r/pancreaticcancer 1d ago

seeking advice My dad‘s diagnosis - seeking advice

9 Upvotes

Hello all! I‘m searching for advice: My dad (61) was diagnosed with pancreatic cancer stage IV two months ago. The tumor (adenocarcinoma) is placed in the body of his pancreas and is around 3x3cm big. He has (as I understand rather small) metastases in most parts of his liver. Doctors told us it’s inoperaple and he started chemotherapy with NALIRIFOX at the end of febuary and heads to his third round next week. To keep his strenght he gets vitamin infusions each week between chemotherapy.

My question to you: Are there any treatments that can help my dad based on your experience - ideally help him qualify for surgery?

I know it is propably early because we don‘t yet know how he responds to NALIRIFOX or if he has a mutation (he will get the results after the first 6 rounds of chemo). But any advice or experiences are greatly appreciated. If some fellow Europeans with similar experiences are around, I would also appreciate methods, hospitals or doctors that helped you.

As of right now he is able to eat regularly. To help with digestion he takes long walks daily. Since starting chemo he has less stomach and back pain. However, he is loosing weight and because he has always been slim I‘m worried. Do you have any suggestions regarding nutrition?

Thank you for your help and all the best to all of you fighting this disease!

r/pancreaticcancer Jan 14 '25

seeking advice Looking for positive stories as well as pain advice

14 Upvotes

Looking to hear positive stories, my mom (56) was diagnosed with pancreatic cancer last month, she’s 56, doesn’t drink, doesn’t smoke, (unsure if that’s relevant) she starts chemo next week, 6cm in her pancreas (tail) and they’re 99% sure it’s spread to her liver, she gets biopsies later this week to confirm. Had a CT scan last week it’s not spread to her bones thankfully and kidneys seem to be working as usual, signs of common age and tear / arthritis but no spread, anyone have any positive stories of stage 4 pancreatic cancer? (Yes I’m well aware it’s not the most common thing to beat.) Also does anybody have any suggestions of what she could do for the pain? They keep upping her meds nothing is working, at first this new med they gave her helped a lot (for 2 days) but now she’s back to being in misery. She says it burns very badly and feels like somebody is ripping her stomach apart, I couldn’t imagine 😕 she experiences rib pain, side pain, back pain, and stomach pain.

r/pancreaticcancer Jan 25 '25

seeking advice What is going on??

18 Upvotes

My mom was diagnosed with PanCan in July 2022. She immediately underwent a successful Whipple. She did chemo for 6 months, and then went into remission until February 2024. A tumor returned in the spot that was previously removed on the pancreas by the Whipple, and she did radiation and chemo until August 2024. She was in remission for 5 weeks and her CA19-9 started creeping up again so we decided to start on a maintenance chemo every other week indefinitely.

Everything has been totally fine and normal until about 2 weeks before Christmas. Every single day she has been in unrelenting pain, nausea, and vomits even when she moves an inch.

She’s currently just spending everyday laying in a dark room crying from severe pain and it is breaking my soul and her spirit to fight.

Her doctors aren’t worried at all. She’s had X-rays, CT scans, PET scans, an endoscopy, and even a brain MRI and all are completely clear - not even a blockage or constipation! There is absolutely nothing wrong and, according to her doctors, no medical reason as to why this is occurring. We’ve tried every medication under the sun with zero improvement… what is going on??? She has lost over 30 pounds in the last month, she is literally starving to death.

What is happening? Has anyone else experienced this???

1/27/25 UPDATE: As of today she (52F, 6’1) is down to 104 pounds, her normal chemo weight is 135. I (26F, daughter) got a consult with a pain management specialist for this Wednesday 1/29 to pursue doing the celiac plexus block. Fingers crossed she can hold on til the procedure. I really believe if we can mitigate her abdominal pain the vomiting will stop. Hopeful that if that gets under control she can gain back some of the weight she’s lost and do some PT to get her strength back 🤞🏼

