69M Stage IC PC liver Mets "Normal CA19-9 no pain

I (41M) caregiver helping life long friend (69M) navigating stage 4 PC adenocarcinoma. 12-16 month prognosis. Otherwise, "in good health."

Feb 2023-Found accidentally when got scan for chronic cough. Suspected lunch cancer. NO Lung Mets but scan lesions on liver.

Primary Doc missed the lesions on the liver, possibly because CA19-9 was/is normal. No real secondary symptoms NO pain(to this day), no drastic weight loss.

Symptoms: Mild weight lost, fatigue, oatmeal like stools.

Sept 2023- Pet/CT and ERCP/Biopsy confirmed PC 2-3cm adenocarcinoma in the tail with 2x4cm and several smaller Mets in the liver.

27 Sept 23 1st infusion FOLFIRINOX

-EGFR and HER2 are markers(doc says there is medication to target the above markers, but will wait to see the effectiveness of FOLFIRINOX.

22Nov 23 4th infusion FOLFIRINOX

28 Nov hospital sever dehydrated after a all day solo hunting trip.

"Typical" chemo reponce fatigue shortness of breath, lack of appetite. Getting a better week after infusion. 1st week looks like clost to death. The 2nd week acts almost "Normal."

3 Dec(tomorrow) 1st follow-up CT Scan.

1. Is no pain and normal CA19-9 values normal?
2. Why not give targeted medicine now or in conjunction with chem?
3. What is next? What to expect? Is 12-16months realistic?
4. 69M is a dreamer. Always planning for the future at times seems like he doesn't understand or acknowledge the situation. Encourage the dreaming?

Auntie has pancreatic cancer. Unaware of stage as she didn’t want to know. Inoperable due to portal vein and SMA involvement. Having chemo folfirinox had one session and had a reaction this was almost 3 weeks ago. (Due again 17th) See pic attached of report from endoscopy for stent. They want to try again, but I don’t understand what it means and she didn’t get any answers in her latest oncology appointment so if anyone can explain what it means in easier terms I’d appreciate it. If stent fails again will have bile drain. Thank you

IF spots were found on the lung via cat scan and have since shown growth, should they be biopsied before they clam metastasis or is it 99 times out of 100 safe to say it is because of how aggressive this cancer is.

My dads PET scan showed a tumor at the head of the pancreas (6 cm long and 5cm wide-it’s very large) they did not see any other organs affected on the scan. We had an appointment with an oncologist today and they said he can’t start any treatment until the biopsy confirms that it’s a malignant tumour. But they said the biopsy takes two weeks for the results and I think that’s to long to wait in this situation. He said most likely it’s malignant and said after confirming he plans on doing 6 months of chemo for the tumour to shrink and than surgery. What are your opinions on this, can I do something for the biopsy results to come faster? Should I go get a second opinion at another clinic?

Mum (74yo), diagnosed in mid October, stage 2b or ‘locally advanced’, half whipple (tumour inoperable) commenced chemo a week ago, on folfirinox. Out of the last 8 days she has been extremely unwell on at least 6 of them - nausea, diarrhea, pain (obviously), dizziness, hair loss and extreme tiredness amongst other weird neurological symptoms. Is it normal for everything to present so extreme so quickly? What is everyone else’s experience of the first cycle? We are worried that if she doesn’t tolerate this well, she’ll be loathe to go back for more. Does it sound like a dosage issue? She is absolutely determined to fight this but seems to be struggling at the first hurdle.

So since I started chemo back in early August, I have had major issues with insomnia routinely waking up at 11pm-3am and not being able to go back to sleep until 6am. Initially, I took Olanzapine/Zuprexa 5mg po prescribed by my oncologist. It works, but it makes me feel in the morning and most of the day like I’ve been without coffee for 10 years. I tried medical THC/CBD and that worked too but left me feeling same as Zyprexa.

Does anyone have a solutions for sleep that does’t make you feel like a zombie The next day? It’s not anxiety or racing thoughts or anything like that, it’s just finding myself awake not being able to go back to sleep.

