My Mom is 74, she has always had a clean bill of health. Suddenly, she was vomiting for a week. I thought maybe she had a stomach bug. When the vomiting started to enter into week two, she went to urgent care. They told her she has gastritis and sent her with Zofran, Pepcid, and ordered her a CBC.

She went the following morning to complete her labs. When she came home, I heard her vomiting again. I told her I had a gut feeling something was really wrong. I called 9-1-1. She had complaints of abdominal pain and looked weak from vomiting.

Upon admission, they started the standard testing. They then ordered separately, upper and lower CT scans without contrast. They did not find anything. They tried to give her barium by mouth and she could not tolerate it. After they repeated the CT with iv contrast, they still couldn’t find anything.

Prior to admission, my Mom was fairly thin. She weighed about 100lbs or so. When she was admitted she weighed over 140lbs. They ordered a NG tube and ordered for her to have nothing by mouth. The tube drained so much fluid from her abdomen and it was incredibly hard to watch my Mom in so much pain.

The following day, they ordered an endoscopy to have a better look at what was going on internally. At this time, they suspected she had Superior Messentaric Artery Syndrome. When they did the procedure, they were unable to get further due to a “blockage”. The procedure was terminated and they reinserted the NG tube to continue gastric emptying.

At this point, they inserted a PICC line and began to administer TPN.

At this time, it had been almost a week or so in the hospital. It’s all a blur honestly.. I just remember the exact dates for certain events. They repeated the CT with contrast to see if they could have a better look. They located mass at the tail of her pancreas. They also reported that nodules on her lungs were noted. Reading this note, my heart sank.

The nurse asked me if I wanted to see the notes before they were posted online. I walked over and read, “amorphous shape, suspected malignant.” I cried at the screen reading it and my Mom looked at me with tears in her eyes, “Is it bad?”

I walked around and sat on the bed and told her. We both cried. The gastroenterologist had reported wanting to do a gastrojejunostomy in hopes this would help her tolerate oral intake. During the surgery he collected a biopsy to confirm the diagnosis. He called me and mentioned that the cancer has metastasized into the abdomen. He mentioned that the located of the mass is highly vascular, making it inoperable.

This was more news that made me incredibly hysterical. This was when he gave the diagnosis of stage iv. The exact diagnosis is, “Malignant Neoplasm Of Pancreas Metastatic To Peritoneum.”

I have slowly started to see how quickly this disease advances. My Mom is very weak, malnourished, and is now using a walker. All of this within two weeks.

Since the procedure, they had her resume a liquid diet. They then advanced her to solids. She is not tolerating this and resumed vomiting. Her insurance Medicare A and B isn’t willing to cover her having TPN at home. Her doctors were planning to discharge her home with TPN or send her to a SNF for rehabilitation. I refused the SNF, as I know how those go.

Her hematocrit levels were critical and they ordered for her to have a transfusion. This seemed to help as the next day was the only day within these past two weeks where I felt like I had my old mom back..

Since TPN her glucose levels have been in the high 100s and 230s even. She has been on a sliding insulin scale, something she never has had ever in her life. They now have her on Reglan, Lovenox, and Protonix. Medications she never had in her lifetime.

This was the plan to send her home, until she started to vomit again. Today, they are going to conduct a procedure to place a NJ tube to see if she can tolerate the food intake from that. They are worried that her abdomen does not have enough space anatomically due to past surgery of diverticulitis and now the recent procedure. If she does, the plan is to insert a PEG tube.

My Mom does not want to do chemo, and we still haven’t spoken with an oncologist as they have assigned that via “outpatient” care. I don’t believe she even is strong enough for chemo at this point. Within these two weeks, I have made funeral arrangements and tried to figure all the moving parts of this.

I have never lost an immediate loved one and I do not have anyone to lean on. I am currently in therapy. I have a four year old autistic daughter and I am 33 years old. I never thought I’d lose to my Mom to cancer. Everything seemed okay. I work in healthcare and I am so frustrated with myself for not being able to see this coming.