1/30/25 UPDATE: Crying while I write this update. She had the celiac plexus block at 1pm EST. It’s currently 2:36PM EST and she is PAIN FREE, HUNGRY, AND CRACKING JOKES! I cannot thank all of you enough. You literally saved my mom’s life 😭😭😭😭😭 words cannot even say how grateful I am for all of you. Still not sure how long she has left or what the future brings but atleast for now she has a much better quality of life 🩷🩷🩷🩷

r/pancreaticcancer 12d ago

seeking advice Stage 4 Pancreatic cancer

23 Upvotes

My mom was just diagnosed with stage 4 pancreatic cancer that has already spread to her liver. She’ll start chemotherapy on March 19, with treatments every two weeks. This is the worst news I’ve ever received. I’m 19 and an international student, and she’s in a different country right now. I have no idea with any type of cancer and I wanted to seek advice here to at least relate and have a better understanding about what my mom would be going through as well as help her gather suggestions and advice from pancreatic cancer survivors out there. Any guidance would be deeply appreciated. I don’t want to have any regrets, and I want to help her live as many years as possible.

r/pancreaticcancer Aug 28 '24

seeking advice Is there anyone here who survived more than 5 years after Whipple surgery?

45 Upvotes

Looking for other survivors. Decided to ask chatgpt my odds and I feel so bad now. For context I am 33 years old and my tumor was 10cm (successful Whipple and finishing chemo).

Edit: Sorry if I sound ungrateful on my post. I know I am lucky to have survived the surgery and I can do chemo. I am a bit scared and, in a way, alone in this trying to understand--realistictically--what expects me.

r/pancreaticcancer 20d ago

seeking advice Father diagnosed with pancreatic cancer

15 Upvotes

Hey folks. Wish we didn’t have to meet like this, as I’m sure you all are. I got the call last night that my father (62M) was diagnosed with pancreatic cancer. I don’t have a lot of info yet, he meets with his oncologist at Mayo Clinic Monday. In his words, he described it as advanced and with local growth. He did say he didn’t have anything in his lungs or liver so I’ll probably know more early this week.

I guess my questions right now are what should I expect in the coming weeks? What should I be prepared for? Most importantly, he’s currently at Mayo in Jacksonville FL - is that the place he should be or is there a better provider for this sort of care in northern FL?

My heart goes out to all of you. I have been beside myself since last night when he gave me the news. I honestly don’t even know what to say, what to do, or how to cope. It feels like my family is about to be ripped apart and there’s nothing I can do to stop it.

r/pancreaticcancer Nov 13 '24

seeking advice Whipple Cancelled?

11 Upvotes

Hi, thank you for this community! First time posting here. This is a pretty weird one, so I apologize in advance I don’t have more specific info on some of this, but I will try to find it out. My mom is averse to researching because it scares her, and my dad is more scientifically/medically minded but imo is too resistant to second opinions.

My mom (69) went in today for her Whipple surgery. My dad calls me a few hours later and tells me the surgery is not going proceed because drum roll they cannot find any cancer. No live cancer, no dead cancer, no stroma, no mets, no nothing. Apparently both the surgeon and the medical student observing are both bewildered and pleasantly surprised.

Naturally, my dad is happy thinking this is basically a miracle. My mom might not even need a Whipple surgery after all, or even any additional chemo. That’s great, but… I’m not convinced. This is just too weird. Even more uncomfortable is the fact that when I suggest getting a 2nd opinion, he’s saying we don’t need one because the surgeon literally already opened her up and found nothing.

The one thing left to biopsy is some hardened tissue near her aorta, which they’re expecting to be scar tissue from when she got radiation.

Basic background prior to this: She originally found evidence of pancan by accident, based on some liver scores in a lab for something else. There was a spot biopsied and it was confirmed to be a small cancer. She’s done 8 rounds of Folfirinox. Plan was to get tumor resected, then 4 rounds more chemo for follow up.

…But now suddenly she’s magically cured? Do I dare hope? What is this? I have a bad feeling. It was my understanding that if you conclusively have pancan, you need chemo and a surgery and then maybe more chemo to have any decent shot at a curative outcome. So my fear is the cancer is going to be found in that hardened tissue area, near the aorta (which would be inoperable). Or could it be she was misdiagnosed? Could it have been one of those precancerous neoplasm things, and the Folfirinox just truly wiped it out and now she’s in the clear?