Little background info i suppose: About a week ago (Friday, Nov 22nd) I took my father in law to the ER for noticable jaundice and suspected liver issues. By Saturday a 6cm pancreatic tumor (on the head) was confirmed by MRI and he had his Biopsy the following Monday. Head MRI and chest CT were clear though. There were issues reaching the tumor (they took some off the small intestine instead), by Wednesday it was confirmed pancreatic cancer but they wanted to do another Biopsy before giving us a referral to their recommended Cancer center and l guess that place wouldn't have been able to get him with an actual doctor for about a month anyway. SIL didn't like how long this was all taking so she got him to a different cancer center and the appointment is this Thursday, Dec 5th. I have been both MILs and FILs primary caretaker the past few months through some surgery recovery and just general houshold aide. Though both are still rather able and functional, their age is showing and it's helpful to have me around. I had most all the answers for the initial appointments but SIL took the lead (which i was totally okay with, its her parents afterall, I just helped make sure they had all the info what the past litte while has looked like for the parents.) SIL isn't able to be here for the first appointment with oncology so I feel like other than Ma and Pa, I'll be the one asking questions and taking notes. I have some questions of what to potentially expect? I've never been in this situation and I'm a little overwhelmed and nervous.

• Do they usually know the stage by now? Or do we need a PET scan first?

• Would they be prepared with an estimated treatment plan?

• Other than a PET scan, is there any other testing we should ask for or they may ask for?

• I've read so much about how agressive this kind of cancer is/how high the mortality rate is, is it typical to wait days to weeks between each step?

• Those who have been caretakers during the initial stages, are there things you wished you asked about or are glad you did ask or glad you were told?

Any help, info, and/or advice is very much appreciated. Though I'm grateful for input, I'm deeply sorry anyone has had to experience any of this to any extent.

EDIT TO ADD: they placed a stent at the same time as the Biopsy and his jaundice has SIGNIFICANTLY subsided. By Thanksgiving he had a practically normal complexion.

2nd ETA because it seems important to know: He's 68, has had multiple back surgeries that resulted in fusion (fusion may have been MIL but FIL has for sure had back surgeries), shoulder surgery, and had localized thyroid cancer, thyroidectomy, then followed with radiation for good measure. That one was nearly a decade ago now. They are not the most active nor healthy people, but not insanely unhealthy either. He has been generally able, just takes a little longer and hurts a little more. He's on more meds than I can count and I am not well versed in his entire medical history, but that's what I know.

Good evening! My 70 year old father, who is diabetic, recently received treatment for bladder cancer. An MRI identified a “1.4 cm nonenhancing pancreatic cyst favoring a side branch IMPN.” He had an ultrasound guided biopsy of the cyst in early October, and just found the results on his Labcorp portal (dated 10/18) with a CEA of 1,785 ng/mL “suggestive but not diagnostic of a mucinous cyst.”

I understand that CEA can be raised due to multiple factors (including diabetes), but this seems beyond that? He’s calling his doctor tomorrow (unclear why she hasn’t called already as the results were posted six weeks ago), but I’m looking for a sanity check. Very much appreciate any insight!

Mum had a temporary drain put in last week as ascites causing laboured breathing (5L came off in first couple of hours or so). It then got ‘blocked’ and no one seems to know his to unblock it!! It’s being kept in until she can get an indwelling/ permanent one out in after the weekend. But meanwhile the ascites is filling up her belly again & making breathing shallow again (not as bad as it was before last week’s temporary drain was put in; but still uncomfortable).

Nurse attempted a flush, but didn’t push the syringe very forcefully & blockage didn’t resolve/ no debris was dislodged. And afterwards mum felt some wetness on her belly, so the flush caused a leak outwards!!

1. Is this same problem going to exist when we swap out the temporary one for a permanent one?

2. How do you all unblock a drain? She tried sitting up & then moving, but it didn’t make any difference.

3. Frustrated that the nurses can’t unblock it (& that they only tried once - today - after it blocked up 2 days ago) Meanwhile mum’s belly continues to swell and she’s trying to cope with the discomfort without any resolution in sight (except for the planned indwelling drain tomorrow). Any tips or tricks. There’s no brand name on the drain so I can’t even look up a PDF instruction leaflet on line. CAN A FLUSH BE DONE MORE FORCEFULLY to try and dislodge the blockage … I can’t describe how slowly she did it, but let’s say over 3-5 seconds instead of a QUICK SQUIRT!

