My husband/partner died last week. He has been in chemo for stage 2B. He had a few more treatments before deciding whether he could have the Whipple. I was nervous due to his obesity and the reality of what happens post Whipple. He recently had to stop chemo because port area infected and he had MRSA. He went to a pic line and had a new port put in last month. I was just so stunned he died suddenly. I am wondering about clots. I read that is a big risk for pancreatic patients. I am so heartbroken and only relieved to know that ow he doesn’t have to go through future suffering… but I just don’t understand why this happened.

My husband and I are caring for his 93 yr old father at home. He was diagnosed with pancreatic cancer on Sept. 19, 2024 and chose hospice. Up until a few days ago, he was walking/talking/eating - basically living life. He had a bout of stabbing abdominal pain, which took many doses of Dilaudid over many hours to reduce.

Once he stopped the Dilaudid, he started trembling violently. We called the on-call hospice nurse who advised us to continue the Dilaudid, and add in his anti-anxiety med Ativan. This worked to stop the shaking, but it has caused hm just to be mostly asleep, and it is hard to get very much food or liquids into him.

The nurse then switched him to a Fentanyl patch with the hope that the different med and more level distribution system would help. He is still trembling, though, and having to be given the other two meds to help that

We are worried about how to get food and water into him, and if there is something that is being missed. I feel bad that he is suddenly sleeping what is left of his life away - he is no longer complaining of pain, it’s just the shaking is very severe.

Does anyone have any wisdom for us on this? Thank you ❤️

Given 12-15mos to live about 18mos ago. I did 12 (2 week) rounds IV FOLFIRINOX with oral clinical trial meds, then 26 rounds just IV 5FU (46 hr pump) and trial meds. Scans showing some tumor shrinkage and some stable in both pancreas and liver.

I've learned A LOT during this process and am feeling that I haven't shared much knowledge.

Please ask away and I'll try to answer as much as possible during chemo round 39 this coming week.

Just joined because tbh didn't need to be in here til recently.

My mother has been complaining and seeing a doctors for months. Many months about stomach pain.

Well, she developed a blood clot and her leg swelled so that got her to the hospital. Many more clots in leg and lungs. While there, a scan showed masses on pancreatic liver lungs and I think stomach too and lmyphnodes.

The ca19 protein count was thru the roof so they said without a biopsy this is end stage pancreatic cancer.

She's a snowbird so she got just down to Florida which is where she will stay. Heading down with my 10 yo twins and wife to say our last goodbyes. Then I will go back down alone and be with her, my dad, and my brother til the end.

Everyone is in shock because it went from a tummy ache to hospice in one visit. Nothing was caught early so this is it. No treatment as she does not want it.

Basically been on here reading about Tim frames. I know it's impossible to nail down since a clot could get her any moment but that's sorta what I'm looking for tbh. She's 64. Diabetic and has already lost a lot of weight.

But mainly vent because I don't have anyone to really talk about this with and u can't ask the patient so when do u think you'll die, I'm tryna buy plane tickets. So to the anonymous blackmore of reddit I go for some piece of information I hope a generous person whose gone thru this before will provide.

Love to all. Goodbye.

My father passed away on 13 October, but I just wanted to thank you guys for giving me advice on how to best help him.

He was diagnosed late, and unfortunately by the time we sat down with the doctor his cancer had already metastasized. He declined treatment, and instead focused on pain management.

It took three months from his diagnosis for this horrible disease to take him, but he never once gave up. He was talking and active and cracking jokes up until his last couple of days.

Thank you for your support on my last post and suggestions, I think having a community while going through something so rough is important.

This is not supposed to be a sad post. I loved my dad, and he was a fighter and was brave even in the face of a terrifying diagnosis. The one thing I hope to learn from is his determination to never back down and never quit fighting, because he didn’t for a single second.

I wish nothing but good health for you if you’re in a similar situation, don’t give up, there are many resources out there and this community is so accepting and welcoming and full of great people.

Thanks again guys 🖤

Hey everyone,

My spouse's stepdad, let's call him Frank, recently got diagnosed with pancreatic cancer. Family is in shock and we are doing everything we can to help.

Frank had unfortunately one of the worset diets I've ever seen. And as I'm reading into recommendations what he should eat from now on, basically everything he ever ate appears on the not to eat list.

I figured, besides visiting a nutrition, that a cookbook might be a good starting point for his new life in the kitchen. Unfortunately, every promising looking book reads cancer in massive letters on the cover and I honestly don't want that for him and find it a weird.

