My wife is in late stage 4 pancreatic cancer. Part of the late stages included strokes. Due to the strokes she has lost her ability to speak. She still has facial expressions (less every day) and moans / grunts. She is at home on Hospice and I have morphine to give her for pain. She has a very high tolerance for pain and has never complained much about pain.

In your opinion, due to it is the very end of her life, should I just keep her pumped up on morphine? Should I wait until she is visibly in pain to give it to her? Should I just give it on a set 2 hour schedule (.5ml/2 hrs)

I don't want her to be in pain. Anything else I feel or want is just selfish and about me.

Thanks.

Hi,

My dad is 67 years old with stage 3 pancreatic cancer... we started his chemo treatment at a cleveland clinic location in florida, his tumor has grown around the SMA, so we have to do chemo before it is operable. The chances of success here at cleveland clinic are pretty low with, but so far it's going as expected (he gets really sick with every chemo round, lost about about 50 pounds and has no appetite, is aging very quickly), he has done 3 cycles of chemo here so far. My brother wants to try Envita since he says they have a 75% success rate, does anyone know how true this is. I never really heard of them before...

Appreciate any help and recommendations. Thank you.

The first time I see him today, he is so, yellow.

The surgery to create flow from bile to intestine just done. He went through it so well. His vital is great. The doctor said, he saw it all, the tumor is there and it’s spreading to his liver, while also being rock hard.

We literally just found out the cancer has been in my dad’s sibling all along, last week. And suddenly now he is suspected in the late stage of pancreatic cancer.

I am so lost. Sorry for rambling. I was numb when the doctor said it all but now I am starting to get it.

I am with him in the hospital now, in the middle of the night, waiting for my siblings to arrive. I am so scared to go to sleep, I worried that he might just leave all of sudden. I want to cry but I don’t want him to hear me. I miss my baby, but I am so far away now to be with my dad. My chest was hurt a lot (from not breastfeeding for 2 days) but after releasing all the pressure I feel a little bit better.

I know I can’t get all my answers here, so…Please don’t yell at me for posting. Just looking for something to ease my mind a bit. I have been having pain in the upper right side of my Stomach, that radiates to my side and back for three weeks now. It’s just about constant. I went to have a CT scan done yesterday, and now they want me to get an MRI, because they said there’s something on my pancreas but they don’t know if it’s fatty pancreas, or a mass. Any insights? If it wasn’t cancer, would I still be in pain? Because everything I am reading points toward yes, it is. I’m 41. No history of pancreatic cancer on my mom’s side. Don’t know about my dad’s.

Long post ahead.. Husband (70, stage 4, liver mets, 9/16/24 diagnosed, 1 round folfirinox, 1 round gemzar/abraxane) just discharged after almost 4 days treatment for a pulmonary embolism. Prior to this, his sugars had been running very high, 200s into high 200s, and he was very fatigued. When he woke me up at 3am that day, he was feverish, couldn't get out of bed, and had to urinate. I think I posted about this earlier this week, but everything is running together.

Well, he was discharged today. During his stay, he had an ERCP with a stent placement as the tumor was encroaching on the common bile duct. When they opened up the duct, a ton of sludge and stones gushed out (per the Dr). My husband's oncologist agreed the ERCP would be helpful, but she is at another hospital, not where he was admitted.

Things I observed:

• my husband had a different hospitalist every day. I'm a nurse, and that kind of lack of continuity would make me crazy.
• he was hooked up to a remote telemetry pack, and I was able to see the tele strips when they were pulled for issues. (QRS was widening) I wasn't able to see all the medications he was being given. In retrospect, ondansetran iv can cause this, and so can blood chemistry abnormalities from dehydration, both of which he had. They gave him oral potassium and magnesium iv, but not much else was done, no 12 lead ekgs.
• he received a heparin drip, which, of course, was stopped for 24 hours for his ERCP. Then he went onto oral pills, Eliquis. And they only educated him (not us) about this drug. And he's still not 100% himself, forgetting a lot of little things. I'm used to Dr's including the spouse in education, especially when there's a change in mentation.
• this is a little nudgy, especially cause I was a nurse, but no one set him up for morning care. I work and would come visit with him afterward. I didn't realize that he wasn't receiving AM care/set up until I was getting his toiletries together to take him home, and there were items not opened. Since he isn't 100% himself, he didn't say anything to me. I felt terrible. And yes, he had a wonderful, long hot shower in his shower chair when he got home today.
• I asked for a physical therapy evaluation because he's at risk for a fall as he is wobbly at times. Never happened. He laid in bed and was never encouraged to walk around or move to a chair for a short bit. By the time I'd arrive, he was too fatigued to do anything. I'd learned that it is best to do things in the morning when he's rested.
• I'll say it again, but he was not encouraged to move around or walk, especially in the morning when he'd be more energized. Inactivity goes hand in hand with emboli. He was not educated on this aspect.

