r/pancreaticcancer

My older sister (15 year old female) got diagnosed with pancreatic cancer, she has been throwing up for about 2 months so I expect it to be found “late” but we just found out she has to go through chemo, and I don’t know if their going to try to remove it. She did do drugs and drank alcohol this year so that might do something. But really what I’m asking for is the honest truth on how likely it is for her to survive because I can’t live without her and I want to know what to prepare for. Thanks.

Hi, everyone! I hope you're all doing well.

Time for our monthly check-in for those who are diagnosed with pancreatic cancer or their caregivers. You can describe how you're doing (hopefully well) and how things are going well for you (feel free to include personal wins that aren't cancer-related, if you like).

My personal "check-in" will be in a comment below.

Zev

My mom (71- 70 at time of diagnosis) was diagnosed with inoperable Stage 4 pancan in February with mets to her liver.

After 3 chemo treatments (gemcitabine/abraxane) her CA-19-9 dropped by 60%. She had an updated pet scan after her 6th treatment which confirmed the CA-19-9 drop. Her tumor is 50% less active and has also decreased in size. No new mets in body and her liver mets have reduced as well.

She has had a few bad weeks and her bloodwork dropped to dangerous levels, but her body is replenishing well 💜

Just wanted to share with everyone. I am so happy- she is my best friend

I apologize if this post is all over the place. My mother is now stage 4 one month post whipple. It started as a tumor on the head of the pancreas 4.5cm, positive margins and spread to 14 out of 21 lymph nodes, Lymphovascular invasion, Extensive perineural invasion. She is 54. We just spoke with the oncologist who gave us the news that it has spread to her lungs, 3 nodules to be exact that have grown since Feb 25. 6mm from 3mm previously, 11x14 mm from 4 x 7 previously, 10mm compared to 5mm previously. The oncologist advised that she wait to start her chemo when symptoms start to get worse because it will “eventually stop working” and the cons would outweigh the benefits— in simpler terms. Obviously it is up to her but we just don’t know what to do. She was supposed to start via picc line on the 4th of May but has been postponed until we make a decision. Has anyone had a similar experience with being advised to wait for chemo? Or had any family members/your own experience going on it straight away? My mother loves life and wants to fight as long as she can, but of course quality of life is important to us as well. Currently looking into a second opinion but I wanted to ask other folks who might have personal experiences.

My dad passed away yesterday from pancreatic cancer. I’m still in shock and don’t really know how to feel. If anyone has been through this, I’d appreciate any advice or just hearing your experience.

Found out this morning my beloved father has stage four of pancreatic cancer previously diagnosed as stage 1 pancreatic cancer, and that it spread to his lungs. i am heartbroken. Is this really going to be the end? After his first round of chemo he didn't want to do anymore. I feel awful, I have a feeling something awful is coming and its making me feel sick. i just want support and love please

My mom was diagnosed with pancreatic cancer in October 2024. Her tumor is on the head of her pancreas and wrapped around her artery, so surgery was never on the table. We were told from the beginning that palliative care was the only option.

In the beginning, her first chemo infusion absolutely wrecked her. She was extremely sick, had 0 control of her bowels, and was hospitalized more times than I can count.

After about a year of that, her team switched her to a different type of chemo that was easier on her body and kept the cancer from growing, but it still took a serious toll on her. Most of her days were spent sleeping in her hospital bed at home, eating very little, and struggling to get around as she is very very weak. It wasnt good, but it was better than the first go around and we were keepijg the tumor from spreading, so she kept pushing through.

Over the past few months, there were several hospitalizations and extended stays at skilled nursing facilities to manage her pain and try to get her strength back.

When she came home most recently, I requested a one off conversation with her oncologist — I needed him to be straight with us. Would this cancer ever be operable? Or is the rest of her life going to be chemo, hospital beds, and 0 quality of life?

He decided to have this conversation with her while I was out of town. He recommended to move her to in-home hospice as due to the location of the tumor and her current health.. she wouldn’t be a candidate for chemo in his eyes. She was caught off guard by this and I think holding out hope that she would be cured. It broke me to hear her shock, but he explained to her that the chemo that she has been taking was really just to keep the cancer from spreading, and if she was still this sick with such little quality of life.. that she should consider quality of life > quantity of life.