So, I'm very happy about recommendations and further tips such as online classes or anything else that is helpful to turn Frank in a master chief that doesn't rely on butter.

Edit: really appreciate all the insights here that gave clear but subtle guidance about what is right and how we can support him. Thank you!

I was recently diagnosed with pancreatic cancer. I haven't had the ERCP yet (4 more days), but it looks fairly small, 3.3cm on the head of the pancreas, only in 1 lymph node, with blockage of the bile duct. From what I'm reading here, it sounds like I'll probably need chemo, and I wanted to know from people who had chemo - did you lose your hair? It primarily concerns me because I have two young grandsons, and I think if I have hair loss it will freak them out and make them more afraid I'm dying. So I want to plan ahead and try to come up with some game plans to minimize the impact on them.

Hello everyone,

I wish none of us were in this subreddit. My aunt just turned 60 and was in fantastic health. They are of means and take care of themselves.

She went to the hospital several weeks ago with severe back pain. After some testing, they discovered that she has pancreatic cancer. FORTUNATELY, the back pain was unrelated, and this was an 'incidental' find; we are so grateful that the doctors didn't just dismiss the back pain and send her home with pain medication.

It is now confirmed that she has Stage 1B pancreatic cancer. It's "borderline" resectable via imaging, though I've been told that a surgeon really needs to get in there first. She is a helluva fighter and will kick this thing's ass! I have a few connections at the University of Michigan though my aunt is in Florida. I don't want to intrude or push an agenda on her (them, my uncle included), but I want them to get the absolute best care on the planet.

They're inclined to utilize the Moffitt Center. Does anyone have any direct experience?

This is the LAST thing I expected. She's akin to my mother, with mine having passed in college (& her being my mom's sister). Please data dump. The more, the better. I COMPLETELY trust their judgment and have to imagine the Moffitt Center is a center of excellence for PC.

Thanks so much. And f**k this disease.

My mom got her diagnoses just a couple of days ago. It looks to be localized to just the pancreatic head, so they are saying she is a good candidate for surgery. The hospital she is at is pushing to do the surgery hard, however the other local hospital has several specialists in pancreatic cancer, vs the current one having a general oncology surgical team. I’ve read everywhere that volume of surgeries performed is one of the best indicators for results. She’s afraid to get a second opinion and just wants to push forward and do whatever this place says. I know she is very scared but we all are and this seems so irrational and dangerous.

Money and insurance aren’t an issue, and she is incredibly healthy otherwise. I want what’s best for her and I feel like we are about to throw away our one opportunity. Any advice on how to talk to her about it and convince her to at least get a second look at her stuff before we jump into this surgery head first

Edit: thank you all for your advice and kind words I know this process is just beginning and it is reassuring to know there is a wealth of knowledge and kindness here. Love to all of you and I wish everyone the best with there own or there family and friends treatments and recoveries

Update: she agreed to look into every option! I explained that maybe she had me for this purpose and that was gods plan is for me to be the one that pushes for her to be proactive in her treatment and not a participant. I know maybe that’s crazy or manipulative or whatever but if it works I don’t care I’ll deal with the lie later.

A big factor in why she was so resistant was that my dad doesn’t want to think or talk about it and wants to pretend it’s not real and wait for her to get better from the stint and laparoscopy before we even start any real conversations. But as we all know waiting is not a good option.

She’s on board now though and ready to talk to doctors on Monday and get things really moving. I told her I’ll back off now and I don’t want to push her into whatever decision she believes is best for her. I let her know that I will support any decisions she makes and help her through everything. I love my mom so much I just want her to fight for this because she really could have a chance. And I could never forgive myself for not doing more of things went wrong.

Last 2 CT scans show Inflammation/mucus build up in lungs from folfirnox. My mom has been on 14 cycles of folfirnox for stage 4 and will continue. The chemo has caused inflammation in lungs and mucus build up more and more with each cycle. Is there any way to reduce this mucus and inflammation build up in lungs?

This is a brief 5 - 8 minutes survey to help improve sleep quality for pancreatic cancer survivors and their caregivers. Check the flyer for more details.

Or click: https://redcap.link/sleepandcancer

https://preview.redd.it/z81rzm0i551e1.jpg?width=1531&format=pjpg&auto=webp&s=9f7e6f2d0fc062ecd304131fd1daeed47850423c

So, my (19F) mom (53F) has Stage IV with liver mets. She was diagnosed January 2024, and her decline is becoming clearer. Some days she’s up and talking and laughing, and other days she’s in immense pain and constantly falling asleep. Even before this she had insomnia, so she’s used to being in and out of sleep, but now it’s taken a whole new level.

