r/pancreaticcancer

I wanted to share my mom's story for long time as this subreddit has been source of so much information, and hopefully that someone can learn from our mistakes. My mom has almost never been sick, I think her brain could not comprehend resting as a concept, even after she retired she convinced my dad to buy a small weekend house so she could have a garden. And then I had a baby 2 years ago, her first grandchild, and I do not lie when I say I bought exactly zero things, she was choosing and buying closets, strollers, clothes, everything, traveling between my home country (Bosnia) and Germany, where I lived for last couple of years. That brings us to November 2025, when my dad broke the hip and we all had to take care of him while recovering, he brought some virus from hospital and my mom cought it and could not bounce back. She started losing weight and feeling weak so my sister(she is a doctor) forced her to do some blood tests and they discovered increased sugar and the biggest mistake was finding an endocrinologist that diagnosed my mom with type 2 diabetes and put her on Ozempic. This woman ordered no additional tests for a 72 year old woman diagnosed with sudden diabetes. When my mom started throwing up and feeling horrible we convinced her to quit after 2 shots and she was put on normal diabetes medicine. My sister ordered more blood tests (liver and pancreatic parameters) but they were fine. This is our second mistake, we didn't push for scans since she was scheduled for them in February. Next 2 months my mom complained about not feeling well, nausea with some food, but everything was shoved under newly diagnosed diabetes. Plus winter clothes, big sweaters, my dad didn't notice she was still losing weight, and i could not see it from video calls. She was also increasingly depressed. Couple of days before her scheduled scans she got jaundiced and my sister brought her to the hospital where she needed a biliary stent, biopsy was done and it was diagnosed as PDAC, locally advanced, in less than a week, beginning of March 2026. For additional genetic testing, we had to send material to US, where we found out about KRAS g12d mutation. Scans showed no metastasis, but surgery was not possible due to artery involvement, ans we sent the images to couple of clinics across Europe, which I am glad we did, though they all agreed was not operable at the moment. The chemo was chosen to be Gem/ab as my mom was weakened by this stage, and she was receiving reduced doses. At the time I moved back to my parent's place and would travel 2 weeks there 2 weeks back to Germany, along with my toddler, as I had some months left of maternity leave since I went back to work after 10 months. My sister moved in with them. Our hope was surgery or to keep her alive until the miracle drug comes more widely available to Europe. I did however got in contact with couple of clinics for additional alternative therapies (t-cell vaccines) and they offered a spot but as soon as my mom started with chemo (march 2026) she became to weak to travel. And here is our I think biggest mistake, we focused on food. My mom didn't struggle a lot with nausea, more with diarrhea and it took us time to fix it properly with creon, but she ate 5 small meals a day and we were giving her supplements both through albumin and other infusions, as well as vitamin D, omega, calcium pills. She was not losing weight. However we dropped a ball with exercising. My mom decided she didn't want to go out except for chemo, and even with a nurse she would barely exercise, she just wanted to be in the bed. We didn't know how dangerous cachexia would be. From the first moment she did not want to know any prognosis, so my sister was the one doing all medical appointments, we were full in board for keeping her delusional (my father once joked and told her that since his driving license was valid 4 more years they have at least 4 more summer vacations, she got upset , she said you would have me live only 4 more years). She wanted the time with her granddaughter so so much. We would tell her how medicine changed for pancreatic cancer, stories like for my father in law that had Whipple and is alive 9 years later (though he lives in Spain and had access to better healthcare). We didn't feel the need to have some last conversations since we have never had a day not talking and we really spent a lot of time together so we focused on her being positive. We also shielded out father, in our culture is common for children to take care when parents get sick and doctors basically gave all information to us. The follow-up scans were ordered for the beginning of June, though they did test CA levels couple of times (they were shrinking) and usual blood work to see if she could receive the chemo each cycle. She completed that first round but developed ascites. We hoped it would be solved by diuretics and protein increase, but instead the scan showed progress of the primary tumor, though no distant metastasis. Here my mom went to hospital and is still there more than a month later, with one complication after another. She has been completely bed bound last 3 weeks, with catheter in place and being fed though TPN, by mouth she only drinks some water and takes a bit of soup. My country does not really have a concept of hospice, but the doctors which are my sisters colleagues have allowed a private room for her where we can visit and sleep with her. We know we are close to the end, as she is also having less and less lucid moments for the last 2 weeks (mistakes me for her mother and so on), but they told us they have no predictions as her heart is very strong. So now we wait, as I think due to her being in a hospital with some care does not match the usual timeline. Every day now I have my toddler call me a mom, and then I go to visit my mom to have her call me the same. I am so angry at myself for not catching it earlier, I just wish I could give years of my life to my mom, so my daughter would remember her. I hate it did not happen at least couple of years later so we get that drug here as well.

