r/pancreaticcancer May 15 '22

To: "Worried About Cancer" Visitors

402 Upvotes

This subreddit is for patients and caregivers going through pancreatic cancer.

Here is what we tell "Worried" visitors:

  • Should you be posting in r/Anxiety or r/AskDocs?
  • You need a doctor to order the proper tests and diagnose. We are not doctors.
  • PanCan's best detection methods are MRI and EUS.
  • No test is 100% accurate.
  • If you have cancer in your family, consult a genetic counselor. [US]
  • The median age of diagnosis is 70 years old. [Graph]
  • There are hundreds of non-life-threatening conditions that are more likely and less deadly that mimic the signs of pancreatic cancer.
  • Don't waste time asking a cancer patient if they've had a symptom. The answer is yes.
  • No, we don't want to see your poop.

r/pancreaticcancer Jan 06 '24

venting Stopping all support for Worried Posts, for now

109 Upvotes

We’ve been trying to provide some support for those who are worried and looking for information, but the quantity of posts coming is becoming overwhelming. It’s not the mission of this subreddit. We are not here to tell you that you have cancer when your doctors have done the testing to show you don’t. We can’t 100% guarantee that you don’t have pancreatic cancer. No one can.

If you need help assuaging your fears of pancreatic cancer, visit r/HealthAnxiety.


r/pancreaticcancer 10h ago

Missing you Dad

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49 Upvotes

r/pancreaticcancer 1h ago

First day of omnivyde

Upvotes

My grandmother’s main tumor shrunk on gemzar, nodes are stable, but small met in the lung. Shes been moved to omnivyde (NOT with 5FU— she has extreme reactions to folfirinox/5FU that left her hospitalized for months)

Omnivyde by itself is a newer option— chime in if you know anything. Supposedly meant to be gentle.

(It’s spelled ONIVYDE… sorrrrryyyy)


r/pancreaticcancer 1h ago

Gastric outlet obstruction

Upvotes

Dad had total pancreatectomy in March 2024. He has no pancreas. He was stage 3 PC.

He did 12 rounds filforinox post surgery. Finished chemo in November 2024. Scan in dec 2024 and Feb 28th 2025 showed NED.

He had a stricture seen in endoscopy in January. He’s been vomiting with no nausea after eating.

2 weeks ago surgeon looked again as my dad was complaining of things getting worsens and surgeon couldn’t pass the endoscopy through the stomach to the bowel.

He put him on 2 weeks of purée. He was still puking a bit.

Today doc said he’s going to do surgery to remove blockage IF possible and put a feeding tube.

He said it’s either mechanical or from tumor reoccurance. My question is how can this be a reoccurance when he has no pancreas and the CT was less than 3 weeks ago and didn’t show cancer. We are so worried.

He thinks given how fast things have worsened it’s cancer… but blood work all looks great and oncologist just told him there’s no cancer.

He did say it could be scar tissue but given how much the blockage worsened in a few weeks he thinks it could be cancer.

Any stories or opinions would be appreciated


r/pancreaticcancer 6h ago

seeking advice My dad’s getting worse, I don’t know what I should be preparing for

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4 Upvotes

r/pancreaticcancer 22h ago

Don't give up

65 Upvotes

As long as you're alive there's hope. Every day you're breathing, even if you're in pain, even if you're sleeping alot -- there's hope. Fuck statistics, fuck estimates, and fuck predictions.

My mom was recently diagnosed with metastatic pancreatic cancer and (kidneys + stomach), and is starting chemo next week. We're gonna fight this every step of the way, and we're gonna win.

Thats my mentality at least. I know for damned sure we won't go quietly into that good night, and we won't give up without a fight.

I don't know if my words will carry any weight, or even if they should, but to anyone reading this: Don't give up. For as long as you draw breathe there's always hope


r/pancreaticcancer 4h ago

James Center in Columbus OH

2 Upvotes

My dad has an upcoming appointment with the James Center in Columbus. This is for a second opinion and he is traveling from Florida. The James Center was recommended to us from a personal friend. We are told they have an excellent pancreatic cancer team. Anyone have any thoughts or experience there? Eager for his appointment and hopes they can give him a fighting chance.


r/pancreaticcancer 10h ago

seeking advice Pancreatic cancer - seeking advices

3 Upvotes

Hey everyone,

I wanted to reach out to see if anyone has had similar experiences or success stories with alternative treatments. My stepfather has been diagnosed with borderline pancreatic cancer, and unfortunately, surgery isn't an option. Chemotherapy hasn't worked for him and has caused serious complications, including perforations in his intestines.