This hospital is considered a Magnet care hospital, which is a coveted and hard fought nursing designation. I've been to their ER, and they do a great job. But omg, I was appalled at the care on this unit. The nursing assessments I was present for at change of shift were non-existent. Shocked is an understatement. Patient and family education is really key and helps reduce readmissions and complications. Especially if a patient has a disease (or two) that can contribute to blood clots.

I'm concerned he's going to end up readmitted. I had to vent.

The bottom line is that he is now on more medications and hates it. He hasn't said it, but it feels like he's throwing in the towel. He said the disease, the medications, everything is too complicated, and he still feels like crap.

How do you help?

My Dad was diagnosed in March 2023 with Stage 4 pancreatic cancer spread to the liver. He was 54 then. The doctors said they caught it early and it was only considered stage 4 because it spread, but that the cancer was extremely tiny. That gave our family hope. He was on chemo until September of 2024. All of a sudden, it stopped working. For over a year, the chemo was shrinking his cancer and stopping it from growing. Then out of nowhere, it spreads like crazy with way more cancer than before on his pancreas and liver. He stopped chemo about a month ago. The Dr hasn’t given a prognosis, but I can tell he has less than a year and it is killing me. He is only 55 years old. Even caught early, this disease is still most likely going to take his life. The pain is so bad causing him to be severely depressed. He barely goes outside, barely talks, etc. He was the funniest, kindest, most thoughtful person around and now it’s like he is someone else. This disease will sneak up out of nowhere. It is truly truly truly awful. I have never been through anything worse in my life, so I really cannot imagine how he or my Mom feels. Just trying to soak up every minute as a family and enjoy it all while we can.

My grandfather (78) is my favourite person and like a dad to me. He was diagnosed 2 weeks ago with stage 4, spread to liver, lymph nodes, esophagus, chest and possibly lungs. His pain, decreased appetite and weight loss (25 lbs) only seemed to come on a month before his diagnosis. His prognosis is 6-9 months without treatment or 9-12 with. I suspect he will opt out of treatment but am still waiting for him to decide.

Over the last two weeks he has been struggling to eat, has trouble keeping food down and is getting more tired and weak by the day. I’m really struggling because it seems like one day he’s having a good day and has some energy to go outside, making the 6 months seem likely. But then the following day will be a bad one where he’s struggling to keep his eyes open while having a conversation and doesn’t have the energy to leave the house, making me think the 6 months is a pipe dream.

Does anyone have recommendations of foods that are somewhat tolerable when eating is difficult and you have no appetite? He seems to find applesauce and pudding ok, but is getting tired of them. Am I crazy for thinking that 6 months seems unrealistic at this point?

I’ve gone over to see him every day since the diagnosis and am starting to feel like this disease is gaslighting me beyond belief. Appreciate any insight and can’t thank everyone enough for sharing their stories and motivating me to reach out. I’m feeling so sad and lost.

My 90 year old grandmother who has suffered with recurrent UTIs for years had at CT scan yesterday The urologist was trying to determine why she keeps getting UTIs since it’s been constant for the past year.

The urologist found a 1.5 inch “size of half dollar” mass on the tail of her pancreas. He said he was sure it’s cancerous and referred her back to her PCP. PCP appt was this morning. He said yes he agrees that it’s cancer but being her age and declining health, it’s better to just “leave it be”. Which is fine and also what she wants. He offered an MRI but said it really wouldn’t change the outcome.