I am struggling with what to feel. Part of me keeps asking: is this giving up? If she got stronger.. I took a leave from work, made sure she was eating, helped her exercise and rebuild her strength.. could she eventually become a candidate for the Whipple procedure? The tumor is still LA and has not spread.

I know I’m not a doctor. I just don’t know if I should be holding onto hope or if I’m in denial about what’s coming.

She’s home now and sleeping. I’m planning to stay with her as much as i can and work from her house.

I find myself staring at her and NEEDING to understand how much time I have left with her — and whether there’s anything more I could be doing. I’ll never forgive myself if there was something I could have done differently

I also don’t fully understand what comes next medically. Now that she’s off chemo, how quickly will the cancer spread? What do the days and weeks ahead typically look like for someone with locally advanced pancreatic cancer who has transitioned to hospice?

Some days she looks like it could be her last... others she’s up talking and sassing me around 😂

I just feel like I’m constantly holding my breath, and it’s crushing me.

Has anyone been through something similar? I’d really love to hear from others who have walked this road.

for someone with pancreatic cancer that can't even drink water without vomiting what is there to do? This has been ongoing for a week and a few days.

Basically she had numerous investigations (blood tests, endoscopy, ct, mri, biliary duct stent intervention twice, but with a plastic tube, she had it twice because the first time it got clogged) and all the investigations will have been for nothing.

The oncologist said she needs to be in good condition and stable to be able to discuss any treatment and ordered some more investigations to be done.

All this process has taken about 3 months at this point. She's been in and out of the hospital ER for 5 times now. The last 2 times they just discharged her immediately after giving her some IV medications/fluids even though at home she still can't eat or drink anything.

My point is, do you still try to call the ER or let the patient starve to death literally?

It doesn't seem like there's anything they can do that lasts more than a day or 2 and they just told her to take the meds she got prescribed.

She has antinausea meds like osetron, Domperidone, and creon anzymes which she takes but are not effective.

Also osetron/zofran, Domperidone are supposed to be taken short term from everything I've read, however the doctors just said to take it "as needed". For her that means taking it everyday multiple times per day. Yesterday she took Domperidone twice and she still vomited. Due to that, now she doesn't want to take any meds or food anymore because she says it's not effective, which is true.

I was diagnosed in July of 2025, did 6 rounds of FOLFIRINOX, had surgery mid-November and 6 more rounds of FOLFIRINOX and rang the bell on March 5th.

About 3 weeks ago I started having sheering abdominal pain occasionally when getting up as well as the return of some GI issues. I was more than a little concerned about the outcome of my CT scan yesterday (May 4th).

The good news is that there's still no evidence of disease!

Bad news is that I developed a hernia and need to set up a consultation with the surgeon though the oncologist didn't seem concerned. Also, the atrophy status of my pancreas went from mild to moderate and I will likely need to increase my Creon (meeting with GI doc is Thursday May 7). Odd part of this is my insulin production has actually increased - no longer on supplemental insulin (oral meds only) and A1C is 6.0 and falling.

I'm sharing this because I know that this stuff can be extremely worrying (you see it on the sub all the time) but sometimes it is still ok.

Next CT scan is in August - LFG!

I want to state first that my body, my journey, my everything is unique to … well … me. There may be some similarities that you can draw that may align with your journey. I am probably going to push a few limits with my post and statements but I want to be 100% transparent. I have told my care team, across the board that I am willing to talk to anyone about anything about any part of my journey with the prayers that I am able to affect even 1 person in a positive fashion. This is a rather long post that I hope you will read through.

I am a man who has a deeply embedded Christian faith and give all Glory to our Lord and Savior Jesus Christ. I will not, on the other hand, discount modern medicine and practice. I believe with all of my being that the Great Physician is guiding my care team in all ways.

So, without further ado. My story, my testimony, My Journey.

A little background on me and my world. I work in the IT segment of healthcare … more specifically I create and manage IT departments in rural healthcare districts. I have been involved in IT for 45 years and the healthcare side of things since 1997. I have had a life packed with various traumas from losing my mom when I was 21 to murder, living through a pedo step-beast, and losing my son to suicide. I have raised children for the last 37 years of my life. I have housed several beaten and broken families to domestic violence until they could get back on their feet safely. I do not care for and have never asked for any recognition from anyone other than God. I was kind of an asshole the first 20 years and did some really dark shit and got deep into narcotics … late 80’s narcotics … not this stuff of today. I kicked narcotics by 1990, liquor by 1996, beer by 2011, and cigarettes took me the longes at 38 years and finally quitting on 10/28/2015 @ 8PM. I have a pic of my last ever cigarette.