Im away for college and mom's second cycle of chemo (1 and a half month post whipple) is tomorrow so she shaved her head today. She says its just hair. So please tell me what should I do or say to her. Anything.

Hi, my mum just had her oncologist appointment and was told she would be on gem/abrax for 6 months (3 weeks off / 1 week off).

She's had a distal pancreatectomy and splenectomy mid May, recovered really well although very tired.

I've done so much research since then and was so certain she would be put on Folfirinox. I'm not sure if I feel relieved because the side effects might be less intense, or worried because Folfi has better survival outcomes.

I'm not sure what I'm after by writing here... maybe some reassurance than gem/abrax can have good success outcomes after surgery, or that it's still possible to go on Folfi if there is reoccurence, or that it was actually always to be expected for a 73F with hypertension and overweight....

I think I'm feeling a bit lost, as I had researched so much on Folfi and now feel as scared again as I was at the start...

One day at a time.

(I should add that she is in France)

Edit: sending warm thoughts and love to those who can't get surgery. I do know we are so lucky she could get surgery, and that many can't. Best wishes to everybody ❤️

My 73 year old dad was diagnosed in Feb 2026 with mets to the liver. He did gem/abrax until a couple weeks, but his bile duct got blocked and had a stent put in.

They switched him to 75% folforinox last Tuesday. The actual infusion went great with no immediate side effects. He left beaming with hope! However, the days since (5 days) have been bad, and he told me and my mom he’s not sure if he can keep doing this.

At the same time, he has already gotten the paperwork submitted for the Daraxonrasib and we are waiting. Not sure how long it will take.

My question to you all is, how does someone get through emotionally and physically the side effects of folforinox? I want to respect his feelings, but I also am praying he chooses not to give up just yet.

Hi All,

I am a big believer that miracles can and do happen every single day - so please to those who are fighting the good fight - know that my asking this is about knowing more, coupled with the recognition that every single situation and person is unique.

That said, I guess I’m just wondering what the goal is of undergoing FOLFIRINOX with someone who is stage 4? is it about hoping the cancer will shrink enough for surgery? Is it about keeping the disease at bay? Is it to kill it off entirely? I see what ppl go through when they take it and knowing this I just wonder…what is the goal of the treatment? Does it differ for everyone?

As a DIL I don’t really feel like it’s my place to ask this directly so I’m asking this wonderful, supportive community. I think a lot of the info we’re receiving right now is on a need to know basis…

TIA :)

My father (58) was diagnosed with pancreatic cancer last month. He has a large tumor in the body of his pancreas, measuring about 5x5x8 cm and no metastases. We’ve already sought a second opinion from two hospitals, but both said the tumor is inoperable.

He is devastated because he had hoped so much that the surgeons could simply “cut out” the tumor. We hope we can convince him to try chemotherapy and that, with a little luck, this will make the tumor operable.

Are there any positive stories from people who’ve gone through a similar situation?

And isn’t it unusual to have such a large tumor but no metastases yet?

Hi all , my father is almost 2 months post Whipple but still not eating much. He maybe eats like 500 calories a day if that which is so low. He did have his whole pancreas , spleen and gallbladder removed. We have tried everything and tried to give him what he wants. Was anyone put on any hunger stimulator ? Or tried to anything to help. He’s lost about 40 in less than 2 months. Just seeking advice to see what helped you or your love one who’s in recovery or when through recovery. Thank you much!

Maybe only 3 weeks ago my grandpa went to the ER because of major fatigue and somehow they were able to find he had metastisic pancreatic cancer.

But within that time he's had a heart attack, a stroke, and now he has passed last night right after 4th of July passed. I believe he waited to pass on the 5th bc he knows how much our family finds the 4th a day of family and celebration.

How do y'all process it, I know there is something to be said about him not being in so much pain and not suffering but, how can life change so fast, how can my grandpa be gone.

