r/pancreaticcancer

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?

Hello.

I know the majority of you might have had the Folfirinox "full" version or another type of chemo. But for those who received mFolfirinox, what were your experiences regarding side effects, loss of appetite, weight loss, or toxicity?

My father will receive adjuvant chemotherapy treatment in a clinic, admitted to the hospital (approximately one day every two weeks), instead of having the catheter (port).

As his daughter, I just want to be there for him and help him in any way I can.

Thank you.

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.

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.

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.

2. 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.

3. 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.

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

Pancreatic cancer is the most deadly insidious cancer and we have actual survivors who have been kicked out of this sub for spreading what these moderators call "disinformation" and "miracle cures" only because it veers away from or adds onto standard of care protocols from oncology wards. Integrative oncologists who have had great success with pancan patients (some of whom I know personally) who incorporated adjuvant protocols that included keto diets, high does vit c, d, fasting, repurposed drugs, supplements are doing so well because of this. This is a personal choice that all patients have to make after doing their own detailed research and consulting with their medical team. Everyone is different. You can't call a protocol "disinformation" when there are hundreds of published peer reviewed scientific papers from the greatest research oncology institutions in the world including Johns Hopkins, MD Anderson, USC about the effectiveness of these repurposed drugs and therapies in their years long in vivo and in vitro experiments. Johns Hopkins has patented their own version of Mebendazole and are rolling it out in clinical trials with all their advanced cancers including pancan for crying out loud! Just because your oncologist doesn't prescribe it doesn't mean it doesn't work. A lack of large clinical trials doesn't mean it doesn't work. Again, it's a personal choice. Choose the protocol that makes sense for you and learn the science behind it. But no oncologist has ever claimed that this published research conducted by the leading cancer biologists in the world is false, so why are moderators on this thread acting like it is? Who is any moderator to decide an integrative medicine doctor is not worth listening to? Or the top cancer cell biologists, oncology researchers at Johns Hopkins, Boston College and University of Iowa are not worth listening to?

It's dangerous and wrong to be kicking out survivors whose protocols incorporated other things besides toxic chemo drugs. We should be hearing from ALL PAN CAN SURVIVORS who want to share their stories especially since there aren't that many of them, let's be real. And some of those survivors do include people who received only standard of care, absolutely. If one of the "rules" of being part of this subreddit is "NO DISCRIMINATION" then why are survivors and caregivers who incorporated these adjuvant protocols to much success being kicked out and banned? That sounds pretty discriminatory to me.

These moderators claim to only publish "evidence based" standard of care treatment plans, but there is no "evidence based" standard of care treatment plan from any oncology hospital in America that has effectively cured pancreatic cancer for all those dying from it! What clinical trial has cured a large demographic of pan can sufferers in the last 50 years? Maybe it's time to be open to new or differing scientifically backed information, isn't this what reddit is for? Especially with a cancer like this, the more information, the better.

This is life and death after all.

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.

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.

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.

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.

Dad was diagnosed with stage 4 pancreatic cancer back in March. It was on lymph nodes, liver, stomach and wrapped round major arteries. He had the option of chemo to slow things down but in his stride he declined this and rather live his last months doing what he loves.

It was horrible watching him deteriorate over time and especially since I worked in the hospital he got diagnosed (it’s a small hospital and we all know of each other).

He died in hospital surrounded by all his close family and was really peaceful. Couldn’t ask for anything better.

I just don’t know where to go from here as I already lost my mum 7 years a go.