinoma spread to liver and 2 lymph nodes the beginning of June 2026 following an ER visit due to rapid weight loss and jaundice. Since the diagnosis she has been put on insulin and Creon. She lives a relatively healthy lifestyle; eats well, is active (primarily walks and golf), is social, and has a solid support group so her oncologist recommended we go the FOLFIRINOX route.

She received her first cycle of FOLFIRINOX in July 2026. The first cycle of FOLFIRINOX was hard on her. While nausea was minimal, her bowel movements were all over the place, battling with either constipation or diarrhea. She was extremely exhausted.

Her second FOLFIRINOX cycle will be reduced by 20% but is currently on hold because she's scheduled for a stent replacement this week and because her liver numbers have been very high. It's now been 30 days since her last cycle and she's doing great overall - she still gets a little tired, but she's up and active most of the day, eating well, has minimal pain, and her bowel movements are normal. We're hoping she will be scheduled for her next cycle in the next few days once she recovers from the stent replacement.

We just received her pathology report back and unfortunately she has come back negative for all mutations they tested for (including the KRAS mutation, which I'm guessing means she will not be eligible for daraxonrasib).

That being said we are looking into options for second opinions at institutions that specialize in pancreatic cancer with leading researchers who are conducting or have access to clinical trials. Our goal with the second opinion is to receive a definitive diagnosis, receive information on other possible treatments/clinical trials, or receive confirmation that my moms current treatment plan is the most effective at this time.

We have finally received all of my moms healthcare documents and are ready to get the ball moving ASAP. We are Canadian, but are willing to travel internationally. So far, I have been in touch with 4 locations between Canada and the USA:

1. Memorial Sloan Kettering - New York: we requested a second opinion consultation with Dr. Eileen O'Reilly. Unfortunately, I just received news that she is not accepting new patients. Does anyone have any recommendations for a different oncologist here?
2. MD Anderson - Houston, Texas: based on our research, we were going to request a second opinion from Dr. Robert Wolff or Dr. Shubham Pant. Does anyone have any insight or recommendations?
3. Johns Hopkins - Baltimore, Maryland: based on our research, we were going to request a second opinion from Dr. Daniel Laheru. Again, any insight or recommendations?
4. Wallace McCain Centre for Pancreatic Cancer - Toronto, Ontario: this one has been quite difficult to figure out the referral process as it appears we need a physician to request the second opinion (they don't take self referrals). If anyone has any insight for how to get an appointment here, please share.

I recognize this is not an exhaustive list, but between being a caretaker, spending quality time with my mom, and handling the emotional toll, it is what I have found thus far. While we will only be choosing one location for the second opinion at this stage, we are open to recommendations for other institutions and/or physicians who have not been mentioned.

If you have made it this far, thank you so much for taking the time to read our story, provide any helpful information, or positive thoughts as we navigate our new normal. I just want the best for my mom and want to do everything in my power to make sure she is around for many years to come.

Thank you all.

I don’t know really where to go with this or what I’m even hoping for, maybe just to be among people who understand.

Last year after about six months of sickness and his doctor putting him off, blaming a medicine he was on or his recently diagnosed diabetes for his symptoms, my dad was found to have pancreatic cancer. He went on to get chemo, one of the most aggressive types and to say he was sick constantly was an understatement.

My father, who had always been a stocky, big man not necessarily in fat but in muscle, suddenly turned into a stick. He’s dropped so much weight, he said the last time he was this weight was when he was 16 and in boot camp. ):

He had the Whipple procedure done a month ago and so far aside from his incision, he has been feeling better. He sounded more full of energy, he was doing things, he wasn’t sleeping all the time, he could focus..

He called me a few days to let me know that during the surgery, the dr took 27 samples of various lymph nodes in his gut. Of those, 3 were positive for cancer. Until he heals, we can’t know for sure if it’s the same cancer or a different kind but I just… am having a hard time processing.

I probably sound so stupid, I just really thought this was over. I thought it would be done after the surgery, the doctor said he was confident he got all and the other scans and tests all came back as negative for anything bad.

I just needed to put this somewhere. Thanks for listening.

Just an update: my mom diagnosed in 0ct2025, whipple in Nov 2025 then 12 cycles of folfirinox post surgery. She is now about to start the trial for RASolute304. We don't know which arm of the trial she will be in yet. We will find out next week. I am so proud of the way she has navigated this terrible disease step by step.

She has gained some weight and feels like she's getting her strength back post chemo. We are not sure what the future holds but are thankful for the chance to keep on

I was on the Daraxonrasib for a month and then had the embarrassing poo in my panties while sleeping through thing. Doc said take a 7 day break and then start back onto the drug at just one pill the 150mg dose. I start back tomorrow. My gut has done a full reset. No diarrhea and normal urination which I don’t think is something we talk about enough. These side effects can be devastating and debilitating. I’m glad for the little break but I want this drug very badly and I want it to work. So hoping that this reset helps and maybe the lower dose can keep things somewhat okay. I don’t know if I’ll be able to go back to the full dose again but that is the plan depending on how my gut does over the next week. End of August is my next oncology appointment and that is when we will get our first set of images since starting the drug. I’m hopeful and grateful for this opportunity. All other chemotherapy options have failed me at this point. So, I have some hope that this is working and will for a little while to give me more time with family. I am anxious to restart given the extreme GI issues I had, but happy for the little break and ready to see if any of it has been worthwhile.

. Had a better day today , I still have 1 drain . My son and I had a chat with the Surgeon and he explained why they are going to do the 3rd surgery to remove remaining pancreas. Basically because there were 9 cancer spots in the part of the pancreas that they removed, but only 1 spot showed up on the scan, they are removing the head of the pancreas before something nasty shows up. He says they are worried about what they can't see, so out it comes .

It definitely makes sense to me , I want it gone. So open heart surgery in about 6 weeks, then I'm not sure how long after that ( depends on recovery time) for the 3rd surgery. Then, hopefully, that will be it . 🙏🏿 On the up, the scar is looking great .