I felt so angry at my moms hospice team for not telling me how things might look at the end of life. it would’ve reassured me and prepared me for what was to come. Never in my worst thoughts did I ever imagine the awful stages the human body can go through before taking its last breath. I guess I should’ve read the little book they gave me in the large hospice care folder, but I never looked at that stuff once my mom got diagnosed. Even still, some gentle warnings would’ve gone a long way in helping me process the trauma I endured at the end as her caregiver. I’m sure it’ll never go away. So caregivers, prepare for the worst ending, but hope for the best 🙏🏻❤️

Update on my 83 yr old father with Stage 4 pancreatic cancer. Diagnosed in March 2026. Started Gim/Abrax in May with just a dose of Gim. Second round with Gim/Abrax. About two weeks after second round was suddenly hit with pneumonia/respiratory failure. Spent two weeks in hospital on IV antibiotics and oxygen. Sent home with oxygen. He is getting appetite back and mobility is good. Pain overall is not reported to be bad. Should he try to continue chemo?

hi idk if i sound selfish but pls hear me out

we’ve been fighting my mom’s pancan stage 4 mets with liver and duodenum for more than a year now but rn, we just mostly stay at hospital as she either poo blood and for the first time, she vomited coffee ground. She went to emergency as her bp dropped so low but rn its been solved with norepinephrine.

Chemotherapy for 8months really made my mom’s condition worse.. and her body cannot handle it thats why her onco decided to stopped.. altho radiation worked for her but we cannot redo it again as her gastroenterologist said its toxic for her..

With all the pain every hour my kind mom has to go thru, everyday has been unbearable to watch.. thats why when I saw the news about daraxonrasib, it gave us hope but we are from Philippines and we are yet to do the genetic test as in here, it costs a fortune as we dont have the laboratory for it here..

We’re running out of options as my mom is already in palliative care, no chemo or radiation can be given to her current state. Im hoping the pancan gene she has would match the daraxonrasib requirement but idk if we’re even allowed to be part of the trial… or even buy.. i just want my mom to live longer.. i just graduated college and yet to give my mom back the care she gave me.. i just want to show her how beautiful the world is😢

Pls help me.. im very torn… my whole family is.. we will do our best for our mom even if we would be in financial debt for the treatments😢

If you have suggestions pls let me know

praying for everyone fighting this cancer to be healed..

Got the news yesterday that I was approved!spent today doing labs, EKG, and an Echocardiogram. Passed with flying colors and I am now the proud owner of a 30 day supply along with about 7 other medications spanning from antibiotic, steroid, creams for face and body, and mouth rinse to combat the most reported issue of skin rashes and mouth sores. One of them you just start prior to daraxonrasib so I plan to start it officially tomorrow. Today has been a very long and exhausting day. I’m nervous to start. I’m not feeling the excitement though that I thought I would. Just more trepidation. I’m honored to have this chance. I know it isn’t a cure but what if the side effects are just too much. I want the extra time with family but not at the expense of quality time. I think that is where the trepidation comes into play. I’m definitely going to give it a whirl. We’ll see oncologist again in two weeks and in two months repeat my scans. Pray for me. Pray that the drug works and that the side effects are nontrivial to live with.

Had my appointment with my gastroentoligist yesterday for my endoscopic ultrasound and biopsies results. So I have abnormal cells in my pancreas and they are still not sure if they are cancer or pre cancerous but they are going to operate and take it out. They are going to take just that section of my pancreas and my spleen also. I'm also having open heart surgery in august to repair my mitral valve prolapse and severe regurgitation. My gastroentoligist Dr Dowsett says both Surgeons will discuss and decide which surgery first. Both are at Royal North Shore Hospital my pancreas Doctor is Dr Jas Sumra and my heart surgeon is Dr Manu Mathur . I'm overwhelmed as it's a lot. 6 months ago I thought I was healthy. I'm a 61 year old female . Just getting my head around the possibility that I now have pancreatic cancer along with a damaged heart as it is enlarged. 🙏🏿

I’m still fresh from finishing my last FOLFIRINOX/surgery and still detoxing with a lot of recovery ahead. I got a some neuropathy, my gut is a mess, my brain doesn’t work like it used to and taking a dump is still a painful horror show😅 (I am going to treat my butt like a king for the rest of my life; the poor guy has been through hell).