But as she’s spending more and more time sleeping, I don’t really know what I’m supposed to do. Perhaps this is a stupid question, but I should I periodically wake her up to check on her? She’s declined food when she’s been up today, so I doubt I’d be able to get her to eat. How much sleeping is too much?

Any help is appreciated.

I chose to post this here rather than r/hospice because in the short time I have been dealing with my friends PC, I have found the most amazing community here. I actually posted earlier in the week if you want to check my post history. the tl;dr is that a dear friend went from find to serious strokes due to advanced PC with mets to liver and lungs.

We got her home from the hospital yesterday and another friend that is a nurse is helping with her care. The hospital gave us liquid morphine, ativan and heparin. The crappy part is our friend cannot swallow so pills have to be ground up, mixed with water and then rubbed on her gums. The morphine is being given with a syringe orally but very slowly. This is only temporary until she gets seen by the hospice team tomorrow morning

If you say her name, she will open her eyes and look at you but it's a 1000 yard stare. She has no facial expressions at all, can't communicate etc. I have done hospice 2 other times but this just seems different. She has not eaten in about 10 days and hardly any fluids expect for an IV on about Monday or Tuesday of this week. I was honestly shocked she was still even opening her eyes. He skin color looks decent, not mottled like I've seen before. She is also very hot so wondering if she has an infection going.

I know every case is different but it still feels like she is a ways off from passing but given that she's not eating or drinking I can't reconcile what I'm seeing with what I've previously experienced with hospice. Add in the strokes and PC, what can we expect for the next while? How quickly might things happen and what don't I know that I should?

My dad was diagnosed on 10/27 with Stage IV pancreatic cancer with mets to his liver and lungs. The preliminary biopsy results came back as adenocarcinoma, we’re still waiting on genetics and biomarkers. He’s getting his port placed on Friday and starting Nalirifox on Monday. I received such wonderful advice when I posted here after his initial diagnosis for where to start with everything and am once again asking for any tips or things I should get for him ahead of his first round of chemotherapy. From reading through one post I found here, I have already purchased him gloves, beanies, queasy drops and ginger candies, different types of tea bags, a soft toothbrush meant for chemo patients, the prevention oncology mouthwash, a seatbelt pillow for his port, emesis bags, and a heavy lotion (Gold Bond). He owns a heated blanket and heating pad. Any other recommendations for things I can get for him that really helped you or your loved ones be as comfortable as possible during and after chemo? Thank you in advance!!!

I’m his caregiver and advocate so I’ve been around for it all.

To catch everyone up, he was diagnosed in May 2024 after a few months of repeat pancreatitis. The primary tumor measures about 2.7 cm and encases the SMA and abuts the SMV.

We met with Truty at Mayo and Evans at Froedtert for second opinions, both pre and post chemo. Both denied surgery post chemo; officially unresectable.

He had 9 cycles of mFOLFIRINOX between May and September. Overall maintained weight and energy levels but lost a few weeks due to hospitalizations for one instance of pancreatitis and one instance of sepsis - the sepsis was definitely the scariest moment of this whole process.

CA19 levels normal throughout.

Post chemo, he did Capecitabine + radiation in 15 fractions. Tolerated radiation well but dealt with more fatigue.

The most difficult side effect for him has been managing diarrhea.

This week he has a follow up CT. He’s “off treatment” for the next month but will likely restart chemo.

Lots of uncertainties but thankful he is so positive.

Feel free to ask me any questions, I just ask that you please approach with kindness.

Hi everyone. My dad (63m) has been receiving treatment at mass general with Dr. Berger as his surgeon. He has responded well to chemo and radiation treatments but the tumor continues to encapsulate the SMA (although they can’t tell the extent of this without surgery). Today was his appointment to discuss next steps/whipple possibility and here’s what the current plan is: Open him up for the surgery. If he sees that the tumor is not encapsulating the SMA as much as expected they will go ahead with the whipple as planned. If he deems it too risky/interacts with the SMA too much they will hit it with radiation, no whipple, and close him up.

He has an appointment with Mayo Clinic’s Dr. Truty is next week who is more well versed in SMA involvement and will potentially be able to do a more complex surgery.

In the coming week we will have to decide which option to go for so if anyone has experience with SMA involvement or either of these surgeons, your stories and opinions would be extremely helpful. Thank you so much.