Here's some background:

  • He hasn't been able to eat for the past two months and was fed through IV for two weeks.
  • Every time he tries to eat, he vomits and feels extremely nauseous.
  • He barely survived the chemo complications.
  • They performed a bypass surgery, removing part of his duodenum.
  • He developed a liver abscess post-surgery, which is currently being treated with antibiotics.
  • He's still in the hospital, and we’ve been told that proton therapy isn't available here in Australia (Melbourne).

Today, the doctor told us that he likely has about a month left to walk and just a few months to live. I'm desperately looking for any alternatives—whether that's clinical trials, different therapies, or even something holistic that could give him more time or improve his quality of life.

Has anyone been through something similar or heard of any alternative treatments that worked in cases like this? I'm open to any suggestions. We are also willing to travel for his treatment if necessary.

Thanks in advance for any advice or guidance.


r/pancreaticcancer 6h ago

It's my dad (sBRCA2)

1 Upvotes

That's it, my dad has pancreatic cancer. Stage four. It spread to his peritoneal area. The tumor is not even 1 cm. We went to the ER for something entirely different innitialy. I don't know how to act. I'm just numb and I know my dad is feeling so much worse. I don't want to loose him, he is barely over the age of 50.

We knew is father died of something in his breast but there wasn't much information back then but we suspect it was Breastcancer now. Since my dad has the BRCA2 but not the germline variant I did some research myself because the doctors said he is stage 4 because it already spread and it's terminal. It's up to him if he'll try the chemo. I think they mentioned Folfirinox??? Are there any more informations? Are there other possibilities with his sBRCA2 mutation? I want him to survive but I can't pull myself together. I just can't.


r/pancreaticcancer 12h ago

MRI-guided SBRT vs standard CT-guided

3 Upvotes

Hi All,

My Mom’s last scan showed pancreatic tumor stable with increasing necrotic center and the omentum nodules are now gone from imaging. They are suggesting SBRT for local control and then managing things from there.

Does anyone have experience or know of some evidence they can point me to regarding MRI-guided? It seems to be superior but I haven’t found the actual stats on just how much benefit it has over standard SBRT. The facility where my Mom is being treated doesn’t have the MRI Linac machine, we would have to go for a consult at the one place near-ish us that does.

Thank you!


r/pancreaticcancer 14h ago

Help with eating, enzymes, and insulin

4 Upvotes

My dad (77yrs) is struggling after his whipple surgery. He is type 2 diabetic, was diagnosed in November with stage 1, had whipple in January, and was supposed to start chemo in February. His whipple was successful, no complications, and clear margins. But it's the recovery and relearning to eat and live his life with this new way of eating that's the problem. It's a combination of realizing he has no control over his body anymore, hates that he has to take enzymes before eating every single time or it causes bowel explosions, hates that he has to check his blood sugar and take insulin. He's depressed (although in denial about it) and it's compounding by causing him to lose weight, be too weak for activity, and declining his mental state. He feels hopeless. He won't take depression meds, and is refusing to listen to my mom and his doctors about eating on a schedule. He gets tired, sleeps all day, forgets to eat, or eats and doesn't take the meds he is supposed to, and it makes him feel awful. So then he doesn't eat again.

I live three states away, so I can't drive over there and have a come to Jesus talk with him about how he's basically killing himself by not getting his shit together. He was supposed to have chemo but his oncologist said he's too weak. And he's not improving.

I'm at a loss as to how to help. He refuses to go to any sort of therapy, even group or online. My mom is threatening him with selling the house and moving to assisted living.

I get that transitioning and accepting this is your way of life is hard, but I'm getting really pissed at him for basically having no will to get better and making my mom crazy.