She is obviously not pursuing any treatment at all. I guess I’m just here for some emotional support with similar caregivers and maybe advice on what to expect. I lost my mother when she was 50 to lung cancer so I know the toll this can take on everyone.

I just wish I knew how bad this is and what time we have left. From Dr Google to looking through posts here, I’m assuming anywhere from a few months to maybe a year?

Anyway - thanks for reading if you got this far. Cancer sucks 😭

Today we found out that my mom has pancreatic cancer. Not sure what stage yet but the way the oncologist talked, it's more than likely terminal. I'm not sure how much longer I can put on the pillar of strength/brave face act. I'm terrified of losing my mom. She's my best friend and I've never had to envision my life without her.

Hi friends, I wanted to make a post updating on my moms condition. This is my third post on this sub. Mom (77) was diagnosed back in mid September with stage iv, Mets to liver and lungs. She pretty immediately chose to forego chemo and is on hospice (We are in Vermont and use Bayada). Our big bump in the road thus far was a GI bleed that weakened her and made her pretty anemic (blood transfusion wasn’t offered as she didn’t quite dip below the threshold). However, her condition has in some ways improved after that. At that time she couldn’t eat solid food, but since she’s gotten on Creon, she’s able to eat little meals and does have a slight appetite! She’s been eating liver, shrimp, scrambled eggs and turkey sausage and enjoying it. I love cooking for her and seeing the joy she can still get through food! She is very alert and generally in good spirits. She’s enjoying having friends and family over to visit.

However in other ways she’s declined. She’s on oxygen 24/7, per her comfort, and even though her muscles still seem ok, walking more than a few paces without a walker is extremely exhausting, and leaves her panting. So she’s staying in bed. Initially her CT showed a pulmonary embolism with lung involvement so I’m wondering if her severe shortness of breath is related to these things? Since she is sleeping relatively well, isn’t in too much pain, is quite alert, and still eating and very well hydrated, I’m a little stumped about the apparent hypoxia (her 02 does seem to dip down to the 80s during times of effort, like showering). Any insight?

We are now changing our strategy slightly to help bathe her because scrubbing herself seems a bit too strenuous/athletic. I’m trying to strike a balance between having her feel like she has some control yet protecting her enough so she doesn’t do anything to further cause herself pain.

We have made some lovely memories these last weeks. For some reason we’re on a Monk watching ritual, and each night we watch an episode with my brother. Thank god for comedy!

Thinking of you all…. By the way, it’s because of this forum we learned of Creon. My mom keeps praising it as a miracle drug. It’s transformed her quality of life for the better. Thank you

Is the chances of hair loss on women greater on gem/abrax? She did not have hair loss on her previous two chemotherapies (I believe one was FOLFINOX (bad with these medicine names) and one other)

I'm not sure if anyone else has this. Doctors don't know why I have this pain (it's what led me to the ER and I got my diagnose).

I had a scan and my pancreas is clean, but the pain persists. Anyone experienced anything like this?

Hey guys, my father (64) was recently diagnosed with stage 4 pancreatic cancer with Mets to the liver. Doc said surgery wasn’t an option at this point so he will start aggressive chemo here in a few weeks. I asked my dad what kind of life expectancy the doctor gave him but he wouldn’t say… just looking for some advice on how to help him with chemo and what kind of expectations I should have for how long he has left. I know it’s a case by case situation, and I have done a fair amount of research on stage 4 with Mets to the liver, albeit grim results. So I decided to come here to talk to people with experience dealing with this disease. Thanks

Just got my placard today (California) Found out I can park at any meter as long as I want with no fee. All it takes is a couple of forms and your oncologists signature and info. Minor morale boost. Mainly for when chemo causes vertigo and tendency to fall over with sudden movements.

Mom is currently on her 13th cycle of folfirnox. This cycle she has been having a lot of mucus build up that has been leading to vomiting here in there which has not happen before. She is not sick and has normal temperature, no signs of infection. Is there a remedy for the mucus buildup?