P.s. It’s the bit of the drain that goes from mum’s tummy into the bag.

My grandma has no metastisis, and her lymph nodes are stable. However, her main tumor grew 1 cm on her recent CT. This is her second chemo (folfirnox was not good for her) and she’s been on it for around 6 months or so. Will they keep trying or call it quits?

My Dad was diagnosed in May 23, had whipple in June 23 and 12 rounds of chemo.

He’s waited almost 2 years for a hernia operation, which was done last month.

Thanks to a hospital mix up, we have no long terms records of his ca19-9.

I know it was 91 after his whipple.

A month ago, it was 91. A month later it’s 286

His next CT scan has been brought forward to this month.

Is this almost definitely a recurrence? Is there any chance the hernia operation has played a part in this?

Any advice or expertise would be greatly appreciated.

My husband is stage 3 and had surgery to remove pancreas, spleen, gallbladder, part of stomach. They found cancer in some of the lymph nodes. Not sure how many.

How will this impact him and does this mean he has less time?

Any information and experience greatly appreciated.

Thank you in advance!

Edit: surgeon said they expected mets to lymph nodes but they never mentioned that to us. Does that mean it’s not a serious development?

TW

It has been nearly two months, and this is the third time I've tried to type this out. I came here so much for support during her fight, that it has been hard now that she is gone.

My last post was when we found out the mass was back. We had 10 more days with her after that. Only 5 of those was she "herself." Her last 4 days of life were her gasping for air through the fluid buildup. She only spoke maybe twice in those 4 days, unconscious for 95% of it.

Her last words to me were, "please help me, it hurts"

The "rattle" and gurgling were for days on end, and I hear it all the time. In my silent home, on my sad car rides, in my nightmares. I heard her drowning for days, and I won't lie, the last 24 hours or so, something broke in me. I started yelling at the nurses and doctors, I started cussing out my relatives, I started telling her over and over to stop fighting it, it was okay to go, stop doing this to yourself. I was not myself, and desperate for her suffering to end. I truly hit the point that I did not think I could hear her "gurgle" one more time. Day 3 of no sleep and just staring at her dying, and I lost it. I grabbed my partner and started yelling "I can't hear it one more fucking time someone fucking do something, fucking help her make it stop" It is odd to remember these moments, because I wish she were here so badly now, but it was so bad. I could not watch her in pain for another moment.

2 minutes into my outburst, one of her amazing and kind nurses grabbed my hands and walked me back to her bedside and said "Her breathing is stopping, she is leaving us right now. She heard you, you can't do it anymore, and she knows that she can stop fighting. Tell her you love her, she is about to finally rest, she knows you are at your breaking point now, and that's okay." She was pronounced dead 3 minutes later. Time of death, 6:43 PM.

Everything about this was so hard. Every moment since diagnosis. I disagreed with her treatment plan, her surgical plan, my siblings pushed her into a surgery that I did not want her to have, and that ruined her quality of life, only then to not care for her properly after. I am alienated from my family now, as I resent them too much to look at them. My family is very toxic and always has been, and they were so inconsiderate and draining to her for her entire life, including after diagnosis. (Asking for money constantly even when she was at her sickest, stealing her pain meds, bringing drama to her bedside while she needed peace and rest.)

I am so tired. I am empty of everything but rage. Rage at the dumbass surgeon who took all the quality she had left. Rage at the relatives who took advantage of my mother's kindness. Rage at the ignorance of my siblings who would not listen to anything I researched. Rage at my OLDER siblings for putting so much on me because they "couldn't handle it." Rage at my mother for not taking her health more seriously before diagnosis. Rage at cancer. Rage at myself. It's eating me alive.

I am not well mentally. I thought that with all my research, all my talks with my mom, all the preparation and warning, knowing it was coming...I thought it would be easier. It's not.

And her end was so traumatizing. I still throw up sometimes when I remember the smell or sounds.

I feel so changed, I worry I will never be the same.

I hope I can come back soon with more stable or comforting words. But for now, just an update on how terrible and violent grief can be to the mind.

