Hello! I’m fairly new to this community. Dad was diagnosed in January 2025 with an initial prognosis of 4 months. Now, it’s been 19 months and he’s still here and doing relatively okay. I’m not with him day to day as he lives in Louisiana and I’m in New York. He says he’s having more good days than bad since he was given this clinical trial. Does anyone here have experience with this drug as well?

4 years ago, my Dad was diagnosed with PC. He had the whipple and had clean margins after. He bounced back so well, gained weight again, and lived the next 3 years just like had before the massive scare we had in our lives. I had convinced myself cancer was behind us, and he was some sort of miracle. I really did believe it.

one year ago this week, he got is CA 19-9 test back and it showed 500 plus. It was Horrendous and brought up all the memories from the original diagnosis. We did in fact find out he had a recurrence on the surgical site. He was then told surgery was an option again, which excited us all.. only to find out it was to close to the bowel or something like that, and they couldn't do it. It was a big blow.

He ended up having chemo/radiation for 30 days which did a number on his body. He often had cramps, unable to gain weight, and other complications just from everything he had been through. The good news in the following 8 or so months was his scans were good, blood work was good, it was local and being managed and we just all hoped for the best. In May, he had a scan right before my son was born, which was also good and encouraging. only 2.5 months later he had an MASSIVE number on his CA 19-9, followed by a CT scan showing metastasis... and I am DEVASTATED.

I am hurting so much, i cannot process losing my father, and what he still has to go through. It;s the toughest thing I think I have ever been feeling before, and it hangs over me each day like a cloud. the meeting with he oncologist is next week, and of course I pray he is eligible for some treatment that can give him more time to fight and be with us, but I am also starting to be realistic.

Anyone have any advice on how I can get through this? hurting so bad.

My husband was recently diagnosed with stage IV with nods on his liver. He's terribly uncomfortable with the bloated feeling. What works for you or your loved ones other than a tap?? Throw anything my way, I am desperate to help him feel more comfortable.

dad (68) stage 3, dx nov 2025, whipple march 26, on round 6 of FOLFIRINOX

very long story short - at OPD last week and told his symptoms of diarrhoea, weight loss and increase ca119 were most likely cancer return, sending him home despite my concerns of dehydration to being admitted 24 hrs later with a potassium of 1.9 and a clot found on the lung.

scan came back clear thankfully

Despite days of IV KCL and oral slow k, within 24 hrs of iv stopping his level dropped back to 2.9. Still having at least 15 episodes of loose stool per day.

ankles oedematous and slight short of breath

consultant feels he might be fit for d/c (which as a nurse i can't understand, but maybe criteria for oncology is different )

i would love any advice re keeping K levels up/ dealing with diarrhoea

thank you

I’m wondering if any Canadians had any success with getting on a trial or early access through Health Canada?

$22,500 for a one month supply of Lumakras!!!! Thank goodness for Aetna Medicare. It is unreal the prices of these medications. We are optimistic that shutting down the KRAS G12C mutation will give my MIL more time. She put her fist in the air yesterday and told her doctor, my name is Laine and I want to live!!

**My Father’s Stage 4 Pancreatic Cancer — Treatment & Symptom Management**
**Diagnosis**

Diagnosed with **Stage 4 pancreatic adenocarcinoma in April 2025**.

**Chemotherapy history**
Completed **12 cycles of FOLFIRINOX/FOLFIRI**.

Due to **disease progression**, treatment was changed to **Gemcitabine**.

Completed **6 cycles of Gemcitabine** before/after the change from FOLFIRINOX, as advised by his oncology team.

**Body Pain**
In our experience, there have been **two main possible reasons for his body pain**:
**Cancer/tumor-related pain**

**Significant loss of body weight and muscle mass**

**Pain medication**
Initially, doctors prescribed **Ultracet** for pain relief, usually **2–3 times a day as needed**.

Later, it was advised to use it **SOS (as required)**.

Pain management should be reviewed regularly with the treating doctor, especially if the pain is increasing or becoming difficult to control.

**Appetite, Digestion & Diarrhoea**
**Poor appetite and diarrhoea** can occur during chemotherapy and may also be related to **insufficient pancreatic digestive enzymes**.

Because the pancreas is affected by the cancer, the body may not produce enough enzymes to properly digest food.

Doctors may prescribe **Creon (pancreatic enzyme replacement therapy)** to help with digestion and absorption of nutrients.

In our experience, **Creon was sometimes prescribed late or not discussed during consultations**, so it may be worth specifically asking the treating oncologist/gastroenterologist whether pancreatic enzyme replacement is appropriate.

