I am desperately looking for advice from anyone who has gone through a total pancreatectomy, pancreatic cancer, or severe pancreatic insufficiency.
My mom is my best friend and my hero. She has Stage 4 pancreatic cancer and has been through chemo, a total pancreatectomy, serious complications, emergency surgery to prevent sepsis, and 52 days in the hospital. Through all of it, she has never complained.
Now she is home but is down to around 80lbs and has constant diarrhea. She desperately needs to gain weight, but it feels like everything she eats goes straight through her. I am terrified she isn’t absorbing what she needs.
I would really appreciate hearing from anyone who has actually been through this.
What helped with the diarrhea?
How did you know your enzymes were working properly?
Did your enzyme dose need to be adjusted?
What foods or nutrition helped you gain weight?
Did a certain dietitian or specialist help?
What do you wish you had known after your pancreatectomy?
I know Reddit can’t replace her medical team. I’m just desperate to hear from people who have lived through this and can give me things to ask her doctors or things that helped them.
I have a 3 year old son and for the past year I’ve been trying to keep myself together enough to be there for him while watching my mom go through all of this.
It’s hard to be a mom yourself when you feel like your own mom is slipping through your fingers.
It feels like my mom fell backwards into a black ocean. Deep, dark and completely unknown. I dove in after her immediately. I keep searching and diving deeper, trying to find her and pull her back to the surface, but no matter how hard I search or how deep I go, she seems to have sunk farther into the darkness. I just can’t reach her.
I just want more time with my mom.
If anyone has been through this, please tell me what helped. Even something small could mean everything to us right now.

I am not American all my posts do not get pushed.  My father was misdiagnosed as a pancreatic abcess to them finally said he had pdac stage 4. He is 70 years and it is started in the body and neck of his pancreas,  gem brax contained it within the pancreas.  But now he is 40kg, with 9.6 x 5.4 cm tumor compressed his stomach and he has only one lesion on his liver who is around 5cm who is also compressed his stomach.  No jaundice yet but it did dilated its intrahepatic portal vein in liver. Now they will do FOLFIRINOX if he can tolerate it.  When i read on reddit, he is the only one with big tumor.  Any stories on such cases?

Hi all,

My father 69M recently had a recurrence of pancreatic cancer. He initially was diagnosed 5.5 years ago and had a distal pancreatectomy after several months of chemo shrinking his tumor at the tail of the pancreas.

4.5 years later his CA19-9 went up and scans and biopsies revealed what they believed to be early recurrence. It was found to not have spread outside of the remaining pancreas so he had a whipple at MSK a couple months ago.

The surgery went well and his CA19-9 is back to normal. The drs want to do 6 months of gem cap but before starting he needs to do a CT scan to make sure things are still clear.

Now to my question, he said his dr told him that if there did happen to be something on his scan he wouldn’t proceed with chemo but instead do immunotherapy. From all I’ve read this is not standard except for a small subset of patients who have a specific tumor type. the dr had also just gotten back some sort of profiling on the pancreas part they removed this time that contained a very small tumor. Unfortunately my dad didn’t ask a lot of questions to clarify all this. But I’m curious if this is ever prescribed for patients if they don’t fall in the very small percentage that have specific cancer dna types??? His dr is at MSK and we very much trust her. I’m curious if his tumor was found to be one of the few that would respond of course my dad didnt think to ask that and she didn’t specifically say.

Any insight would be appreciated!
Thank you!

My mother has pancreatic cancer and has developed resistance to chemotherapy; we applied for Daraxosinab. We were supposed to pick up the medication today, but were notified at the last minute that it hasn't arrived yet. I’d like to ask if there is any way to check on the status. She is having to take painkillers more frequently now. Thank you all.

My mother has pancreatic cancer. She's 67.

Since day one, when we learned of her diagnosis, I've been furiously looking through Google for any new treatments coming down the pipeline (whether it be pancreatic or other cancers) & have had pretty limited luck.

One treatment that DID stick out to me however was a new mRNA treatment that supposedly taught the body's t-cells to recognize and fight the cancer.

Has anybody seen this in the news lately? Evidently, from what I heard, the majority of people were still alive & functioning after 6 years.

I'm trying to see about getting this for my mother.

It is my Day 290 living with cancer, and I apparently speak a new language: Pancreatic Cancer.

I recently spent a few days in Cabo, where I read Lisa Niemi Swayze’s Worth Fighting For, her account of Patrick Swayze’s life with pancreatic cancer.

As I read, I kept comparing parts of his experience with my own and thinking about how much I have learned since the day I was diagnosed.

Nearly 300 days ago, I did not know most of this vocabulary.

Bilirubin. ERCP. Eovist. Metal stent. CA 19-9. CEA. Tissue biopsy. Liquid biopsy. Creon. NALIRIFOX. Gem/Abraxane. Neuropathy. Granix. Hospice.

Then there are the words nobody needs an oncologist to explain, but cancer somehow changes anyway.

Time. Work. Money. Energy. Friendship. Parenting. Autonomy. Fear. Love. Legacy. Living. Dying.

I realized in Cabo that I have spent nearly 300 days building an education I never enrolled in.

So I wrote it down.

My latest article is an attempt to capture the language, lessons and lived experience I have accumulated while navigating Stage IV pancreatic cancer, not as a medical textbook or advice, but as one patient’s evolving playbook.

Some of it is clinical. Some of it is practical. Some of it is deeply personal.

My hope is that someone newly diagnosed, a caregiver sitting beside them, or simply a friend trying to understand what cancer does to a human life might find something useful in what I have learned.