As always, thank you for the constant support. This group has helped me feel less alone so many times, I could never thank you enough.

Side note- I have reached out to a therapist and begin soon, I am aware that there are a lot of red flags with how I am processing my grief and that I need help. Things are bad, I know that.

The last few months have been a crazy mess for sure, since my grandmother got diagnosed with Stage 4 pancreatic cancer 2-3 weeks ago. The problem is, we could’ve given her so much longer to live and thrive, but the doctor ignored and overlooked her symptoms.

5 years ago, my grandmother went into the doctor and he noticed a mass on her pancreas, they did a biopsy and said it was benign and there was nothing to worry about. Then, fast forward to January this year, she’s starting to get sick, unexplainably. She can’t eat as much, she’s more tired. She goes back to the gastro doctor (who is the same doctor who found the mass to begin with) and sought advice. He told her in January that this mass was a “cyst” and it was nothing to worry about due to the size of the “cyst”. She progressively got worse and he kept brushing it off and she took what he said as trusted word and let it go. Months later she goes back again, as she got a lot worse and he continued to preach this was only a cyst, nothing to worry about and something else has to be wrong. Eventually, she fell extremely sick and was hospitalized, and that’s when she got proper testing done. There the journey began of the possibility of cancer.

It took about 1-2 months but with a proper biopsy, blood work and PET scan, we were told it was stage 4, spread to the lungs.

I can’t help but feel extreme anger at this doctor, as if he would’ve been precautionary, we could’ve known sooner, we could’ve started chemo sooner and maybe she would’ve had more of a fighting chance

My dad was unfortunately diagnosed yesterday. During an endoscopy like exam (I forgot the actual name of the exam) they found a tumor in the head of the pancreas going to the duodenum. The tumor is very large, they said around 6.2 cm long and 5 cm wide. They took a biopsy and we already have an appointment for Monday. My dad did a pet scan today to see if the tumor has spread and we still don’t know the results. My dad is 50, do you think he would be a candidate for the whipple surgery? Would he have to do chemo before to shrink the size of the tumor to be able to be a candidate?

Hello everyone, my dad just got diagnosed. We are from Portugal and looking for good clinics and treatments. Any suggestions?

Hello, have anyone had a treatment at Williams cancer institute and had positive outcome?

Hello everyone, my dad got diagnosed yesterday, we still don’t know what stage it is, we will probably know during the weekend or on Monday. I just wanted to know for the people that unfortunately have this horrible disease, what stage are you and what treatments have you done and the ones that were affective

Hi I don't post or read much because I am trying to figure out how to deal with this still. I'm trying so hard to be the optimistic one, but it gets harder each week.

I've had a thought, or group of thoughts on my mind constantly this past 2 weeks. Maybe you guys aren't thinking like this yet but my mom is having a hard time with chemo. She's not losing weight or anything, though she says most food has no taste or a weird taste but she's supposed to have chemo each week but every other week its getting canceled because her blood count is too low and ends up needing a transfusion every other week. She's losing blood. She a fighter and will do everything she can. But they basically gave us 2 options for the bleeding, we're waiting for pet scan results, the Dr's say it's most likely the tumor has grown thru her duodenum and if that's the case there's nothing that can really be done to help her fight other than continuing transfusions as needed until that's not working anymore.

They said there is a chance is something else that's minor and if that's it she still has the fight left.

But the Dr's are really pushing that is,most likely, the former. While I'm very optimistic, I've been thinking to myself, constantly, I have ocd, "these are most likely her last holidays". And that is what's killing me. It's her fav time of the year. She loves everything about it.

Its just killing me thinking these are most likely her last holidays. Any advice? Thoughts?

Probably nothing you can say but make them as best as we can for her and cherish them, etc. But that's not helping me when we're Xmas shopping or talking about it and I can't get the thought out of my head of "omg what is she going thru in her head that she's not sharing? "

Long term her fear isn't of dying but of leaving us all behind, but right now I'm sure it's just everything she's doing, decorating the tree, buying gifts, she just be thinking "I'll never do this again"

'This is the last gift I'll get for my granddaughter, this is the last gift I'll get for daughter, this is my last Xmas church service, etc., does this Make sense?