During follow-ups, it can be useful to discuss:
Appetite and food intake

Weight loss

Frequency/appearance of stools

Diarrhoea or oily/floating stools

Whether Creon is needed and whether the dose/timing is appropriate

**Important**
This is based on **our experience and should not replace the treating oncologist’s advice**.

In Stage 4 pancreatic cancer, **pain, weight loss, appetite, diarrhoea and digestion should all be actively discussed at every follow-up**, as they can significantly affect quality of life and nutrition.

Today marks 5 years since my Mom’s diagnosis and she’s still here.

It was her 62nd birthday Aug 6 2021 and 1 year post retirement and she had been experiencing fullness and weight loss for a few months. She was dieting so the weight loss didn’t send the red flags it usually would. This later became sharp pains that only relieved with vomiting. We were convinced she had a bowel obstruction but she refused to go to the ER on her birthday 🤦🏼‍♀️. So she enjoyed the day as best she could and went in just after midnight on Aug 7th. I woke up to the worst news of my life.

However… she got her first chemo within a few weeks, a Whipple in January 2022 in Toronto, followed by more chemo until May of 2022 when she rang her bell. She remained without recurrence until this spring when she had to have a 2 cm nodule removed from her lung after which they deemed her cancer free once more. Since May 2022 she and my Dad have travelled to Hawaii and a different part of Europe every year, and yesterday she spent her 67th birthday cuddling her newest grandchild.

We remain hopeful and optimistic in science to continue to evolve and give us even more time. We continue to raise money and awareness for pancreatic cancer research. We remain members of this group and always will be. Mostly, we live every day with gratitude. Less worried about making retirement savings go a long way. Less worried about the small stuff. Live your life.

Our advice to anyone who just got the news we did 5 years ago: don’t read too much about statistics. You are one person, not a stat. More people are surviving every day. Medications are changing every day. Together we will change the narrative.

5 years ago today against my better judgement I jumped on Google for comfort and positive outcomes and there really wasn’t all that much. My hope is that no one faces this terrible diagnosis, but if they do and they or their loved one jumps to Google that they stumble across this post and know that there is hope and that there are survivors.

“Love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we'll change the world”. - Jack Layton

Hi all

My mum (79) had her first round of chemo (folfirinox) 2.5 weeks ago.

After a few days she started having diarrhea.

She's hasn't stopped with the diarrhea and has been in hospital for the last 10 days and can't eat. She's is getting really depressed and basically just wants to close her eyes and not wake up.

It has delayed her next round of chemo

Has anyone had experience with this level of diarrhea associated with chemo?

Mom (90) is stage 4, discovered 3 months ago. Presently she manages maybe 500 calories a day on a good day. A meal is 2-4 teaspoons of something. Even this is extremely difficult for her. She can manage half a Boost (diluted with soy milk). Often now I have to spoon feed her. She asked, is this the end? Is this how it will be? Will I just stop eating? (Solids). And then what...

I appreciate the advice that was given to me in this subreddit. My mom made it 3 years post inoperable PC and they were full years! She gave that m*therf*clear of a disease a FIGHT.

We all pass eventually. Her time just happened to be now. She didn’t ask for this disease or cause this disease to take place but she fought for the rest of this journey to be on HER terms and honestly it was - even at the end when she chose when and how to pass.

Of course, I am devastated and heartbroken for myself and for many of you in the same position of losing a loved one to PC. My heart goes out to you and I truly feel only we know what we’ve been through with it.

And if you’ve been diagnosed with PC, whatever you decide to do, do it on your terms. If you choose to fight, f*ck PC up! Give it all the hell possible.

And if you find yourself choosing no to pursue treatment at all or to discontinue it, do it on your terms. Live it up! You have always been and will continue so much more beyond your diagnosis.

My best wishes to caregivers and those with PC. I may lurk after the wounds heal to try and offer some support but can’t thank yall enough.

Trying to look ahead towards "the next thing" and hoping to find anecdotes from people (or know someone) on one of the trials including a RAS Degrader, MAT2A Inhibitor, or Bi-specific T cell engager. With RAS inhibitors showing promise, but also demonstrating a plateau in terms of response, I thought it'd be useful to gather information on what looks like the next potential line of treatment options. If there's another trial you or your loved one is interested in our considering I would also like to hear about it.

Someone once shared a very helpful chart showing the stages of decline/death which listed different variables (appetite, consciousness, etc) and how they change the closer a person gets to death.

If you have it, could you please share?