Advice, Pls My mother has stage four pancreas cancer and is near the final stages since the chemotherapy stopped working. Her voice became very hoarse due to treatment and her lack of water isn't helping. We don't want to force the water since they said it would do more damage.

Would like to record her but her voice isn't the same. I feel torn to record it because when I replay it it might just give me the memories of when she was sick. Would like record some stories and I got push buttons for dolls. Wanted her to say "I love you" or happy birthday so I can keep those memories. I feel those messages will be tainted if I record them now

Anyone have this same situation? Thoughts?🙏💜🙏

Hi all,

After recently losing my mother, I have quite a bit of medication leftover from her illness. One of them being Creon, which I know is crazy expensive (we were lucky to have been covered by insurance).

I've tried researching medication donation, and all of them seem to accept them only when there's a tamper evident seal. Unfortunately all the medications have been prescribed in the amber vials that disqualify from donation.

For those who have been in a similar situation, what do you do? This disease is awful enough, and it breaks my heart when I think of those limited from recovery due to expensive and/or inaccessible medications.

Hi all, as the title says - have any of you had a private endoscopic ultrasound in the UK? If so how much did it cost? Also, where and when did you have it?

I have posted a couple of times in the past 12 days (dad was diagnosed 12 days ago with stage four metastatic that has spread to lungs, liver, and bone). He did not have pain up until about a month ago, maybe 6 weeks ago max (the pain radiating between back and stomach). It is insane as he had shoulder replacement surgery 6 weeks ago, and went through the recovery for that with stage four.

Anyhow, my question is this- what is the pain like with stage four metastatic? My dad is on consistent oxy and morphine all day long. I tried to ask him to explain the pain to me and he said that the pain from the biopsy (liver) was localized to that spot, and was very painful, but when asked about the other pain sadi that he didn't really know how to explain it. He said the other day his pain was about an 8 without the meds, and currently is about a 3 with the meds. I am trying to understand what this pain is like or have some sort of idea- is there anyone who has experienced this who can explain to me somewhat how the pain is? or if there is a comparison? Just trying to understand somewhat. TY!!

My wife's pancreatic cancer was deemed inoperable by her oncologist. It is attached to major blood arteries and nerves. A second opinion at the city of Hope in Los Angeles stated that it may be operated on. Does it ever shrink or detach enough that we can remove it? Thanks in advance

My mom was diagnosed in December 2022. She is not able to do whipple and has Mets in the lungs. She’s at a top hospital and has been on a few different treatments (chemotherapies, radiation, two different clinical trials, and now is going on gem/abrax).

I am hitting a wall where I am just losing all hope. I’m depressed, I’m anxious, I’m ANGRY. I’m angry at everyone - her doctors, myself, even her (of course I know it isn’t her fault).

I don’t know what the point of feeling hopeful is. Does it really have an impact on any of this?

Ive been stuck in such an existential crisis for days about this all. I read things online that scare the shit out of me. I read things online that make me hopeful. I don’t know who to believe or what is true.

If anyone has any grounding ideas or pieces of advice, I would greatly appreciate. I just need some helpful words.

Thank you all for this community ❤️

Hi!

We don't have an official diagnosis yet, and my parents are not very communicative but after quite a bit of back pain, my mom went in for an MRI that showed lesions on her spine. She went back for a CT scan, and that showed additional lesions on her pancreas, liver and in her lymph nodes. There was some talk of getting a brain scan, but she wanted to get info about the diagnosis for everything else before proceeding with the brain scan. She was admitted to the hospital yesterday because of a blood clot in her lungs.

At this point I'm assuming pancreatic cancer that has metastisized, although, again, no official diagnosis, prognosis or treatment plan. I looked around here last night (the day I found out) enough to suspect we're in stage 4 territory.

My mom has been the primary caregiver for my dad, who is showing signs of memory loss and cognitive decline that's accelerating. She's always been in charge of everything (food, cleaning, taxes, etc). My dad has had cancer for years but it's been in remission. She handled everything for him around that, too.