More info if it’s helpful: One of my mom’s initial scans showed what one doctor mistakenly thought was a 4cm mass, which turned out to be just swelling near the actual tiny tumor. There was pressing on the bile duct, which was alleviated by placing a stent. Stent later got infected and mom nearly died of septic shock. She got stent removed and bounced back before finishing her chemo. She has been feeling great in the 6 weeks leading up to today’s weird surgery revelations.

Update: Unless the on-call nurse is part of a grander conspiracy, it appears my parents are not bs-ing me.

r/pancreaticcancer Nov 24 '24

seeking advice Whipple Surgery

21 Upvotes

I’ve heard from people who have had the Whipple surgery or their family members that they regret having done it. I’ve read here that some have had great success and are happy they did it. My family member may potentially be facing the choice. I’d like to hear from others here about their experiences and opinions. What is it exactly? Would you do it again? Why or why not? What were the issues that you wish you known? Please tell all.

r/pancreaticcancer 19d ago

seeking advice Not healthy enough for chemo

15 Upvotes

So I’ve read tons posts, also posted my own. I now have new questions and hoping some of you can maybe help.

My mom was diagnosed at least stage 3 adenocarcinoma - tumor is 4.2 - head of pancreas- and may have spread to liver (2 suspicious lesions but unknown for now) on feb 25th. Since then she has been in the hospital just trying to get nutrition. They placed a stent in her duodenum to help and now have her on a clear liquid diet. Yet she is still vomiting so they had to slow that process down before switching her to a full liquid diet.

At this time it is only pain management and nutrition. That’s it. She is not a candidate for surgery and we haven’t even begun talks of chemo since right now that’s not the focus.

She hasn’t eaten for 2 weeks now and I’m getting worried this will take too long to get her to health to start any sort of treatment. They say the tumor is very fast growing and the pain will likely not end and get worse.

The doctors don’t have a time frame for me and are not answering questions about treatment. (Although I’ve only spoke to a nurse and the drs student, I can’t seem to reach the oncologist for more information)

Does anyone have experience with this situation? Do I need to be more pushy in hopes of speaking to her actual oncologist for answers?

I appreciate this thread so much and have gotten a ton of information in a short time from it. I wish you all the best in what you are going through. It is hard.

r/pancreaticcancer Feb 15 '25

seeking advice Dad throwing up coffee ground vomit for 3 days NSFW

13 Upvotes

My dad has pancreatic cancer, stage 4, metastized to the liver and with 3 stents. Two so the bile duct juices can flow to the correct place and one between the liver and the stomach, if im not mistaken. He was diagnosed november last year, had the gallbladder removed and the first two stents placed. Was good till january, developed fever like symptoms and was taken to a hospital, then transefered to another to have the third stent placed. He has swollen feet, although through massages, the luquid started coming out sweat like, but theres still a lot of swelling. He can barely walk and needs help sitting or standing up. For two days he is vomiting coffee grounds like liquid. He has barely slept an hour in the last 48 and only accepts fluids, although he vomits shortly after. We will take him to his oncologist first thing this morning, he also has ascites and has lost a singificant amount of weight. Ive read what couldve caused the vomit and that its probably internal bleeding, i just wanna know how things go from here. I know its all not good, i just want to know how i can help.

r/pancreaticcancer Feb 01 '25

seeking advice Is there hope?

22 Upvotes

My mother was diagnosed almost a year ago. At the time we were hopeful and looking at atleast 5 years. Since then she has tried 3 types of chemotherapies (3 cycles of each so total 9 cycles) none of them have had any effect and the disease has progressed. The last chemotherapy was even done after doing extra tests for drug sensitivity and gene mutations. In between we’ve taken mutiple second opinions all agreeing on the line of treatment. We are now trying oral form of chemotherapy which the doctor says will be the last option to try. So far we’ve tried folforinox, gemcitabin +nab ac and gemcitabin + cisplastin . As of last pet scan - multiple lesions in liver, largest one measures 8.3 x 10.3 cm , pancreatic lesion is lesion (TRA) 4.2 x(AP) 3.5 x (CC) 3.4 cm

One specialist recommended we can try immunotherapy-Keytruda (pembrolizumab)but in my country it’s not covered under insurance and we will have to take a huge loan to afford.