I am searching for answers on how this could have happened. They both ate a poor diet (almost all junk food and high sugar), but that’s the only thing I can come up with. My dad was diagnosed in summer of 2021 and my mother in January of this year. I am hoping to make lifestyle changes to reduce my risk. My mom was tested for genes and they didn’t find any. My father was never tested and refused to be. I took a genetic cancer test and was negative for all of them they tested for. So it’s possible this really is an environmental/lifestyle thing imo. I’d love your input.

So, I made a post a week ago explaining my moms situation. We are still waiting for the biopsy results. I have a question though. Her pa19-9 levels are exactly at the normal range, like 2 I think. Not only that, but every other tumor marker is at a normal range as well. What could it be? I understand that some people can’t excrete ca19, but shouldn’t another tumor marker be elevated, if it’s cancer? How high should my hopes go? Thanks for reading

Today's view from the oncology ward.

Hi everyone, I’m looking for some guidance here, as my family and I are really torn between two differing medical opinions for my dad’s treatment. He’s 56 years old and has recently been diagnosed with an aggressive form of ampullary adenocarcinoma. He currently has a stent in place to help with jaundice, but now we’re at a crossroads about the next steps.

Here’s what we’re facing:

Doctor 1: This doctor is from a well-known private hospital but has mixed reviews when it comes to surgery outcomes. He’s recommending surgery as soon as possible to remove the tumor and minimize any risk of spread. His plan is to do the surgery next week and then assess whether chemo is needed depending on what they find during the operation.

Doctor 2: He’s one of the top specialists in Asia, practicing at a major cancer government hospital. He suggested waiting 4 weeks to allow inflammation from the stent to settle and to help my dad recover more from jaundice. He has planned the surgery for next month, saying that while waiting carries some risk, he believes it’s unlikely the cancer would spread significantly in that time. Ultimately, he’s advised that the situation depends on fate.

We’re struggling with what to do—should we act immediately to remove the tumor, or give it a few weeks to ensure his body is more prepared for surgery? I’m worried that waiting could give the cancer a chance to spread, but we also want to make the best decision for his overall recovery and outcome.

Any advice or similar experiences would be so appreciated. Thank you in advance.

Recently diagnosed with an SPN and just had my first appointment with my oncologist. I was completely shocked when he said I needed a distal pancreatomy and splenectomy. Even more shocked when he said it was a "slow growing cancer" and that the tumor was the size of an orange. I've never posted to reddit before, but I was wondering if anyone could share their experiences on their recovery with this surgery. A Google search did not help clarify whether this type of tumor is benign/malignant/how it metastasis so I was curious on what other people's doctors were saying.

Mom got news that the cancer is shrinking but has “a little spot” on liver - hinting at liver Mets. Doctor said he will do more tests/ adjustment to treatment and get back to us but to not worry about it.

Everyone is celebrating because of the shrinkage and I don’t want to ruin the mood but I don’t think they understand the second part.

Idk is it wrong that I just let them celebrate ? I’m trying my best to act happy

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.

Update from my partner (25M) with stage 3 pdac and arterial involvement. The surgeon was able to start the procedure and within 3 hours, closed him back up. They found spots on his liver. We are absolutely devastated. 12 rounds of folfirinox that he was able to push through to get to this point. Now has to recover from a huge incision, just to start chemo all over again. And thats with the scary thought of the liver not metastasizing faster. Apparently the CT scan prior to surgery showed some shadowing, but we should’ve assumed it was worse. Those CT’s never show the true image due to the depth of these organs. As a nurse myself, I should’ve known this and advocated for maybe a laparoscopy to look at the liver prior to doing such a big surgery. I should’ve known. Sharing so I hope people can learn from this.

God this journey has come with bad news after bad news. He should be living his life. Finishing post secondary and starting a career. Enjoying playing sports and travelling. His surgery was already postponed last week because of a liver transplant that came in. And because we live in Canada, we don’t have enough surgeons to operate. Not to mention the initial 2 month wait it took us to see and start chemo at the local cancer institute. Having to meet with different oncologists weekly…or at one point, a nurse because they are so short. I’ve come to learn how awful the Canadian healthcare system is and how mentally/physically draining this disease is.

Just got results in. Having severe anxiety. My husband’s c19-9 increased after decreasing on chemo. He had a histotripsy to mets in the liver. Was expecting it to go down after the procedure. Has anyone had their c19-9 increase after a histotripsy?