Are others going thru this right now? While I could never think about this in the past, why couldn't she be taken from us in a quick accident. Just to forgo all the tortuous thinking that most be going on in her head. It did give get time to straighten up a few will issues that needed adjusting, but that's not worth her going thru this anguish every minute.

Hi, I’m 21 and my sister is 15. Our dad is 49, turning 50 on December 10. He was hospitalized a week ago and after doing an exam today (I forgot the name but it’s like an endoscopy in a way) the doctor told us they found a tumor in the pancreas (she said it’s really large and it has been there for a long time). My family is heart broken and I don’t know how to deal with this (it was so out of no where, my dad never smoked, drinked and he is a super active and healthy person) tomorrow he’s going to do a pet scan to see if it has spread and on Monday we will know what the next step will be. I’m really scared about the future and I don’t wanna loose my dad, he still has so much to live

Hello

My name is Allen Morgan. I started what I call the Lori Project in loving memory of my late wife who died from pancreatic cancer on September 3^(rd), 2024.

What is the Lori Project?

Please help Advocate for Regular Abdominal Ultrasounds at High-Risk Ages (40+) to improve early detection of cancer by signing an online petition in support of improving early detection.

Goal: 2,000 signatures so we can start the lobbying process. I will lobby those who help set health policy to recommend "Regular Abdominal Ultrasounds at High-Risk Ages "

Link to Petition:

https://www.change.org/.../the-lori-project-please-help.../

Or use your phone to scan QR Code below.

This is a grassroots endeavor to answer the following question:

Why can’t doctors recommend periodic abdominal ultrasounds starting at the high-risk ages (40+) to identify abdominal abnormalities like cancer?

For my wife Lori, it started as mere back pain. But soon, a 15-minute abdominal ultrasound changed her life and that of her loved ones forever - she was diagnosed with stage IV pancreatic cancer. Lori was one of the 200,000 victims of abdominal organ cancer annually, and despite the resilience of her spirit, she succumbed to this disease on September 3rd, 2024, a mere four months post-diagnosis.

During a routine ultrasound, even before a formal diagnosis, the technician commented “I will be praying for you,” having identified an abnormality. This underlines the potential effectiveness of ultrasounds in identifying abdominal abnormalities in organs such as the liver, gallbladder, spleen, pancreas, and kidneys earlier.

I lost my beautiful wife of 43 years to abdominal organ (pancreatic) cancer after just four months.

I felt helpless that I couldn't help Lori.

But I am committed to trying to help others have a better chance of survival by advocating for this simple approach to early detection.

This is why I am advocating for periodic abdominal ultrasounds starting at the high-risk ages (40+).

These noninvasive tests could increase early detection rates, drastically improving survival rates, and ultimately saving lives.

Today there are no reasonable early detection capabilities for cancer of the following abdominal organs:

• liver

• gallbladder

• spleen

• pancreas

• kidneys

But most of these abdominal cancers are insidious and don’t manifest symptoms until they have spread. Once they have spread, they become significantly more difficult to treat. Early detection is critical.

Usually, when you start to develop symptoms of abdominal cancer your doctor will send you for an ultrasound.

The latency period between the start of pancreatic cancer for example and the appearance of symptoms is about 10 years.

Early Detection Saves Lives!

A standard abdominal ultrasound is non-invasive and is not as costly as other tests and would include the imaging of the liver, gallbladder, spleen, pancreas, and kidneys in the interest of looking for abdominal abnormality.

Similar to PSA tests for prostate cancer or mammograms for breast cancer and colonoscopies for colon cancer, these tests are recommended to find abnormalities. None of these tests find cancer. But they will show abnormalities that will lead to further tests that many times lead to finding cancer. The primary benefits of these tests is they help with early detection.

In the US alone cancer diagnosis when looking at liver, gallbladder, spleen, pancreas, and kidneys is that approximately 200,000 people are diagnosed with one of these cancers each year and the numbers are increasing.

Our medical experts are working on early detection capabilities like blood tests and they are making progress but any reasonable capability probably is years away.

New cancer treatments are on their way, but it is realistic that they will be most successful when the cancer is detected early and has not become advanced.