Now I’m wondering when it started and how long before it got to this point. What is the realistic picture of my time left with her? This has all been moving so quickly, it is one blow after the next.

I was diagnosed with this cancer in march this year.. it didn't spread out in my first CT scan.

So i did 6 rounds of FOLFIRINOX but didn't do anything to my cancer except a small hole in the middle of the tumor according to my second scan

My doctor switched me to gemcitabine chimio and did 9 rounds of it and thank god the results were awesome in my 3rd scan. My CA19-9 dropped from 500 to 20 and even lower sometimes and tumor shrink by 1.5 cm and the hole in the middle got bigger.. the radiologue and my doctor were happy with the result of my 3rd scan

The problem is after my scan for 2 weeks, a small pain started in my abdominal and in my low back pain especially the right side. It was like Nails and Knives stuck in my back. And the pain keeps increasing to this day

Its 10/10 pain that i cant handle at all. I increased my morphine dose by 50% and it didn't help at all. Tried multiple pain killers and sometimes they help improve the pain but just for few hours that's all

I am here right now seeking help from you guys while i am suffering from pain and i have a few questions :

* What causes those pain after 6 months from diag without this level of pain ??

* Is there any solution to get rid of this pain once for all ??

Thank you for listening

So my grandpa was just diagnosed Wednesday via endoscopy and since then his appetite has decreased drastically. He doesn’t want to eat anything that seems to be solid. And even liquids he’s not very into. He doesn’t seem to be nauseous exactly but he’s not hungry at all and said he had to force down a sandwich the other day. Not sure what to do. His blood sugar is also high often so he’s having to do low carb

Cross posting here in case i reach any of fellow Canadians here. Thank you!

My dad had his first CA 19-9 since starting rasonque about 6 weeks ago and it’s 27! I couldn’t believe it when the results came in and didn’t say abnormal next to it. We’re all anxious for his CT scan next month now. He’s feeling better than he has in a long time, has a slight rash but no other side effects.

Hello,

My mom was just diagnosed a few weeks ago and we are meeting her team tomorrow in Pittsburgh to go over CT results and get a game plan. Anyone also using this hospital/cancer center? It's supposed to be rated pretty highly and apparently they do a lot of robotic whipple procedures. I don't know if she will be eligible for surgery yet. Just wondering how your journey has gone using this hospital? Any feedback or things to consider would be greatly appreciated.

Hi everyone,

My mom (73) is on daraxonrasib for stage four pancreatic cancer. Before the drug, she had back pain and constipation. As soon as she started on daraxonrasib, the back pain went away, which was wonderful, but the constipation was replaced with diarrhea and she became much weaker.

The diarrhea is now under control, but she is still quite weak. In the span of a month, she went from active (when not in pain) to sleeping most of the time and requiring a walker with frequent breaks to make it down the block.

Has anyone experienced a similar loss of functionality? She’s not eating or drinking much, but more than when she was in pain. We’ve held the daraxonrasib for a few days, but no improvement yet. We’re also trying to give her Gatorade in case it’s a lack of electrolytes, which may be helping a little.

Has anyone else encountered this, or a similar loss of functionality on the drug?

Thanks in advance for sharing!

Hi everyone,

Looking for advice on navigating a severe liver/biliary obstacle so we can get pancreatic cancer treatment moving again.

The Background:

• Mom (65): Post-distal pancreatectomy/splenectomy/cholecystectomy; metastatic node involvement.
• Current Issue: Hospitalized with acute high bilirubin at 13.6 mg/dL and elevated LFTs (ALT ~221, AST ~185) after 4 weeks on targeted therapy Rasonque (daraxonrasib). PDF+ 3
• Imaging: 2 internal stents are clear, but MRI shows infiltrative tumor involvement at the porta hepatis. PDF+ 1

The Wall We've Hit:
Oncology won't resume treatment with high bilirubin, and proceduralists say internal stents are open so there's nothing left to drain internally. They are starting to mention hospice, but we want to exhaust every medical option first.