Most of my life I have been able to afford and take care of my healthcare needs out of pocket and as needed. Sure, being in healthcare, I knew that there were some tests and visits that needed to be had that were eventually going to cost me real money. My first real surgery came when I blew out my right meniscus and ACL. Fortunately by this time in 2016 I had insurance because my wife had needed a spinal fusion. Her previous discectomies I was able to cover myself but the fusion was by order of magnitude more expensive than I could afford so insurance was my cheapest way out. Since then I have learned the value of the expense and these past 6 months has been no different.

Now for the meat of this post.

I was onsite at 2 of my facilities last year about this time in TX. I am usually remote from CO with the exception of some onsite elbow rubbing. Right before I came home I discovered that the community with the first facility was experiencing an outbreak of new and untestable COVID variant. I stayed isolated and went home. I drive on Fridays and by the time I made it home (14 hours) I was feeling pretty good, a little tired but good. About 2 - 3 weeks later I am still struggling to breathe. I go to a local urgent care. They ran a few tests, checked my BP and recommended that I follow up with my primary. I giggled and thought … the whole reason I am here is because my primary won’t see me for 8-10 months. I ignored that and went on with life. I had some C suite changes in a facility in July so I found myself back pretty quickly and exposed to yet another new strain of COVID. This time wasn’t as severe and I opted to ignore seeking professional care.

Let’s fast forward to October 2025 and the day the music died.

On Monday October 20,2025 the administrative assistant at one of my facilities announced that she was going on vacation. I announced that I was experiencing an elephant sitting on my chest and I needed to go to a doctor. I again trekked down to the same Urgent Care. I was hoping to get a diagnosis of long-COVID, walking pneumonia, or bronchitis …. Hell, I would have taken the flu or similar. After 4 EKG’s, 2 lung x-rays, and a ton of BP checks that were all shitty … I was told: You need to pick your favorite ER and either you go straight there now or we call an ambulance to take you there now. By 12:30AM the next morning my BP was at 238/184 and they were struggling to keep it down and I felt as though I was struggling to hold onto consciousness, if not life itself. I was ultimately placed into the cardiac wing as they fought to find the right combinations of drugs for my BP. I had a chest echo, abdominal and legs ultrasound, angiogram w/out stints (not needed), chest/abdomen CT, PET/CT w/ radiation, and an endoscopy with a biopsy. There were a million different labs and other random shit that transpired over the course of those 4 days. At the end of the day I meet Dr. Benton with Rocky Mountain Cancer Centers who is coming in to tell me that through all of this they have discovered that I have a 2CM mass on the head of my pancreas. I was tired and ready to go home and already terrified that my heart was failing. He tells me that they are going to be my caregiver going forward and that I am in good hands. Holy shit, I could have never guessed just how good of hands I was being placed into. He has me setup with one of his providers as well as a surgical oncologist.

2CM …. Oh God please, what do I do? How do I react? Do I kick and scream and curl up like a 56 year old infant and just bawl my eyes out? I prayed, for the next 48 hours that I was confined to that bed, I prayed. I need to face the reality that is Pancreatic Cancer. I need to understand things like survival rates, short, near, and long term. I need to understand the treatments I am going to go through and what that road before me will bring. My wife, my kids, my grandkids … damn it … sofa king much to try to keep in mind.

The day before Thanksgiving I was given my chest port. The next Wednesday I started FOLFIRINOX the following Wednesday and underwent treatment biweekly for 4 rounds. We did a PET at that time and FRED (what I named it) had grown to 4.5CM x 3.6CM. This was devastating information. I thought FOLFIRINOX was the most aggressive and effective treatment method … it failing to slow or stop growth scared the absolute shit out of me. Everything I had just gone through and now none of it is worth a shit …what a blow to my heart.

I’ll pause her briefly to discuss my daughter and her employer. When everything happened she told her boss about my situation and that she was going to need to take some time off on short notice to help me take care of things when my wife wasn’t/isn’t able. She works for NovoCure and her boss immediately told her about the clinical trial they were in at that time for their OptunePAX product. My oncologist wasn’t real interested yet about me going into a clinical trial and I am not sure that I was really ready.