New tests and treatments will probably require lots of testing for safety and effectiveness so will take some time.

Facts:

Ultrasounds have been used for decades so safety is known.

Ultrasounds are effective or why would they be used as a first line test for people who complain of symptoms then ultimately find they have been diagnosed with abdominal cancer.

When you look at known contributing factors age is one of the prevailing factors (40+).

So why wait until someone complains of symptoms?

Use this same proven tool for early detection.

It will save lives.

If Lori was sent for routine abdominal ultrasound 5-10 years prior to this year, she would have had a much better chance at survival.

By shedding light on Lori's story, we are calling on medical professionals and policymakers to reconsider current practices.

Recommended periodic abdominal ultrasounds for people in high-risk age groups could lead to early detection and significantly improve prognosis for those afflicted with these conditions.

We need your support to make this a reality. For Lori, and for countless others facing the same fate. Please, sign the petition and help us change lives and change policy.

Link to Petition:

https://www.change.org/.../the-lori-project-please-help.../

Thank you for your support!

Please feel free to contact me here if you have any questions at the email address below.

Allen Morgan

Email: teamlorimorgan@gmail.com

Website: https://teamlorimorgan.com

Hi, been reading and looking for experiences in this sub as my dad passed at 71y last month 2 weeks after his dx. I struggle with the trauma of his hospital days and how everything went. Need to vent and ask questions either to doctors or fellows.

Til end june he was hell of fine. We went end may for vacations. He got year ago diabetis dx, got on diet although he was just little overweight BMI 29 not obese, started daily exersise, no sugars, no alk he wasnt drinking anyways, healthy food etc. Lost weight but like intentionally to control glucose levels. Had a CT scan just a year ago and all was fine. Mid/end july started to complain about unspecific back pain. He thought was the new matress. Well, june already complained about severe insomnia, no pain, just night wakings after only 3hrs and unable to get back to sleep. Insomnia persisted all those months. Back pain was mild at the begining, coming and going. July blood work showed ALF and Ggt were mildly high. Month later, end of august started gastritis like symptoms but still not in pain, had nausea, no appetite, fulliness. After 10 days sent him to GP.

September his leg gets swollen and warm. Told him looks like thrombosis, he refused to go check, he just had veins US july all was fine. Lost another 8kg without trying now in 3 months, but as he watched his diet, he was still over 90kg, a good weight for his hight. At this point I remember thinking that he is ill bc of his voice, it changed to an old man or a sick one :(

12th sept he has US, enlarged liver with several mets biggest 4cm, enlarged gallbladder. He starts to have more of pain and gets ibuprofen600 and another mild one. I start to cook his childhood meals bc I remembered being prego and nauseious and only likeing what my mum had cooked growing up. It worked and he at least had regular small healthy meals.

16th sept MRI shows 7cm tumor on pan tail, mets to liver, spleen, peritoneum.

23th sept gets more pain meds, struggled sitting longer time. Gets deep leg vein thrombo dx and is put on low molecular heparin. Is already anemic and weak.

26th he has another CT to check mets to lungs or bone, none there. But they see small lung embolism, he had not noticed.

30th has appointment to check on plattlets and coagulation and is given date for biopsy 10 days ahead. He complains to doctor about migraine like vision problems and pressure above left eye, but it went away. No one tells him how bad it is, but they tell no surgery for him. This was hard on him. He had gotten that weak I really thought we wouldnt make it to the date. In only 1 weak he wasnt able to walk 100m anymore. He is put on Fentanyl patches. From ibupeofen to fentanyl in 7 days. That night he had a 10hrs wonderful night sleep.

1st october calls me at 8pm complaining abt severe chest pain and excessive sweating. I call ambulance and we rush to ER with a heart attack. A mild one. He is admitted to ICU for monitorization. More blood thinners, vasodilators and now morphine. Not suitable for stent bc incompatible procedure with biopsy from liver. They want to wait 48h. Our hospital allows overnight in ICU box and he didnt sent me home to my little kids. I think he was so hell of afraid, he was a bear of a man never afraid of anything. But now thinking of him not sending me home, he only told me he is sorry he put me through this. He needed me there, he was afraid being there alone. It breaks my heart. I not even thought of leaving.