To add some additional difficulties, we are across the country. My job and my husband's job are flexible but my kids are in school here. He works remotely, I've got a hybrid schedule and understanding bosses so I could probably go remote for a time. They maybe have one friend in town (my mom's incredibly socially anxious), and I don't have that friend's number and am not sure they want to let her know yet.

What things should I be asking? What should I be planning for short term and long term?

Thank you so much. I'm kind of overwhelmed and also very frustrated with the lack of communication (everything I know has come through my aunt or the charge nurse - my dad's forgetting to turn his phone on, not responding to messages at the home phone, and my mom is also not responding to her cell via calls or text, but told my aunt to share what she could with me. My mom is also incredibly private, and weird about... A lot of things). I really appreciate any steering in a good direction.

How bad was the liver biopsy pain?

Doctors are struggling to figure out if it's pancreatic cancer or IGg4 disease. It's not PSC. My husband is 35. His grandmother passed fairly young from pancan. He Woke up jaundice in September. Found biliary stricture in lower portion of common bile duct with a bulky heterogeneous pancreatic head. Stent was placed and a brushing of the stricture was done. He lost 12 pounds in those first 2 weeks despite eating. He has continued to lose weight. He was 212 and now 183. He has a normal appetite. Ultrasound, cat, MRI and MRCP could not rule out mass. His pancreas is so inflamed they can hardly see it on imaging. They ran his igg4 and it came back high but not quite high enough to diagnose igg4 disease. Doctor says his numbers match more with pancreatic cancer but CA19-9 was only 25. They have started him on a high dose prednisone to get the inflammation down so they can see if there is a mass or lesion in the pancreas. He has another MRCP scheduled next week followed by ERCP to replace stent with Metal one and take biopsies. Stricture specialist will be joining his GI doc and performing a EUS (finally) at the same time. He was born with low IGe which we know can cause kind turbo cancers as well as autoimmune diseases. Doctor is also talking about starting chemo regardless of confirmed mass. My last post got deleted but I didn't give much info so hoping the detail will help. I'm not finding a whole lot of info on cancer and igg4 levels online. Did anyone else have igg4 elevated with their Pancreatic cancer diagnosis? And would you mind sharing what they were? Doctor says he's a confusing case. We had 4 doctors at his last appointment... feels like we're stuck in a bad episode of house.

Hello all, I’ve been following this community since this past summer due to a love one’s diagnosis. I’ve seen similar post on the topic of normal CA-19-9 in PDAC. Stage 4 with liver mets, CA 19-9 in this case at diagnosis was 25. Just had some questions of whether this is true PDAC.

ESTROGEN RECEPTOR: NEGATIVE TTF-1: FOCALLY EXPRESSED CA125: POSITIVE CDX2: EXPRESSED GATA3 POSITIVE CYTOKERATIN 7: POSITIVE GCDFP-15: NEGATIVE

I am so extremely nervous. I have my first chemo tomorrow morning. August 14 pancreatic cancer with liver mats and a few areas of questionable involvement.

I'm 55 so Dr insists I start high and we can adjust. I get it they think I'm younger than average and healthy. That might be true if I didn't have this diagnosis mentally I am weaker and I've lost 15 to 20 pounds so I don't feel physically strong. I'm a super positive person and I'm willing to fight and push through this. I just went back-and-forth so many times if chemo was right for me I just really want to appreciate what quality of life left. Worst part for me has been the burden on my 4 children ages 32-30-29-27.

Chemo tips? Thanks in advance

Hey all:

I was diagnosed with a well defined Stage IB adenocarcinoma, which was confined to the head of my pancreas on 14 May 2015. I qualified for surgery without needing chemo or radiation due to lack of involvement.

I turned down the offer of a 2nd opinion as my uncle Michael had lived only 19 days after being diagnosed at late Stage IV.

2 June, underwent an 8 1/2 hour pylorus preserving Whipple.

Pathology report showed the tumor had advanced to IIB in that short time. Surgical margins were clear, but 4 nodes and 1 nerve were suspect, but not confirmed as involved.

I did agree to chemo as a safeguard. I had 16 treatments from mid-July to mid-December, Zophran for nausea and Gemzar for toxin.

Still here and still clear.