Now we come back to the nightmare scan with over 100% growth. OptunePAX is no longer in trial and has been approved by the FDA as the first new pancreatic cancer treatment in 30 years. My daughter takes the bull by the horns and makes things happen. She started making calls and dropping numbers and next thing I know, not only is my oncology team getting trained but I am getting a prescription. That was some of the best news I had gotten so far.

At the same time I decided to try everything I could get my hands on. I am not saying that anything I have taken is a miracle cure or anything like that. I am saying take my testimony and make your own decisions. Basically, if we read that it had a positive effect on cancer, real or perceived … I am taking it. Note to MODS: If y’all do not approve of my list of alternatives and want me to remove it, I will oblige but please don’t take my entire post.
My list that I take daily: Fenbendazole, Ivermectin, Boron, B12, Fluvic acid, dandelion root extract, sour sop, burdock root, RSO (1.5g), and full spectrum CBD

1 month into all of that and changing to gemcitabine + Abraxane I had a CT. The CT at that point only indicated that everything was stable … no growth … just stable. By this time the OptunePAX has now delivered and my wife and I are getting trained on all the gotchas and how to change out the arrays. My daughter joined in on the fun and has been a tremendous help to my wife. I have been wearing the device, doing chemo and everything else since then. My oncology team is aware of what I am doing and approves of it all. I kept all of this up until 4/21 when the Good Lord decided to put me in the hospital again and force everyone to test and question everything.

For 9 days I laid in the hospital terrified of what is happening to me. Many sleepless nights were had and having ample conversation/prayer with God. Was my cancer growing and was I progressing from early stage to 3 or 4 or even terminal … I just wanted to know and understand and feel comfort. I had chest and abdominal CT, ultrasounds, blood tests, and a billion other tests. My fever spike to 102.3 and that is when they iced me down. Luckily the fever never peaked like that again and start staying lower when it did come up. Infectious Disease was going nuts trying to figure this one out … just the like the cardiac folks were going nuts in October trying to find the mystery BP issue. On Tuesday he decides it is time for a PET w/ radiation. He needs to get a better look into my sinus cavity and see if there is an infection there as he is running out of options. The PET was ordered and completed, to everyone’s disbelief, in the hospital. I was done with the scan and had ordered lunch already when the hospitalist came in to tell me the PET had been ordered. I got him caught up and he came back a few hours later to give me the news.

He tells me, and the ID doc does as well, that they cannot find anything in the PET that would indicate as the source of the fevers. He continues on to look over the rest of the read when I finally press … Good God man … tell me about the cancer … I need to know. Has FRED grown or shrank? Can I celebrate in any fashion? And then he reads (verbatim from the scan): “ The previous mass in the pancreatic uncinate process and previous associated intense hypermetabolism have almost completely resolved, with isoavid soft tissue in the mass now measuring approximately 2.0 x 1.0 cm SUVmax 2.4 previously 4.4 x 3.6 cm SUVmax 6.0. The previous suspected peripancreatic nodal metastasis has resolved. No pathologically enlarged or hypermetabolic abdomenopelvic lymph nodes are identified. No uptake is identified in the abdomen or pelvis to correlate with fever and nausea.”

There are statements of non-concern about reactive/treatment related stresses near my liver and lymph node in my neck … all likely related to the fevers.

We had a follow up with my oncologist today and we understood correctly what we thought we understood. I haven’t won my war yet but I have had a some very successful battles and can see a day in my near future where I may have beaten this things ass.

It is late in the day for me and I am tiring so I am going to post this and go to bed. I will happily respond to any questions anyone has about my last 6 months.

I lost a dear family member to this disease and their final days is haunting me. Trying to make sense of what happened.

They were fine one day, in terms of communication with an occasional hallucination but were obviously getting weaker. Actually surprisingly ate (alot) more than the previous days, solid food at that. Mentioned it was starting to affect their eyes with blurry vision (sign of spread to brain?). The next day, we found them in a completely restless state. There was no communication whatsoever and no signs they recognized any of us. They still had strength in both arms and legs (which has me questioning stroke?) but obviously couldn't walk. Restlessness went away after the dosage of pain medication was increased and they slept for the following days until it was their time.

Could it have been a mini stroke/blood clot to brain? Cancer reached the brain? Or was this the normal?

Passed away less than a month after their Stage IV diagnosis.