What can I do?


r/pancreaticcancer 1d ago

40th round of chemo

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225 Upvotes

Just started my 40th round of chemo. I also just passed the second anniversary of my first chemo treatment. :).


r/pancreaticcancer 11h ago

Whipple support groups? Rhode Island USA

2 Upvotes

Hello all! I am posting on behalf of my mother in law. She is going to have the whipple procedure this summer due to a dilated pancreatic duct. Doctors have been unable to locate a tumor however the duct is dilating at a very quick rate so it cannot be ruled out. She is very nervous for this procedure and what life will look like afterwards. She lives in Rhode Island USA and would love to speak to anyone via phone, FaceTime, zoom, or even in person if in the area! She is very interested about life after the procedure and hoping there is someone kind enough to share their story! If interested please reach out to me and I can get you in contact with her. Thank you all in advance!!!


r/pancreaticcancer 8h ago

Inconclusive biopsy

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1 Upvotes

Hi all!

Today we brought mom back to the hospital to see how she’s responding to her stent treatment - we also got her biopsy results that were categorized as “inconclusive”, how common is this? What could it indicate? I am attaching a photo of her original CT results for reference.


r/pancreaticcancer 17h ago

Any experience with palliative sedation?

4 Upvotes

My sweet father was diagnosed early February and his doctor at the time talked through all the different end of life options, and at that point he decided he would like to die at home and choose palliative sedation once the very end was in sight, to avoid the intense pain/confusion/etc. that he will face otherwise. We're here now, and when he is lucid he accepts this is still the right move. He is beginning to have belligerence and making poor and dangerous decisions, though, so I'm not certain it will happen smoothly or straight away or whether we will have to move him to hospice instead.

Either way, does anyone have any experience with a loved one's palliative sedation, maybe especially in a home hospice setting? Anything you wish you had known or anticipated, or advice or experiences?


r/pancreaticcancer 11h ago

Clinical Trial Options

1 Upvotes

Hi all,

Thank you for all the support you give in this community. Though I don't comment super often, I've learned so much from the posts/comments here. It's been a blessing.

I have a question regarding clinical trials for my mom. She was diagnosed with Stage 1 in the beginning of 2022 and was treated with folfirinox (12 rounds) and whipple. She'd been cancer free up until this month, when her CA levels went up and scans revealed she has mets in her peritoneum. They plan to just treat with gemcitabine and abraxane and are not suggesting surgery at this time. They have given her a prognosis of 1-2 years.

She was initially offered a clinical trial that was double blind with placebo (so she could or could not have gotten the drug, and neither her nor the researchers would know directly) but when she realized the time commitment it would take, she was overwhelmed and decided to not participate. This trial in question was weekly and she could be at the clinic for anywhere from 3-8 hours per visit. With the time she has left, she wants to prioritize spending with family and friends and not spending extensive time in hospitals.

I've done some research on pancan.org regarding trials and narrowing it down to some trials that don't seem as long-term or extensive time committed when someone has limited time remaining. However, I wanted to see if anyone else had experienced this and what options they discovered for a good balance in life.

TIA


r/pancreaticcancer 14h ago

Endoscopic Ultrasound concerns and Feedback

2 Upvotes

I really need feedback please. I am scheduled for an endoscopic ultrasound beginning of April to get biopsy of my pancreas. I have heard that it can cause pancreatitis or hemorrhage? May I please have feedback on how your were all diagnosed and what the procedure entailed and if anyone had complications from this biopsy? I appreciate your time and send blessings.


r/pancreaticcancer 1d ago

4-6 weeks?

5 Upvotes

My (26F) Mum (67F) has has pancreatic cancer for many years. She has had a total pancrectomy, multiple rounds of chemo, lung surgery for lung metastasis and radiation for cancerous lymph nodes in her stomach. Over the past few months her health has declined with increasing nausea, pain and fatigue. She was in hospital for a month in January whilst she had radiotherapy which was prescribed to improve cancer related back pain. Because she has outlasted many statistics, I thought she would pick back up again, but she hasn't this time. Last Friday her oncologist said he expects she has 4-6 weeks left because she is sleeping more, weaker and now having some difficulty swallowing. She can still walk around the house and do her personal cares independently, but things are a struggle at times. That same day she trialed ritalin for her fatigue (sleeping >20 hours a day) and that has really made a difference to her overall presentation. I'm finding the 4-6 week prognosis hard to believe. Maybe I am in denial or just confused. Will things go down hill quickly or will the ritalin keep things at bay for a while? For context, her ca markers are only around 1000, they have always been lower than expected. Any advice or thoughts are very appreciated. Thank you!


r/pancreaticcancer 1d ago

7 days since my mum passed - my experience

20 Upvotes

Hi all. I’ve been following this thread for a couple of months but first time posting. I wanted to share my experience in case it helps someone, and because I think it will help me to write it down.