Our Mom passed last week and over the course of her 18 months fighting this disease tried several different treatments. For what it is worth I thought summarizing her experiences on each one may help another patient. She was insanely strong and I credit the doctors at Northwestern University for giving us as much time as we had. If you are in Chicago and especially the Chicago suburbs I would highly recommend getting a consult from the Northwestern Lake Forest team and from the U Chicago teams.

June of 2023 - Gem/Abrax with 9-ING (trial drug). Adverse reaction to the trial drug which depleted her WBC and caused a bad stomach infection but it cut her CA19 in half, no sign of growth in the tumors on CT. The infection did nearly kill her. She also developed a lung embolism which resulted in another brief hospitalization.

August of 2023 - FOLFOX (could not do the full FOLFIRINOX because of the damage to her digestive track). 12 rounds, amazing results, primary tumor not visible on scans and 60% reduction in liver mets. By the later rounds extreme fatigue and neuropathy, last two rounds really were hard and required an extra break between rounds 10 and 11. Rounds 1-7 she was able to live a very good quality of life. Her hair even grew back!

February of 2024 - Lynparza. She had nausea for the first 4 weeks then no side effects. This drug worked for only 4 months (or perhaps not at all?) but it gave us our Mom back for a little while. She was able to play with her grandkids and live pretty normally. It was only the side effects of the previous treatment wearing off that slowed her down. Mixed blood results during this treatment (CEA went down when CA19 went up) and it was only confirmed to not be working with a scan. She had a BRCA 2 mutation.

May/June of 2024 - FOLFIRI with the modified IRI. No effect on the cancer, caused mouth sores, led to additional digestive complications and two hospitalizations. Lost her hair (man was she upset about that!)

June - August of 2024 - Trial drug PYX-201, an ADC. First scans showed it shrank some of the smaller tumors but not the larger ones which grew. Kept the cancer somewhat controlled for 4 rounds (12 weeks). Extreme fatigue and a rash were the main side effects. Not sure if the drug or her cancer caused the additional hospitalizations while on it.

If you or a family member are exploring any of these trial drugs or have questions I am happy to try and answer them. She helped everyone she could and I am going to try and do the same. Our Mom's experiences are not going to be the same as your own, however, I struggled to find anyone who took 9-ING or PYX201 so wanted to share more details there if I could. The same for the Midwest hospital recommendations. In addition to where she was treated we explored options at Rush which had she been a candidate for surgery was where we would have gone.

In addition to these treatments we explored IRE, Histotripsy, Radiation, etc... and while Mom wasn't a candidate we educated ourselves and I am happy to share more of what we learned if it will help anyone. Just DM me or ask on here and I will try and reply.

The most important takeaways I can give anyone; make sure you have some kind of mental support for yourself if you are taking care of someone. Get your hospital's palliative care team involved from the beginning. We did not know what were normal chemo symptoms and what required hospitalization, it nearly killed her during the first treatment. Google is no replacement for a care team. Get a BP cuff, apple watch, pulse oximeter, or other at home measuring tools to identify symptoms. It's how we caught issues 3 times or more that would have resulted in death had we not. Natural remedies have not been proven and some can cause complications with traditional meds. Be sure and clear all supplements with your doctor.

I am not sure what more I can share that would help this community. We had no family history of cancer, she was extremely healthy prior to being diagnosed, none of this makes much sense to us still.

I hope this information helps another patient. Thank you to everyone here who helped me help her these past 18 months.

Hi I’m a 36 year old female. I’ve been having left side pain in my ribs and back as well as a change in stools for the last 2 months. I had an abdominal ct which showed nothing. I pushed for an MRI which was done 2 weeks ago. It came back that I have a few branch duct IPMNs no larger than 4mm. I am currently waiting to hear back from the specialist. Would this be the cause of my pain? Could a true tumor have been missed on these scans?

My brother was diagnosed with PC late May 2024 did 8 cycles Folfirinox at 2nd scan said there was progression. switched to Gemcitabine/Abraxane. Ca-19 down to a 5 but CEA is rising at a 17 yesterday that's why treatment switched. Has this happened to anyone? tumor still localized within pancreas with artery and vessel involvement.