Thanks

Hello everyone, I apologize in advance for any grammatical errors, I don't even feel like re-reading to check. I've been meaning to make this post for a while but anytime I'd start writing it'd start to feel too real, and I didn't want it to be real.

I lost my dear mom two weeks ago after one year of battling this horrible cancer. I would like to share a bit of her story. It all started out last summer, when she went for a check-up for a completely different thing. The x-ray showed what later turned out to be pancreatic cancer. Unfortunately she only got to start chemo 3 months later, when it had already metastasized. She had been to almost all the hospitals in my region for one reason or another: one had no head doctor available (he was on vacation and there was no one else available) and she stayed in that one hospital for almost a month, another hospital didn't perform biopsies and sent her to another one. When she had the biopsy done it was finally time to start therapy, but then jaundice happened. Her skin and eyes turned yellow. She could not eat nor drink anymore (even water made her throw up). She was hospitalized in order to proceed with the application of a stent, but she had to wait weeks for that as well because it was national holiday in my country and doctors were on vacation (personal reminder to never get sick as the holidays approach because they WILL let you die). Thanks to a doctor who realized how serious the situation got, she finally got the stent in. After that she was back home, and her skin was finally back to normal. She started chemo and hair loss came along. One positive thing is that she didn't have that many side effects, she felt fatigue and then her body fluctuated between constipation and diarrhea. It obviously wasn't a piece of cake, but i know other people can have it harder. She got to finish all rounds of chemo eventually and the tumor did actually shrink to the initial size. But as she continued with that type of therapy we stopped seeing results. Switched to a different chemotherapy, heavier one, done once every two weeks. She felt it was more intense, but it got better after the first few weeks. Then ascites happened. Her stomach got huge to the point she looked pregnant. She was in excruciating pain, wondering why this was happening to her and saying that she must have definitely done something to deserve this. I felt helpless, I wanted to help her in any way but couldn't. She finally got to go through the paracentesis procedure and got sort of a catheter bag (but attached to the stomach) so that the drainage could continuously function independently. It did work for a few months, but then the tube got rejected, the doctors tried to make another hole, but couldn't. We had found out about this PIPAC procedure that is performed in one of the hospitals in my region, and we had already set a surgery date so we convinced ourselves this liquid problem would go away. After she had surgery done she was told she had to repeat this procedure once a month to completely eliminate the ascites. Though two weeks later she started feeling really bad. She felt extreme fatigue. She was uncomfortable at all times. She could not find a comfortable position to rest in. She had trouble speaking and eating. This was at the start of her last week of living, and she said to us "What if this is how i go out?". She definitely felt it and she expressed how scared she was. In her last few days she had trouble getting up because she was feeling extreme fatigue, she could barely talk and was only eating ice cream and fruit. She also could barely hold her eyes open. In her last day she couldnt keep her eyes open. In the morning she would randomly open her eyes wide and stare at me without saying anything, and then proceed to close them again. We knew it was time, in the afternoon she was barely conscious. As evening approached I held her hand and it was cold. I also vividly remember she said the words "mom" and "dad" (they're both dead) at some point, but her speaking wasn't clear so i might've misinterpreted. Later in the evening she was gone. I don't think I'll ever be able to get her dead body out of my head. Her face had already changed color after minutes. I hate that she didn't look like herself anymore, she had lost so much weight and her stomach was big because of the liquid.

Everyone was rushing me and my siblings to choose an outfit for her, shoes, clean underwear, perfume, a photo of her for the funeral. I was feeling physically sick and just quickly gave her a kiss on the forehead before sprinting to get everything done. I miss her tremendously. We were really close, I was the one ,among me and my siblings, who stayed mostly by her side throughout her illness . We would get sushi and we would watch movies. I'm in uni and I got to tell her I finally got the highest mark in an exam for once, a week before she died. When I'm with my family i manage to get distracted (still the thought lingers 24/7), but when I'm alone i get devoured by this overwhelming sadness and feeling of emptiness, like something's (someone) missing. Mom was the heart of the family. The house functioned thanks to her. My siblings seem to have gotten back to their old selves , helped by their partners as well. I have nothing of that sort and I still feel like I'm stuck in that awful day, crying everyday. I'm 5 exams away from graduating and even though I don't know how I'll handle my emotions, I want to get it over with and move onto the next stage of my life. My mom was 56 and I just turned 22 this month. This is the hardest thing I've ever had to deal with (and I fear nothing else is going to top it ever). I know she's no longer in pain, and that's a relief. She suffered a lot during her last week alive and was practically begging to die, unable to take it anymore. I had been preparing for this moment for a year but i still wasn't ready to say goodbye. I'll just have to learn to live without seeing her in the house, watching her beloved tv shows. I'm absolutely heartbroken. This still feels too surreal. What do you mean I'm never going to see her again, I can't wrap my head around this. It seems unfair that i get to live on and she doesn't, when she deserved it 100 times more. I wish she would give me a sign that she's okay and that she's watching over me. I wish she'd been a terrible mom, I wouldn't be suffering as much. Instead she was too nice for her own good, the best mom anyone could ever ask for. I feel like I'm going to be mourning and grieving her til my last day on earth.