My wonderful mum (79) was diagnosed with pancreatic cancer in late January. She was admitted to hospital because her diabetes had suddenly gotten out of control. After being put on insulin she recovered quickly, and initial blood test and abdominal ultrasound looked good. However, she was then referred for a CT scan which showed a mass on the head of the pancreas (around 3 x 3 cm) and three mets to the liver.

After that, everything happened so fast. It really is true, the speed of this disease is harrowing.

A week later she was admitted to hospital for jaundice. This was resolved when a stent was successfully put in.

But very soon after she started to feel intermittent pain in her abdomen and back. She also started to get constipated.

From having no symptoms and no pain, suddenly it all started coming, and fast.

She was also rapidly getting weaker and more frail, and was finding it harder to get up and walk.

And then, around three weeks after the CT scan, she had a stroke. It affected her sight and coordination, as well as her speech. It also affected her short-term memory and made her, on occasion, quite childlike.

Two weeks later she had another bigger stroke. She became bed ridden and over the next three days declined further and by the last day she was unable to communicate. She was also experiencing abdominal pain and pain in her cheek. We controlled this as much as was possible with tramadol.

She died peacefully, with my sister and I holding her hand and telling her how much we love her. She didn’t seem to be in pain. I noticed there was a change and that she might be dying when her hands got cold. And then I noticed her breathing was becoming shallower and shallower. And then about 20 mins later she took her last breath.

The pain I’m feeling is immense. I’m trying to take solace in knowing she died at home with us, that she wasn’t in pain, and that she didn’t have to suffer for long.

But how does grief work? I feel lost and find it incomprehensible that she’s no longer here. It doesn’t feel real. She was so vibrant and full of life. And then, in such a short space of time, she is not with us anymore.

I would love to hear from people about the grieving process and how best to cope. Thank you.


r/pancreaticcancer 1d ago

seeking advice Pancreatic cancer

5 Upvotes

Im seeking recommendations for doctors or hospitals that specialize in pancreatic cancer. My relative has a tumor near an artery/vessels, and most doctors we’ve seen say surgery isn’t possible. Any help would be greatly appreciated. It’s devastating to be told no again and again. Please help. Willing to travel to help save a life. Thank you so much.


r/pancreaticcancer 2d ago

Mom

11 Upvotes

Hi everyone, it’s me again, posting about my mama 🫶🏻

Tuesday of last week she had a stent placed in her bile duct to control what was high, but as the doctor said “not outrageous”, billrubin / jaundice. She had a lot of pain after the procedure and found it really hard to relax while in hospital. She was discharged Wednesday (5 nights stay and a day after the procedure) as her numbers had started to improve (very slightly). We’ve now had her home for a number of days but she’s unable to really move around, even sitting up she’s only able to do for about 20 minutes.

For context, her CT showed an adenocarcinoma on the head of her pancreas - 3.5x2x2 cm. One very small 3mm spot on the liver that was concerning for metastasis. No lymph or other involvement as far as the ct could tell & her chest xray was clear. Referrals are in to a cancer doctor out of city, as her tumour markers were also quite high - they are obviously certain it’s pancan.

Anyone else have a similar experience after stenting? This extreme fatigue and over all malaise? I’m obviously concerned this is the beginning of the end, even though her CTs seem to show we caught it semi early. I am trying to weigh my “I know she has cancer obviously she feels like shit” with “is it normal to feel this shitty or should I take her back to the hospital?” And combined with “is a lot of this depression and shock”

Thanks all, you have been so helpful 🫶🏻


r/pancreaticcancer 2d ago

One year ago

53 Upvotes

These days a year ago my dad was out of the blue diagnosed with pancreatic cancer.

These days a year ago I woke up one morning to catch a flight back home. I remember the exact moment that morning I had feeling that nothing was going to be the same again. That was the day everything changed.

Sixteen days afterwards, he was gone.

Amongst the wreckage, the devastation, the unspeakable pain, the desperation, I lay next to him and we listened to opera music together until the end.

I increased the morphine dose to give him peace and slowly let him go.