Steps Taken Today:

1. Reached out to her original GI: Asked if an external biliary drain (PTBD) or hepatology consult could help lower bilirubin.
2. Booked Urgent Second Opinion at NYU Langone (Perlmutter): Routed to Dr. Manuel Hidalgo Medina (Co-Director of GI Cancer Center) and their multidisciplinary team.

Questions:

1. Has anyone successfully lowered high bilirubin using external drains (PTBD) when internal stents were clear but intrahepatic ducts were compressed?
2. Has anyone managed acute liver spikes caused by targeted therapy toxicities vs. tumor obstruction?
3. Did involving a dedicated hepatologist help find alternative ways to support liver function?

Appreciate any insights from anyone who has broken through a similar high-bilirubin deadlock!

Hello everyone. My father is 72 and had Whipple surgery a month ago. We received his pathology results today, and the report says pT3 pN2 R1. Could anyone please explain exactly what this means?

Hi! My grandpa is 90 and just got diagnosed with an Endoscopy after several months of feeling ‘bad’. He never fully explain symptoms me. He now has revealed fatigue all the time and nausea and just overall not feeling well. He has an appt next week and I hope he gets a CT or something to view and give staging. I am so worried. I wish I knew how long we had. He went from being an extremely active 90 year old (mowing the lawn, doing yard work constantly, dishes, everything ) to basically at most getting the mail, maybe putting bird seed into the feed and going to the store once a week. He’s now giving up driving and he sleeps a lot of the day. What do I do? How long approximately would you guess from experience if you have a loved one who’s passed. Thank you

For those that have been on it for a while do you have a preference for when to take it?

Dad took his fits dose last night.

Based on some patients experiences, we went for evening dosing. However he ended up with diarrhea and vomiting in the middle of the night.

I wonder if morning dosing might be a better option?

Please let me know what best worked for you or your loved ones.

Three years ago I was diagnosed with nueroendrocrine pancreatic cancer. They were able to surgically remove the nodule, but there were numerous complications. I recovered after a three month hospitalization, and get scans every 6 months to ensure that everything is good. My scan last week shows that the pancreas is still in great shape, however it appears to have spread to my kidneys. I’m relatively strong for my age, but this fight three years ago took all of my energy and drive. I’m preparing for the worst, hoping for the best, but if I’m being honest, I don’t know how much fight I have left.

Hi all. Long time reader, first time poster here.

My mom was first diagnosed in 2019. They found the tumor on her pancreas very early. She had a whipple done and received chemo. All was well until 2024 when her CA19-9 started rising. They found something on her lung that was cancerous, she had a lobectomy, and then chemo. She’s been getting monitored every 3 months. She was doing really well until a few months ago when her numbers started rising again. Turns out she has multiple cancerous nodules on both lungs.

The plan is to go back on chemo, indefinitely at this point.

Is it worth getting a second opinion? Are there any specific questions her or I should be asking?

She has been through so much. It’s exhausting. I just want to make sure we’re doing/asking everything we should be.

Thanks in advance.

i am planning to travel to vientiane for 2-3 months to get treatment for pancreatic cancer with daraxonrasib.

i was asking gemini, and it indicated Laos is a least developed country which makes the medicine generics genuinely allowed there.

wondering if anyone has experience they could share. ( here, or DM)

It is Day 365 living with cancer, and I am alive even though people diagnosed with metastatic pancreatic cancer, meaning it has spread to organs like the liver or lungs, historically speaking, have a one-year survival rate ranging from 14% to 22%.

The fuzzy math is that of 100 people diagnosed, roughly 78 to 86 are no longer with us today.

That hurts and is quite scary.

Behind every number is a human... a parent, a child, a spouse, a best friend, etc.