I tried to work a full day yesterday where I just solve other people’s problems. Driving home, I felt irritated and started being annoyed by other people’s driving. The more irritation I felt, the more physically uncomfortable I got, the more sad I got and the more fearful I got that I will just go back to old ways of living and forget everything I’ve learned at cancer school. Cancer helped crack me open and I don’t want to close back up.

What are some changes I can make, practices to adopt, to not go back to what I was before? Reading all the posts on r/pancreaticcancer has helped me this week so far to stay cracked open when I feel I’m closing up. While I’m still so new on the other side of treatment, I can see my new ‘normal’ will gobble me up fast.

I’m from South Korea, and my father has metastatic pancreatic cancer with a KRAS G12V mutation. We’ve recently reached out to a clinical trial site in the U.S. about the RMC-5127 trial, and we’re currently waiting to hear back.
I know every patient’s situation is different, but I was hoping to get a better idea of what the current situation is.

Are most trial sites full right now, or are people generally able to get in without waiting too long? If anyone has recently gone through the process, how long did it take from your first contact with the trial site until screening or starting treatment?

I also have a question about the Expanded Access Program (EAP). For those who have experience with it, does the sponsor provide the medication free of charge, or are there still significant medical costs that patients have to pay? I’d really appreciate any information about how the costs work under EAP.

Thank you so much, and I wish the best for everyone here and their families.

My (F27) mom (F56) was diagnosed with pancreatic cancer last October 2025, and I wanted to share her story because I know how desperately I searched for positive stories after her diagnosis.

When everything started, she became very sick very quickly. She developed severe jaundice, lost a huge amount of weight (down to only 45 kg at 170 cm / 99 lbs at 5'7"), and became incredibly weak. She ended up in the ICU for a long time with multiple tubes and drains. During this time, her father (my grandfather) passed away from prostate cancer, and she was not able to say goodbye to him. At the same time, her best friend was diagnosed with breast cancer and passed away just two months later. It felt like everything devastating was hitting our family all at once. My family is very small. I don’t have any siblings, just my parents and I only have two grandparents. There is hardly any contact with my uncle and his family.

Even getting the diagnosis was difficult. The first biopsy came back negative, but the doctors still strongly suspected pancreatic cancer because of the CT findings and her symptoms. A second biopsy finally confirmed cancer. Her CA 19-9 was over 4,000.

I already wrote a post months ago about why it’s so important to stay proactive. I made sure to get my mum to the best possible doctors because I didn’t feel confident enough in the hospital she was in at that time, and I wanted her to be in the safest and most experienced hands. That decision turned out to be absolutely crucial. I really want to encourage everyone here to try, as hard as it may be, to stay as calm and clear-headed as possible and focus on finding solutions step by step.

Everything became very urgent. Because her tumor was considered borderline resectable, the team decided not to give neoadjuvant chemotherapy. She was transferred between three hospitals before finally reaching a highly specialized pancreatic center in Berlin with an experienced multidisciplinary team.

She underwent an 8-hour Traverso-Longmire procedure. They removed her pancreas, gallbladder, duodenum, and spleen.

Despite everything she had already been through, she recovered remarkably well. She was standing and walking just 24 hours after surgery, stayed in the ICU for about two weeks, had excellent wound healing with no major complications, started eating again only four days after surgery, and surprisingly had very little pain. Her recovery honestly exceeded all of our expectations.

The pathology showed two separate tumors in the pancreas (one in the head and one in the tail), stage pT2N0M0, grade 2–3.

Since her entire pancreas was removed, she is now insulin-dependent and needs pancreatic enzymes with every meal. Of course, adjusting to this was a big life change, but it has honestly become part of her normal routine and has never been a major problem.

Eight weeks after surgery, she started 12 cycles of adjuvant modified FOLFIRINOX.

She completed every single cycle on schedule without delays.

Her side effects were surprisingly manageable: only a few episodes of nosebleeds and some tingling in her fingers. Her blood counts stayed good enough throughout treatment, and she even continued working two days a week in an office job. Perhaps most amazingly, she gained 5 kg (11 lbs) during chemotherapy.

Today we had the follow-up appointment after her surveillance CT scan. As of today, there is no evidence of disease (NED). Her next scan is in three months.

The reason I'm writing this is because, when my mom was diagnosed, I mostly found statistics and heartbreaking stories. Those stories are real and important but they are not the whole picture. There are also people who have successful surgery, tolerate chemotherapy well, recover better than expected, and reach NED.