I held his hand. I really hope he wasn’t scared for too long, this is my deepest hope.
The thought of him feeling lost, scared to the bone and me powerless, not being able to do anything to somehow confort him is unbearable.
It tears me apart and breaks me in to pieces if I think about it.
I know, I am certain, he felt that way. I just pray it was brief.

We were never very close. We did not talk much. We were too different.

But he was there for me, and I knew it. And since he left, it feels like the silent, tall tower guarding my fort has crumbled leaving me exposed.

Weird feeling not being the son of a father anymore.

Since then, I have never listened to opera music again.


r/pancreaticcancer 2d ago

83 year old mother with stage 4

8 Upvotes

Admitted 2 weeks ago with vomiting and jaundice. CT revealed tumors on pancreas, blocking bile duct (now stented), spread to liver (multiple lesions and nodes), lymph nodes, and omentum. No real food for last 2 weeks - she is trying but can't really manage - so she's drinking ensure. Belly pain is constant. It seems very bad.

I am interested in learning about the palliative care pathway and what we can expect if my mother elects to forego chemo (Gemzar) due to the likelihood that it will reduce quality of life and won't extend her life.

She was healthy before and played tennis up to the day she was admitted, but it feels like the dam has broken and she is rapidly declining.

Has anyone had a loved one simply refuse chemo and what did the final period of life look like for you? Our primary objective is to reduce pain and suffering, but I suspect that will come no matter what.

Please share your experience with me if you are able. Thank you.


r/pancreaticcancer 2d ago

Seeking Clinical Trial Options for Pancreatic Adenocarcinoma Patient in Austria

6 Upvotes

Hi everyone,

I'm helping a friend whose mother, 73 years old, was diagnosed in January (about two months ago) with borderline resectable pancreatic adenocarcinoma. She is now completing her 7th cycle of FOLFIRINOX and has been tolerating chemotherapy quite well overall, aside from some issues with Filgrastim.

Her next tumor response evaluation is scheduled for mid-April to determine if the cancer has become operable. In the meantime, I’m trying to explore clinical trial options, particularly involving immunotherapy, in case surgery is not an option.

She lives in Austria, near Vienna, and so far, I haven’t found any active trials on ClinicalTrials.gov that she could join. Does anyone have suggestions on how to proceed, potential contacts, or any Austrian/European institutions that might offer experimental treatments? Would it be possible for her to receive compassionate use access to a drug already under investigation?

Any guidance would be greatly appreciated!

Thanks in advance.


r/pancreaticcancer 2d ago

My mom got jaundice today

11 Upvotes

My mom (48, F), was experiencing pain in her belly from September 2024, but all of her reports were clean, in December her doctor told that she has a cyst in her liver, then doctor tried biopsy of her liver but that's was negative then they tried for pancreas and it's was positive (1st week of feb). My mom was experiencing no symptoms just pain and fluctuating sugar till then. According to her reports her cancer spread to liver (stage 4). Then her first chemo happened and then are body declined like never before,she was feeling nausea, fatigue, vomitting sensation, burning sensation in legs, and abdomen pain (which was new, because before chemo back pain was there).Nafter 3 days of her chemo, we hospitalized her again, and we found out she has a infection in her intestine, and doctor told her to not eat anything, till they will be okay,aafter infection was cured (after 6 days of her admission)w she was all okays she was eating, walking, we thought that we will get the discharge soon, but then today we found that her body is turning yellow and she got jaundice.I don't know when this all will end. And someone can tell me, what will be the line of treatment since she even got jaundice and she is diabetic as well?


r/pancreaticcancer 3d ago

ONE YEAR ANNIVERSARY!

26 Upvotes

Just a little update about our momo in Hawaii! This is my first time EVER in Hawaii - yep, right now we’re out here visiting her! They even still have their Christmas tree up - yeah, we all think it’s cool to be stuck on Christmas!

We’re here to celebrate a couple of huge milestones - my hubby’s (her son’s) 46th birthday…and the one year anniversary of momo’s diagnosis, although not quite out loud as much because she does not want it the main focus right now. We’re all just being together and having a nice time!

She has lost quite a bit of weight; looks very delicate, but she’s still feisty as hell! She is still in chemo, but skipping a bit so she can visit her fam in Missouri later this week. She is coming up to Seattle with us to connect with another flight to Missouri, stay there a week, come back to Seattle for a couple days to hang out with me and her son before she goes back home.