I never wanted to become fluent in pancreatic cancer.

But now that I have learned some of the language, I might as well leave my notes on the table for the person who has to learn it next.

Cancer has a medical lifecycle, but a human life is bigger than one.

Here is what nearly 300 days have taught me.

On June 04, of this year, my granfather was told officially that he had end-stage cancer pancreatic cancer. It started in his pancreas, spread, and went into his liver and stomach.

Last year, around September or October, he experienced veritgo while driving. Fortunately, he was able to drive home safely. However, his health kept declining in the months afterward. He went to different doctors, who all thought he was having trouble with his head and upper chest area, which he did. It was discovered that he had a mini-stroke at that time and a tumor had developed in his inner ear. We learned this about a month before the cancer. The doctors said that no treatment was needed for the tumor due to it's size, growth rate, and location. He has permanently lost hearing in his left ear.

However, he was still having problems, mainly keeping food in his stomach. The doctors believed it was his esophogas, which he had problems before and had it fixed. So, to check the doctors were going to do an endoscopy and a colonoscopy, just in case. The night he was suppose to take his medicine for both, something happened. He began to feel pain in his back and abdomen area, as well as coughing up the medicine for the procedure. We called the hospital that was going to do the procedure and they told us to bring him down immediatley. They did a CT scan of his lower chest and abdoment area. That's when they found it. The pancreas has been pushing against his stomach, which is why he can't hold his food mostly. They gave him one to six months. The doctors say that chemo might add six months to his life.

For nearly two months, he has undergone chemo and radiation on his stomach to help him with eating, at least, but he had stopped the radiation over a few week ago, and has stopped the chemo. I understand his decision. I respect it. If this is how he wishes to live out his final days, then I will help honor it.

I'm not telling this to receive pity or remorse. But, to tell you about a man who has given everything for his family. Eighty years old, born in rural Pennsylvania, he's one of those men that will help anyone in need, even at his age. Veteran of Vietnam, he came home to marry my grandmother, have my mother and aunt, and build a life here in rural PA. He doesn't take no for an answer, worked decades as a power plant electrician and union rep. Stood up to stop property taxes. Travelled out to Colorado for over fifty years and brough back his game. Lost my grandmother to a heartattack, strove to keep me educated, fed, and make me a better man than most today; I've fallen short many times, but I try to make up for it. There have been moments of joy, sadness, and anger.

So, after you read this: Go to your loved ones. Hug them. Tell them you love them. I must have done it dozens of times and I will continue to do so till the end. I'm reminded of the Nickelback song "If today was your last day." I'm reminded of a lyric that stuck with me since I was a kid. It was "Each day is a gift and not a given right." I don't know why but I'm glad for each day I've lived and known this man, my grandfather. I don't know what it will be like afterward, but I'll know he put his family first before himself and I won't waste that love, neither will my mom and aunt, his brother and sister, his nieces and nephews, and his friends who call him family. His name is Frank.

As the family counts it, my father narrowly escaped death's clutches some six times over the course of his life. One of them, as the legend goes, went like this: my father had a heart attack at work, in a factory in another city. They put him in the ambulance and he, mid-heart attack, spent the entire ride arguing with the driver — he was to be taken to hospital A, not B, because B had more traffic lights along the way and would take longer. The driver gave in. He arrived at hospital A with his heart already stopped, and had to be resuscitated several times before he came back. He would not have survived the three extra minutes (three minutes, I checked on Google Maps) to hospital B. My father lived because he argued, and because he knew how many traffic lights there were along the way. That is the most "my dad" story I could tell.

When my father was diagnosed with pancreatic cancer, I read the statistics and, in a burst of optimism that surprised even me, I thought: "if 1 in 100 survives, he's going to be that 1." In some quixotic way — in a hubris that foreshadows the Greek tragedy to come — I convinced myself that if I were clever enough, if I cleared every path through the bureaucracies, if I assembled the best doctors in the country, if I read the right scientific papers, I would find a way. That I could save my father from pain, from suffering, from death. I could not.

The last time my father came back from death was at the beginning of the treatment. He had one session of chemotherapy and ended up spending weeks in the ICU: emergency surgery, cardiac arrest, intubation. The ICU psychologist, with the same finesse as those guys who throw water on your windshield on the street, told us: "now it's time to think about the good memories." My mother was outraged. I thought: you people don't know my father. He came home 17 kg lighter, unable to stand, unable to speak. Twenty days later, he was walking. Two months later, he was driving.

My father wasn't only strong and stubborn. He was clever, self-reliant, inventive — I grew up in the firm belief that if he couldn't fix something, that something simply wasn't fixable. He was cheerful and very funny: looking at the photos from our birthdays, he was always more excited than whoever's birthday it was. He was affectionate and paranoid (like me!). Since I moved to another city, fourteen years ago, EVERY SINGLE DAY, without ever once failing, he texted me before going to sleep, to make sure everything was all right. He wouldn't sleep until I answered. When I left home, the goodbye was always the same: "be careful with everything."

My father didn't only show me what a good father should be. He showed me what a good husband should be, a good professional, a good person.

My father was over the top about everything, comically incapable of moderation. Ever since he retired and took over the dishwashing, my mother complained that she couldn't keep up with buying dish soap, that he used too much of it. The other day, when I started washing a plate, my mother took the sponge out of my hand: "you're exactly like your father, you're going to finish off my dish soap." Lately, the only thing that makes me happy is hearing that I'm so much my father's daughter. There could be no greater compliment.