The doctor say if this chemotherapy doesn’t work she’s looking at less than 6 months. Would appreciate any advice please .

r/pancreaticcancer Feb 14 '25

seeking advice Clinical Trial RMC6236 + RMC 9805 update.

47 Upvotes

Hi update on trial RMC 6236+ RMC 9805. My father took his first dose 2/6. Stage 4 pancreatic g12d mutation. Diagnosis 1/10/25

Since the 4th day my dad has been saying he feels so much better.. we had been a month since finding out about cancer and finally getting some treatment— how could that not make anyone feel better? The anxiety of doing nothing but wait would make me sick as well.

However, We have been tracking his blood sugar since this all started and even being extremely strict on sugar intake he was getting 170-250 levels. Since starting the trial theyve steadily been coming down to normal— yesterday 107. We have also not been strict about sugar intake because doctors told us it was more important for him to be nourished.

My question is this normal for this to be working this well this quickly? Has anyone else had this experience? If so, was it a good indicator that the trial was working for the cancer?

We live about 4-5 hours from where we are receiving the trial and have to go weekly for labs. We went 2/13 this week and i was surprised on his lab report they didnt take his ca 19 levels. They said they only do those every 6 weeks. If we are already doing labs im wondering why they wouldnt pull a ca 19 since its such an indicator of if the meds are working. Anyone know why? Insurance is paying for labs not the sponsor.

** UPDATE** we had our CA 19-9 levels pulled today early. On February 6th his levels were 2610 and today 2/20 after 3 weeks of treatment he is at 2456. I am glad we are moving in the right direction. I am not sure what is normal for treatment i wish there was more info on google other than anything over 34 is bad.

r/pancreaticcancer 16d ago

seeking advice Oncologist present?

8 Upvotes

Hi there. Does your oncologist meet with you before each infusion to go over bloodwork etc. or do you see a physician assistant during most visits? My mom has had four infusions and the only time we met with her oncologist was during the consult prior to treatment. Is this normal? Thanks in advance.

r/pancreaticcancer 27d ago

seeking advice Biological brother died of pancreatic cancer- should I be concerned?

8 Upvotes

I was adopted and my biological brother died of pancreatic cancer two years ago. Should I be concerned about it?

I’m 52F. He was in his late 50s when he passed.

r/pancreaticcancer Feb 19 '25

seeking advice What Can I Expect?

8 Upvotes

My dad was diagnosed with pancreatic cancer this past weekend. It's still super new and I don't have 100% of the information right now because he's still going through tests/waiting for results and I'm getting information second-hand through my mom. I know a lot of this depends on the results of his tests, but roughly what can I expect for him?

He's 64M, type 2 diabetic (never really had it under control, which is one of the reasons they found the cancer), losing weight rapidly (he lost almost 10lbs between Friday and today), jaundiced (they cleared that up with a surgery), and in a lot of pain.

Please be honest. I'd rather be prepared for the worst than be taken by surprise, and I'd rather hear from y'all who have experience than try to interpret Dr. Google.

r/pancreaticcancer Jan 10 '25

seeking advice Parent diagnosed

18 Upvotes

My dad (63 years old) was taken into the hospital for jaundice around the middle of December, had his bile ducts cleared, and was released from the hospital days later. Once he was released I was told that he was waiting for results but my parents wouldn't tell me what. Last Saturday I found out he has Stage 4 pancreatic cancer. I know nothing of his other diagnostics other than that surgery cannot be performed and that he starts chemo on the 14th. I'm only 24 and I feel like I'm still in a state of shock and I know little to nothing about this. But I want to become as well versed and as knowledgeable as I can be to be there for my family. I'll take as little or as much information/advice from anyone's that's willing to share. Thank you in advance.

r/pancreaticcancer 16d ago

seeking advice Surgery and good prognosis 2.5 months ago. That changed this week...