My mom had several factors in her favor, including no lymph node involvement and no distant metastases, although she did have two separate tumors in her pancreas. She also stayed incredibly determined, positive, and engaged throughout every step of treatment.

Statistics describe groups of people treated in the past. They do not tell you exactly what will happen to you or your loved one. Medicine continues to improve. Specialized pancreatic centers make a difference. New treatments continue to emerge. Every day matters.

If you're reading this because you or someone you love has just been diagnosed, please don't let the statistics take away all your hope. Hope and realism can exist together.

I wish everyone here strength, good doctors, successful treatments, and many more positive stories to come. Even in the darkest moments, there are still real chances for good outcomes hold on to that.

My mum has stage IV pancreatic cancer with liver metastasis. She finished her first chemotherapy (folfirinox) on Monday two weeks ago. She experienced side effects like severe fatigue, diarrhea, stomach cramping, nausea, and a loss of appetite. She was sweating a lot (maybe a combination of chemo and the hot weather) and she felt pain in her abdomen. I measured her temperature several times a day and she didn't have a fever. However, two days ago she suddenly got chills and a fever (38+°C),and she puked. I immediately drove her to the hospital where she had to stay the night. The doctors told me that they thought she had an infection and they had to wait for her blood test results to tell me more. Her condition was serious. She had low blood pressure. Her blood oxygen saturation was low as well. They told me I could leave and I did. I said bye to my mum and told her we would see each other the next day. 30min later the doctor called. She told me that my mum had sepsis and that her ct showed that during the time she waited for her first chemo her cancer had progressed. The doctor told me we only had two options. The first one was the surgery, but she had a minimal chance of survival. Even if she did survive, she wouldn't be able to continue with her chemo which meant we wouldn't have much time left together. The second option was not getting a surgery, but she would definitely pass away. We chose the first option. Because she needed a surgery and she needed it NOW we couldn't make it to the hospital on time to say our final goodbyes. Instead I asked the doctor if we could talk to my mum via a phone call, and she made it happen. I've never thought that at the age of 25 I would be saying my final goodbye to my mum via a phone call. I cried, my mum cried, my father cried. We told each other that we loved each other and that we would see each other tomorrow when she woke up. All we could do was praying. Praying for another chance. Praying for more time spent together. We couldn't sleep. We were so nervous it hurt. When the phone rang the next morning our hearts sank. My dad answered the call and based on his expression I could tell my mum made it! She survived! They had to remove a part of her large intestine (she had two tiny holes) so she got a stoma. And when they opened her up they saw that her cancer hadn't progressed as much as they thought it did! I don't know what having a stoma means for her prognosis tho. I would like to ask if anyone here has a stoma and was able to continue with their chemotherapy.

I'm so sorry for my long "essay" in broken English. I had to write a post, because posting here makes me feel understood. We're all fighting the same monster. I'm sending my best wishes to all of you!

Someone I love so deeply mother just passed away from pancan. Everything happened so suddenly and I don’t know what to do bro. I want to be there for her because she is like my sister essentially. Please someone tell me what steps I need to take to support her the best way possible. I can’t relate to her pain or take it away but I love her and her family so much and I feel lost. I just can’t imagine how she will continue to function and I’m afraid for her mental health.

When we discover a loved one has PANCAN, we usually escape into faith out of fear. That's beautiful, and it's important. But it’s also crucial to know that LOVE is far more powerful, and no matter what happens next, you will love them as much as you can. You will be there. You will sing songs.

Faith depends on a single outcome, but Love is infinite and eternal, no matter what happens. I lost my Mother to PANCAN 8 months ago. Faith blinded me until her last 24 hours. I’m glad I got to stay faithful because it kept me on a better, more energetic side of things—allowing me to be a cheerleader and a supporter for her, instead of a burden.

But damn... I really believed, and I don't know what I would have done differently if I had opened my eyes sooner. I really tested my faith to the absolute extreme. Now, my faith isn't tied to the outcome anymore; my faith is simply trusting that everything happens for a reason. Still, I deeply wish I had known the truth sooner—way sooner. Not just when things got bad, but when things were still okay-ish, because that was when her energy was better, and we could have truly lived those moments even more.

The most beautiful thing that has ever happened to me is my mother's life. Sending Love.

My mom (66) got diagnosed yesterday. We don’t know a stage. She feels fine but is very jaundice. Everyone is telling us she WILL die of this. Is there any hope? Could we really only have a few months left?