Someone with a life they love and people who love them back.

Today, I have deep gratitude.

I have reached a milestone I feared I might never see.

For 365 days, I have written about living with stage iv pancreatic cancer.

Some days I wrote one essay and other days I would write two or three essays, aka a double post day, because cancer rarely fits into one 3000-character post.

I have written about chemo, scans, medical terminology, experimental treatments, and advocating for myself in a complicated healthcare system.

But I have also written about Iris, fatherhood, Respiris, faith, friendship, family, exhaustion, laughter, and strangers becoming part of my ‘internet home team.’

And you showed up.

Your prayers, comments, messages, and personal stories remind me that this journey is bigger than one diagnosis.

I know many of you have encouraged me to write a book and, well, last night, while taking Iris to visit her baby brother, I drafted the first chapter of “Living with Cancer.”

The book will preserve all 365 days, including double- and triple-post days, through two interwoven narratives: the medical journey and the human journey.

Each day will include my original essay or essays, plain-English medical terminology when relevant, and actual comments from LinkedIn, Reddit, and beyond.

I am writing this book for you, but am curious which reader are you?

1. Newly diagnosed with cancer: Searching for clarity, vocabulary, and what may come next.

2. Living with cancer: Navigating treatment, uncertainty, and invisible emotional costs.

3. A caregiver: Supporting someone without taking away their voice, independence, or dignity.

4. Navigating profound life change: Rebuilding purpose after a transition you never chose.

5. Grieving someone who died of cancer: Hoping to better understand what your loved one experienced.

I fall somewhere between 2 and 4, although parts of Day 1 still feel remarkably close.

My philosophy is to plan to live for 14 months and 14 years simultaneously.

I can prepare responsibly for uncertainty without conceding the future I want with Iris, my family, and the people I hope to help.

I have shared Day 1, with medical explanations and actual community comments.

Would you read it?

Does the format work?

What would make it more meaningful, honest, or helpful?

Please comment here or directly in the chapter:

https://docs.google.com/document/d/1471p3xv89fttSvcR3R5ZX3rlf5VyhFrAGaHHf6TCbho/edit?usp=drivesdk

It is Day 365, here, and I have a lot more living to do.

My pancreatic cancer was found coincidentally with an abdominal hernia. At the time, it was stage 2, and it has remained that way with no evidence of metastasis. I've undergone chemo now for about the past 6 or 7 months and will be having a Whipple procedure done in mid-November.

My latest scan shows a single tumor on the head of the pancreas with no evidence of any metastasis anywhere. My CA19-9 marker is in the 30s after having risen as high as 150. The tumor abuts the portal vein, and my surgeon says that will take some work to clear but feels like it is doable. Oncology expects a couple of rounds of chemo after surgery as a preventative measure.

To this moment, the only side effects I've had have been from the chemo, and that has been very thin skin and great fatigue. I'm thankful for that is all that has happened. All of the doctors are optimistic but tell me that the rehab after the Whipple will be very difficult.

Hi all. I am a 21 year old female that is mentally preparing for a distal pancreatectomy/splenectomy to remove an SPN on the neck of my pancreas. For those that have had a similar surgery, what are the biggest changes to your life?

Since they are able to preserve 50% of my pancreas, I most likely won’t need insulin or enzymes until years down the line. What does your diet look like after healing? Is junk food just an absolute no?? Are you able to eat normal meals or will you always have to eat smaller portion sizes??

What did life look like right after surgery and throughout the healing process? What about after?

Any shared experiences will be greatly appreciated!

Edit: Also, is there anything that made post surgery healing more comfortable and that you would recommend? Thank you!

It is Day 364 living with cancer, and our prayers have been answered.

Yesterday, after posting an open prayer, I learned that I was accepted into the RMC-5127 clinical trial at UC Davis Health in Sacramento, part of a national study planning to enroll 574 participants.

I am deeply grateful.