2nd oct he is hemodinamically stable. Drs take me out to tell me if someone told us how shitty his condition is and what a bad prognosis it has. No one tells him! At night he has some confusions, taking away cables wanting to go to bathroom not remembering where he was. I explain, he remembers, we go back to sleep. 3rd oct breakfast is brought he dosent remember he doesnt like coffee with milk, never drank that. I go get him a tea and when I come back he is like dizzy and confused. He has a stroke. CT scan, back right artery ischemic stroke, left side paralyzed, all concious. Not candidate for disolver due to all of the heparin. Aweful afternoon and night. He asks desperatly all the time for cooling his head and neck, not sleeping, not resting, but no pain. He can speak a little bit, has lot of strenghs in right body side. He tries leave the bed. Later I learned they are not aware of the body side is not responding.

4th doctors asking me what to do if he gets another stroke, hemorrage and needs intubation and tell me they wouldnt do any bc he has such bad prognosis of the cancer and is not in shape for chemo. No one asks him although he is concious and can answer and state his will. I go by them recommendations :( I am not brave enough to tell him or ask him :( He gets agressive towards nurses and tries pull off electrodes and needles. He gets feeding tube and catether and is discharged from ICU to other unit for recovery. Gets 3 to 6 months without treatment. Another restless night where he just wouldnt stop moving right limbs up and down, up and down. They remove catether, he was just to unconfy urinating that way. He had bladder control and prefered the bottle. He tries to remove feeding tube. He is not allowed water, his mouth gets dry. He asks for water, I am not allowed (**cry). He has some hallucinations but knows who I am.

5th oct I leave hospital at lunch time to go home have a shower. He still is very restless with his right limbs. Come back 3hrs later, he is completly wet from sweating, his face, his bed and not moving leg and arm. Still can squeeze my hand, answers is conious. Call nurse, vitals stable, light fever, they give meds. They change his robe and beddings another 3 times, he sweats that much. He has no pain. He tells me he is cold or warm. He struggles breathing and starts coughing badly. With every

4th breath he opens ups his eyes widley and has my hand thight for some hours like this. He says he cant see anything. I Ask for MD at night. They tell me sth must have happened, another stroke/bleeding and he is worsening. Plus a possible infection, plus aspiration. He is given meds to be able to rest and go for a CT early morning. He rests and I go home for some sleep.

6th oct his lungs are filling with fluids, he is not able to move anything nor feel even my hand holding his. They dont do another CT, for them it is clear. They want to put him on morphine pump and sedate. I agree.

7th oct you could see he wasnt there anymore, only a his body. Went home for 2hrs and he passed.

I am traumatized by the desicions i had to make over his life. At that time I was sure I was making the right thing, he never ever would have wanted to be stroke survivor in bad conditions and not selfsufficiant. He had a friend to who it happend, we had that talk. And I just wanted for him to not suffer, to not be aware of what was happening. I was thinking how he gonna make a recovery from the stroke while the cancer was progressing that quickly. He d go from one shit into another more painful one. Doctors seemed to say almost he is lucky getting stroke or heart attack and not living the painful days of pancan. I was convinced I did good. Even doctor friend went through labs and all and stood by my side saying it is a brave choice and the right one. I even thought at that time he should refuse chemo and enjoy what is left instead of being compromised by the side effects.

But week after his funeral all starts getting messy in my had. I read abt palliative chemo and success stories even at stage IV. I read abt stroke recovery. And I have moments I think I failed him. He relaid on me to advocate for him, to push, to fight and I gave him up just like that. I just didnt want him to suffer, and wasnt brave enough to go through the harder stuff to eventually get him some chemo, fenben or whatever. What if I failed him. What if he trusted me to save him, to give him a chance. He just not got any at all and I didnt fight hard enough, I didnt fight at all. And I was never brave enough to tell him he s gonna die, never could verbalize a goodbye, only said over again "you ll go home"...