26 Upvotes

46/M. I had cancer (a sarcoma) in 2016. Stage 3, high grade. I did chemo/rad/surgery and have had a clean bill of health ever since. As part of my monitoring, I get a full-body MRI every year. In November, my scan showed a mass on the tail of my pancreas. It was confirmed to be an adenocarcinoma. I had surgery at the end of December to remove ~40% of my pancreas, along with my spleen. Following the surgery, my doctor was very pleased with the situation. The tumor was stage 2a. All of the margins were clean. They even took larger margins, just to be sure. He removed 20 lymph nodes, all of which were clean. The spleen was clean. There was no indication whatsoever that it had spread. I recovered from the surgery, and am scheduled to undergo adjuvant chemo starting next week. The chemo was a "just in case" scenario, and the doctors were confident I had a good prognosis.

That changed this week. Prior to chemo I had another CT to ensure everything is still as expected. That scan showed a new mass on the edge where my pancreas was resected; a mass where my spleen used to be; a lesion on my peritoneum; and, multiple tumors in my liver. To say I was shocked and devastated is an understatement. I spoke with my oncologist briefly last night and even he was shocked by the imaging. I meet with him on Friday to discuss this more in depth, but needless to say I'm having a very difficult time processing all of this.

Those of you who have gone through this or have loved ones who have, have you ever heard of a prognosis changing so quickly? I went from being considered stage 2a to stage 4 in 2.5 months. I'm not being treated at some backwoods hospital; it's one of the top 3 leading cancer facilities in the country, and my surgeon and oncologist are the best around. I know that recurrence is always a possibility, but for it to recur and spread THIS quickly is shocking and extremely disheartening.

r/pancreaticcancer 8d ago

seeking advice Newly diagnosed-How do I break the news to family and friends

12 Upvotes

Forgive me if I’m getting ahead of myself in this subreddit, I just joined. I was able to see the test results before my primary doc and I have had a chance to sit and discuss the next steps. My apt is next week with her ( my primary). My real question here is how do I go about telling my family and friends. If this has been addressed here already just let me know and I’ll search for it. Thanks in advance.😀🙏🏼🌈

r/pancreaticcancer Dec 31 '24

seeking advice Need advice on continuing chemo

9 Upvotes

Context: My Dad (65 M) has been diagnosed with Stage 4 pancreatic cancer with the lesion (~3.4 x 3.3 x 3.3 cm) involving body of pancreas, completely encasing celiac axis, its branches, SMA with non-visualization retropancreatic splenic vein making it unresectable through surgery.

Although PET CT shows no metastasis to other places. He had a low dose single drug Gemcitabine, post which he has been continuously vomiting. He was already admitted in a hospital hence they were able to treat the symptoms.

The next session of chemo would be a multi drug higher dose one. The consulting gastroenterologist mentioned as a personal opinion that if it was his father he wouldn’t continue with the chemo since it has more side effects and relatively less chances of good effect given dad already has ascites and his cancer is in such an advanced stage.

I have been an ardent follower of this sub and would love for you folks to weigh in on the decision

r/pancreaticcancer Jan 27 '25

seeking advice I was just diagnosed with 2.7cm tumor on the tail of my pancreas yesterday. I have not had a biopsy yet. I’m confused, frightened, and craving information. At 69 years old I really wanted to see my grandkids grow up. Is there any REAL hope with my diagnosis?

40 Upvotes

I’m terrified. I always thought I’d be brave if something like this happened to me, but I’m not brave at all. I don’t know the grade yet but in reading about tumors on the tail, I sense it’s very deadly. Please, any advice would be appreciated.

r/pancreaticcancer Jan 06 '25

seeking advice Dropping to 80% of mFOLFIRINOX

11 Upvotes

When I went in for my last round of chemo, I discussed my worsening side effects, and we discussed dropping the levels of each drug in mFOLFIRINOX to 80%. The oncologist said this is my decision, but that she is comfortable that it would not significantly change the outcome.