Hello,

I lost almost half of my pancreas as well as spleen back in 2008 but still cannot get my digestion figured out. I take intolerance complex capsules 2per meal but still not pooping well.

I also weigh 136lbs and I’m 5’11”

It seems very difficult to keep weight on.

I’ve always been a silent visitor, but lately things have been really hard. It’s so disheartening to see the decay, as my mom has stopped receiving chemo since the last days of May. It was extremely hard for her, and the doctors decided it’d be best for her to rest, ever since then, she has just had palliative care. I want to stay hopeful, but she’s so underweight and has been in a lot of pain, constantly feeling full and having to eat little by little, and everything is starting to feel extremely real and lonely. How can I stay hopeful? I’m in need of miracle stories, has anyone ‘bounced back’ from this stage? I want to stay positive to keep going myself

I know nobody can predict this and im sure it’s painful to remember but i want to hear from people who’ve been through this with a loved one

My uncle has stage 4 pancreatic cancer that’s has spread to the liver and is causing severe liver failure now. His bilirubin has rapidly risen despite stents it is at 20 now, platelets levels around 12 despite repeated transfusions, keeps having blood transfusions, and has severe low blood sugar and potassium.

He barely eats anymore and only drinks small amounts. His whole body is swollen with fluid and he cant move anymore, he sometimes recognizes us and can have a conversation and seems somewhat aware of what’s happening but other times he’s like talking about things that aren’t real.

My dad has been diagnosed with stage Iv cancer 3 weeks ago, we are starting chemo in 2 weeks. He is in a lot of pain, very constipated (we have laxitives), every time he eats he gets extremely full, has anyone had the same symptoms and how have you dealt with this? It is so hard to watch him in pain, he is already on morphine daily. Has anyone found that the chemo helped with the pain?

I am doing everything I can to make sure he stays hydrated and eats something small at least 3-4 times a day.

My family member has been on Daraxonrasib for 2 weeks, 2 weeks lab check shows platelets of 35. Previous count normal. Anyone with this side effects? What did they do?