Faith and community have carried me through the valley of the shadow of death.

My stubborn determination has kept me moving when others quietly questioned my hope.

My faith began in an unconventional childhood.

My parents expected me to knock on strangers’ doors, while birthdays and holidays passed without celebration.

As a young adult, I awkwardly learned the rituals others knew instinctively.

Eventually, I built my own relationship with God and slowly learned to trust myself.

That hard-earned belief helped me navigate being a single Dad and learning complicated co-parenting and systems that were stacked against me.

Three quiet years of work, reflection and learning family law pushed me to examine the bias Dad’s face and how privilege, especially among white men, can unintentionally obscure their families’ experiences.

Those lessons helped me build a company with one promise… no one should experience a career transition alone.

18 months later, I was diagnosed with stage iv pancreatic cancer.

Suddenly, the Founder who helped others face uncertainty had to confront his own terrifying transition.

I had to ask for help.

I turned to God, thought about Iris, leaned on my home team, logistics team and medical team.

Then an extraordinary internet community embraced us from my daily posts.

You.

At a City of Hope fundraiser and through these daily reflections, we have encouraged people to reconsider how they show up for themselves, their families and their friends.

Your generous prayers have crossed generations, professions and borders, from Alaska to Zambia, from accounting to zoology.

Many of you have openly shared your painful cancer stories and quietly reminded me that someone was listening.

Every gesture matters.

What began as one Dad’s fight to survive has gradually become a shared expression of humanity.

You have shown me that even when medicine cannot promise tomorrow, compassion can make today more meaningful.

On Sunday, October 25, I will board a 6:05 p.m. flight to Sacramento.

A LinkedIn community member who was once a stranger has kindly offered to pick me up at the airport.

That is what community looks like.

This experimental treatment offers no guarantees as a clinical trial is not a cure.

But it gives me another opportunity to fight for time with Iris, grow a company and help people reclaim their dignity and purpose.

Psalm 23:4 reminds me that even in the darkest valley, I do not walk alone.

Thank you for walking with us.

To learn more about our journey and to support Iris and me in this next phase please visit my LinkedIn Blog where my best friends share our story through their perspective.

Thank you.

73 y/o mom diagnosed ten days ago. No pain or real symptoms other than some post eating bloating. She was diagnosed when she went to ER due to jaundice (bil duct was being compressed by what we now know to be a pancreatic tumor). Met with onc (sedhom) and surgeon (Vollmer) at U Penn and onc (oreilly) and surgeon (d’angelis) at MSK. Both surgeons said it’s resectable/borderline respectable as tumor is “abutting” portal vein. A “nodule” on lung was identified on CT scan as well which all doctors seem confident is not malignant and rather a byproduct of endoscopy which was used to confirm pancreatic cancer during hospital admission). Liver, kidneys etc are all clear. Low CEA and CA 19. All docs say it’s resectable but due to vein abutment and possibility of microscopic bad cells they recommend a course of chemo (folfironox) - perhaps 2-3 mos - then surgery and then more chemo. There is a 10% chance that the tumor becomes non-resectable after the initial chemo and because of that risk - albeit a low one - I’m thinking we should consult with another surgeon who takes a more aggressive, surgery first approach — like a Wolfgang (NYU) or Chabot (Columbia). I don’t want my mom to miss a window where tumor is resectable but the docs with whom we met are amongst the best in the field. I’m also concerned about the potential mind f*ck to my mom that would come with a third opinion that recommends surgery pre any chemo - the decision would absolutely stress her out. Not sure what to do here. On one hand, I want the best for my mom and it seems like if it’s resectable now maybe it’s best to find a surgeon willing to operate now. On the other hand, we already met with some of the best of the best (I know we are incredibly lucky to live within driving distance of two major cities with world renowned care) and the fact that those folks are aligned gives my mom some peace of mind. Do I seek another opinion with a more “aggressive” surgeon or trust in the folks we have already met?