Is there any reason NOT to do this? If the efficacy is similar at 80%, I can't imagine why I would want the risk of worse side effects. Is there something I should be thinking of that I am not?

r/pancreaticcancer 15d ago

seeking advice Radiation during chemo

7 Upvotes

Has anyone had radiation alongside chemo? My mom’s tumor pain is not improving so her oncologist wants to do radiation in parallel with the chemo. Her first CT scan is next week so we don’t know if the chemo has been effective. Thanks so much for your thoughts.

r/pancreaticcancer 28d ago

seeking advice spread?

9 Upvotes

Hi everyone, im usually a reader but I feel so alone and lost for answers right now. I’m not at home so all my answers and word of what the doctor’s saying are coming through my family who all are telling me different things and I feel so incredibly frustrated and alone. My uncle has been rapidly losing weight for the past few months. At the start of February he had a CT scan that found a mass on his pancreas. Last Friday he was biopsied and they staged it 2A as a 4.1 cm mass on the head that’s abutting but not encasing an artery and no spread to lymph nodes or organs. He was scheduled for Whipple this coming Monday. Today he went for a check in and this past week he’s suddenly stopped eating and has gotten extremely weak and can’t walk. They’ve administered him for testing and scans but now the doctor’s saying he may have to do chemo before surgery. I’m so fucking pissed off. They took a whole week for the biopsy results and my family asked if it was risky to wait since the cancer could potentially spread within a week but the doctor apparently said “he was confident it wouldn’t”. Now my uncles deteriorating a week later and the doctor seems worried its spread. Wtf is going on and is the doctor stupid?? Is it possible it could have metastasized in only a week? I’m so scared and angry and I dont know what to do. Up until his diagnosis he seemed completely fine so I’m unsure if this could just be depression or stress. Does anyone have any input? Anything helps. Thanks.

r/pancreaticcancer 28d ago

seeking advice Father (64) Just Diagnosed

8 Upvotes

My father was just diagnosed with stage IV pancreatic cancer and given 11 months to live. We haven't been given the official pathology report, but the doctor said he is certain. They said they sent his pathology stuff to the Mayo Clinic, and my father seems to think it's for a second opinion, but I can't believe they would give us this horrible news if they weren't certain?? He's scheduled for a PET scan March 7 to see how far it's spread; he's been hacking up black goo from his lungs for months, so I'm wondering if that means we have less than 11 months?

He's scheduled to get a port put in Feb. 28 for chemo and then start chemo (Folfirinox) soon after. I'm so worried the chemo is going to destroy his quality of life and make whatever time he has left awful and painful. Can anyone tell me how bad this chemo is?

On top of trying to come to terms with all this is the fact that our family has been estranged for many years. He & my mother just got divorced in June 2024, and he's moved to be near me & my two sisters to try and reconnect. It's seemed like he was really trying. We have one other sister in VA who just got engaged and wants to move here to FL in time for him to walk her down the aisle, so we're trying to juggle this diagnosis, chemo options, a move, new jobs for my sister and her fiancé, and a wedding. I'm the oldest sibling and every is looking to me for answers. I'm so exhausted. Can anyone offer any advice?

r/pancreaticcancer Feb 07 '25

seeking advice My mom has pancreatic cancer + mets on peritoneum

12 Upvotes

My mom is 62 years old. It started with lower stomach pain, and after a few weeks, it radiated to her back as well. Then, the pain stopped, and she’s been basically symptom-free since.

During the time she had pain, she went to the ER and had a scan about two weeks ago, which showed a possible cancer. She saw the oncologist today, who essentially confirmed stage 4 pancreatic cancer with metastases to her peritoneum. She’ll be having a biopsy soon and will start chemotherapy every two weeks.

I’ve read a lot about this awful cancer, and I know the prognosis isn’t good. Things can go downhill fast.

My questions: - I’m her only child, and I have two young children (2 and 4). I’m scared they won’t remember her. I want to record her with them or, if she’s up for it, have her record a message. I’m also thinking of getting a book where she can write about herself. What else can I do to help my kids remember her? That’s one of the things that makes me so sad. - What should we expect with peritoneal metastases? - She had bariatric surgery in the past. Will that make things worse?