My mom (63) will be having surgery at the end of December. What are some hospital must-haves or items you/your family member found to be helpful/convenient? I want to try and help her be as comfortable as possible post-sx

It looks like I’ll (39F) be having a distal pancreatectomy sometime very soon. Waiting to hear back from from my surgeon. They have discovered a 1.7cm cyst in the tail of my pancreas, which was first identified by CT 9 months ago, and was only 0.7cm then, so it has grown quite quickly. My case was taken to an MDM yesterday and the drs have suggested some other imaging prior to resection. I have been absolutely freaking out about this, although my appointment with my surgeon today was more positive. They want to go straight to removal as they are more concerned that it’s precancerous (it looks a little suspicious) rather than malignant at this stage, due to my age and absence of usual risk factors. My question is, has anyone around my age had this surgery? If so, what was your recovery like? When were you able to move around and leave the house? I had a c section 15 months ago and this surgery seems so much worse!

My dad (73) has stage 4 PC. It was diagnosed in October after an absolute hellish several months of unresolved pain and weight loss.

I uprooted my entire life to move to be with him and my mom. It’s a choice I’m so glad I made, because I don’t want any regrets. However, I’m so emotionally and mentally exhausted by this.

I feel like my mental health is a roller coaster, I’m never fully mentally present for my toddler, and I’m tired 100% of the time. I’ve been successfully treated for depression/anxiety for years, but this is making day to day life so hard.

I sit here and think about how miserable things have been and feel SO selfish. My dad is going through something so much worse, yet I cry about having to move and build a new life. I feel so guilty. I’ve spent 6 years far away for grad school, and now I find myself regretting it even though I love my career. I just wish I could have more quality time.

Since his diagnosis his pain has been horrible. It took over a month to get it from a 7-9 to a 3. Several procedures, paracentesis, and now methadone/dilauded. He’s down to 120lbs but is comfortable and can eat again. He even started his first chemo and it went well.

I’ve been hopeful the last few days, but today my heart sank. I could see his sclera were becoming yellow. He’s not had any elevated Tbili since this started. Now all I can think is we finally have him comfortable and he’s going to die so fast because of how aggressive his PC is.

I’m just broken right now. Exhausted. Thanks for reading my vent.

Hi there,

I’m praying for some support as my mom was just diagnosed with pancreatic cancer. We don’t know what stage she is in, but my dad would like to transfer her to the Mayo Clinic.

We think it is stage 2/3, based on the doctors initial examination. But we are waiting on a pet scan. She is 61 years old with pretty good health. I genuinely just want honest answers of what the typical prognosis is, since I feel my dad is sugar coating a lot of what’s going on. However, I have heard a lot of progress has happened in this area of cancer in the next few years as I always thought pancreatic cancer was a death sentence,

My mom was recently diagnosed at stage 4 with no symptoms or risk factors (other than age). When I hear about people being diagnosed at stage 1 or 2 (even 3) my first thought is how lucky and my second thought is HOW??? My mom went from being 100% fine (we were on vacation together the week before her symptoms started) to suddenly having symptoms (feeling full quick, pain under rib cage and low back pain). She didn’t have a new diagnosis of diabetes or any history of pancreas issues.

So if you know anyone diagnosed early can you share how that happened? Symptoms or scan, etc.

hi i’ve never come across this group until now but:

in april my dad was diagnosed with stage 1b pancreatic cancer. He went for chemo immediately and everything was shrinking and on the right track. his CA-19 and other numbers were all down on November 1st. He then got diagnosed with stage 4 ascites and is now on hospice. he is taking ativan to sleep but is now getting delusional and can’t really keep anything down. we had to rush him to the ER on Sunday because the fluid was so much that he kept vomiting. He got the fluid drained monday, came home Tuesday and has basically been unresponsive ever since but when he’s up he’s confused. do you guys think it’s time for liquid morphine in hospice? i feel in my heart it is but i need someone else to help guide me. it kills me to even look at him suffering like this. any help or advice is welcome.

My dad was recently diagnosed with pancreatic cancer a month ago and was told he is a candidate for the whipple surgery. He refuses to get any type of surgery or chemo because he read online that he can cure his cancer with a medication called Fenbendazole. Now he keeps needing to go to the hospital because he is having pancreatitis attacks any time he eats food. Any ideas or tips? I'm totally new to this and know nothing about cancer

Happy Thanksgiving

If you or a family member are in need please DM me. I'll respond and update this post later tonight.