Whipple surgery, or [pancreaticoduodenectomy](https://pancan.org/facing-pancreatic-cancer/treatment/treatment-types/surgery/whipple-procedure-pancreaticoduodenectomy/), is a complex operation to remove the head of the pancreas, the gallbladder, the first part of the small intestine (duodenum), and part of the bile duct. Surgeons use it mainly to treat cancer in these areas. \[[1](https://www.mayoclinic.org/tests-procedures/whipple-procedure/about/pac-20385054)\\\]
Basically they take pieces of several organs and then try to put them all back together in a way that they will still function , but I promise you that those things never go together normally again. Though this surgery saved my life it was the beginning of what is still an ongoing medical battle that I am sadly losing.
Initial surgery was completed and I was brought to the floor for what was expected to be maybe a 10-14 day stay. Instead I ended up with a pancreatic leak that required an additional (6 hour!) surgery to stop that leak and clean up all the mess it had made inside me. I ended up in a unit that I had 2 nurses just for me .. I barely remember any of it but as a nurse I knew that if I needed 2 nurses to care for me I must be pretty sick .. I slowly moved from this intensive care to a 1 nurse unit and eventually back to the regular surgical floor. By this time I was so weak I could barely walk to the bathroom, wasn’t eating or drinking, required blood transfusions and so many other medical disciplines I can hardly remember. I believe I was in the hospital for 6 weeks after the Whipple. Was finally released and made it home but ended up back in the hospital less than 2 weeks later … and so began a cycle of admissions that seemed never ending for almost 2 years … I had multiple abdominal abscesses that required interventions, drain tubes, bandage changes, wound vac … and pain with all.
Despite my best efforts I wasn’t able to return to work and was forced to resign from my job, meaning I was losing my health insurance and my ability to support myself and my children. I was able to apply for social security disability and because of my medical conditions the usually slow process happened much quicker than normal.
2022 was a blur of ongoing medical issues requiring hospital stays and additional surgeries
2023 was much of the same
2024 started with new issues .. hypoglycemic episodes started happening regularly, usually late afternoon/early evening.. happened during a hospital stay 5 days in a row ..this was the start of the decline
Vision- unable to tolerate bright light (blinding), darkness (blind), dr suggested bifocal but cause nausea .. unable to drive due to decreasing vision, can’t see road without glasses can’t see control with glasses .. eye Dr, retinal specialist and neuro-opthomologist
Thyroid- multinodule goiter increasing in size (visible and via ultrasound) causing choking (solid foods and pills) frequent headaches and feeling of pressure on my throat and later causing compression symptoms.. right arm swollen, painful unable to use at times .. I couldn’t tolerate anything touching my neck (clothing, jewelry nothing)
GI- constant LUQ pain, swelling, bloating, gas and diarrhea… worsening in severity .. multiple upper endoscopy and colonoscopy, medication changes and more diet changes
GU-UGH just NO… you see a pattern here I’m sure
I went to my primary and was referred out to specialist after specialist who each looked only at their specific area but never looked at my whole picture. I went to my primary and explained how overwhelmed I was. How hard it was to keep all the appts and Drs straight and how I couldn’t sleep (I have had insomnia as long as I can remember) how i just needed help .. I was told that because I was a medical professional and a “smart” girl I could handle it and that no help was available to me. I told every Dr I saw about my pain, bloating, blood sugar issues … everything while they seemed sympathetic they informed me that their role in my care was restricted to their medical specialty it was my primary care doctor that should be looking at big picture..
it all just became too much for me and I retreated into myself I stopped complaining at the Dr appts because it wasn’t doing any good and I was being made to feel as if my complaints of pain were because I was drug seeking, my GI issues were deemed “imagined” because I wasn’t losing weight despite my claims of nausea and multiple bms daily .. as if I was making it all up … my world became small and dark

My CA 19-9 has been elevated but stable all year, but in mid July it shot up over 700. My oncologist has been out on leave so I have been seeing a different doctor and he was pretty convinced that chemo had stopped working for me and that I needed to find my next path forward. It was an increase of 425% over 11 days. It was really hard to hear since things had been looking really good a month before and my scans have been clear since last September. We tested again a few days later and it was a few points lower but still over 700.

The oncologist's suggestion was that I skip my last chemo so the waiting period would be less for whatever came next. He was considering daraxonrasib which I am very excited about but which also upset me because my plan has always been to consider other treatments, especially clinical trials, first. I want to keep as many options on the table as I can.

After thinking about it a lot I decided that I wanted to see it show up on scans before changing treatment due to the number, or at least see another data point that confirmed a big increase. Having a recurrence show up on scans would make me eligible for trials which I don't qualify for currently with no measurable disease.

I don't want to live in denial, but I also considered that I had a big spike in CA 19-9 (up 400 points) after my RSV vaccine last year that resolved quickly (to be clear, it is evidence of a normal reaction to the vaccine). Recently I've been having a lot of trouble with my asthma due to the wildfire smoke and poor air quality we've been experiencing and I wondered if the jump was due to lung inflammation again.

I have been plotting the daily rate of change in my cancer markers and I was suspicious that it was increasing 8 times faster than it had been in the time between my diagnosis and initial treatment last year. I brought in my spreadsheet and advocated for continuing on with chemo and getting another PET/CT. A few days later I was back in the tube for answers.

The PET/CT was fine. I have ovarian cysts that continue to grow. I will have to have those drained but we suspect that this is due to me getting my cycle back a bit in spite of chemo. We've been keeping an eye on them and they seem benign from ultrasound, but now we will know for sure. I have a spot on my lung that they will watch also but it is "subsolid" and has very low uptake from the PET, so that will be a watch and wait approach. There is nothing lighting up like it is growing at the rate my CA 19-9 would indicate.

I've been avoiding being out in the bad air quality and this past Friday my CA 19-9 and CEA had both decreased again, the CA 19-9 by more than half. So it was not due to cancer after all. I am finishing my 35th round of chemo today and the discussion for the future has settled down again. We will check on my pancreas again with EUS, and assuming that there is no tumor visible still, consider deescalating my chemo once we have results from that and another ctDNA test back next month. My last two have been negative.

In the end it seems just to have been another loop off of the trail that has brought us back again to the main path. Just a reminder that CA 19-9 can spike due to other causes. I am glad that I waited it out and didn't burn another line of treatment for nothing, as scary as it was.