Looking to get CBD for my mom who has bad pains. She is on hydromorphone slow release 3mg twice a day and fast release hydromorphone 1mg every 4 hours. The pain could be much better managed and the dose increases from the hydromorphone cause shortness of breath and too much weakness. What is the best type of cbd product for pain around the pancreatic head area? Would CBD cream applied to the pain area be helpful. Thank you in advance!

I have so much anger built up after my dad’s diagnosis, and I hate it. He’s undergoing chemotherapy, and he’s exhausted most of the time, but I can’t help but feel angry. I try not to dwell on it too much, but this situation is truly awful.

We are having great success enrolled in a Revolution Medicines clinical trial, and my question is re durability. How long can we expect the current study drugs (9805 and 6236) to keep working?

my mom was diagnosed with PC stage 4, Kras G12D, had Whipple, chemo, spread to liver, then she was accepted in Q1 2025 to a trial and her mass has shrunk consistently and CA-19 is down to normal range levels (single digits), and side effects are tolerable.

Had asked the doctor if reducing the dosage may extend the potency/efficacy and was told "it doesnt work that way". Would like to understand why not?

As a layman, it occurs to me that this is a reasonable approach to sustain the current response. Her ca-19 cant go any lower, her mass is less than 2mm, why not lower the dosage?

Am so grateful this ttial is available.

Dr. Truty, thank you so much for hosting this event and helping so many people.

My mom was dx with pancreatic cancer, had a Whipple surgery, and it spread to the liver. She has the KRAS G12D mutation.

1. What is the most promising 2nd line clinical trial after RMC 9805? Would you consider another KRAS inhibitor trial or Claudin-specific trials?

2. Would you consider doing a Y90 procedure if there are many small mets to both sides of the liver?

3. What are the most innovative and effective treatments other than chemotherapy?

4. What supplements and holistic treatments do you recommend in general for pancreatic cancer patients? What can patients do to live as long as possible and delay and/or prevent recurrence?
   Thank you so much for sharing your insights.

Makes my head hurt

https://en.wikipedia.org/wiki/Cytotoxic_T_cell

So I have been posting to this sub Reddit for just over than a year. Like most all of you I got genetic testing to see if I had a mutation that made it easier to to get rid of my cancer. I can’t remember exactly what I was told, but basically the message was just normal regular adenocarcinoma and no appropriate trials for me.

In the last year I have been in support groups where everyone talks about their KRAS mutations and which trials were good for which mutations. I mainly tuned this out as I believed it did not apply to me. I did well on NALIRIFOX and finished 11 rounds before switching to maintenance trial of capecitabine and Ivalintostat(an immunotherapy) this failed spectacularly and I ended up with peritoneal spread and pretty impressive ascites. After a few paracentesis procedures I ended up in the hospital with sepsis due to bacterial peritonitis. After discharge they put me on gem/abrax/ cisplatin. The ascites immediately stopped and I fid well for a few months. Then I got sick again had to reduce dose of chemo. Ended up in the hospital needing transfusion of PRBC and platelets. Then discharged and immediately developed ascites worse than ever 7.4 liters was the last. Worsening carcinomatosis on CT Scan but everything else stable. Liver Mets stable pancreatic mass stable and labs showing stable disease.then new ascites greatly knocked me down and the look my oncology gave me was not encouraging. I had radiation on a met deep in my liver and histotripsy x 2.

So feeling like the end was near, my oncologist sent me to another oncologist in the same department to start me on some trial of FOLFIRINOX and some sort of souped up pet scan to deliver radiation to the metabolically active areas and deliver a payload of radiation to the cancer. I would have to isolate from my family as I would be actively radioactive for a few days.

Ok here’s where it gets good

I met with the new oncologist today and he took an insanely detailed history and had all my scans and labs. He basically said forget that trial with the mega pet scan we have something much better for you. He said that because of my KRAS mutation and my HLA subtype, I was the perfect Candidate for a different trial. It’s extremely burley where they annihilate your bone marrow and keep you alive in the hospital for a couple of weeks while they infuse you with special killer T cells that propagate in your bone marrow and apparently very effective at killing cancer. He told me he’s very optimistic for me. 2/3rds of People in my position and my genetics get long term remissions. It was so surreal to feel like time had run out for me and I was destined to die gasping for breath because of ascites. All of a sudden this guy is telling me it’s going to be tough but you’re going to make it. I’m still overwhelmed with emotion but I just want to tell everyone. Please for god’s sake, don’t give up. The treatment that works for you might be just around the corner. I feel so many things, it’s just insane. I went for impending doom to some kind magical gift. I will update when I get more Details.

A tool for finding clinical trials

my mom is 84 years old and was diagnosed with stage one a in January. She opted to do no treatment whatsoever. She did really really well live in normal life until about a month ago when the pain became increasingly there. The past week she’s asked for more medicine and she is on 212 fentanyl patches and is taking 2 mg of hydromorphone about every four hours. Today is Wednesday Friday she has a celius plexus block scheduled with the G.I. The last two days she has slept about 12 hours a night and then taking a nap. She’s trying to get ahead of the pain all morning and then around 3 PM. She tends to have a good couple hours. She’s enjoying watching the U.S. Open and every time she eats it’s excruciating pain so she’s just been drinking nutrition drinks. I feel like this block might work because it could help the pain after she eats and maybe get more strength back. I’m wondering if I’m doing a bad thing having her do the procedure. Everything I read is saying it’s not invasive. and she would like to do it. We are going on hospice as soon as he’s done with the procedure. Is this a waste of time? Or is it something we should do. Last night she slept 12 hours and she got up to go to the bathroom and went right back to sleep. Thank you

Anyone has experience or advice as I just got my first round of folfirnox and I’m experiencing terrible bloating that’s causes me to feel i am grasping for air.

My dad was diagnosed with Pancreatic Cancer stage 2 on July 2021, he was not elegible For surgery but his tumor shrunk due to chemo and was “contained” from March 2022 to February 2025 which was considered a miracle, no metastasis (sorry english is not my first language).

Since february, with the growth of the tumour he has been facing different symptoms, he had a severe case of ascites which caused vomiting and náusea. They drained like 10 litres of fluids and he has been in the hospital ever since. They started feeding him through a tube and during 7 days he feels so much better.

They tried feeding him 2 jellos and some apple puree but he vomited that and also keeps feeling nauseos.

What could be going on for him to have these symptoms? He lost like 10kg and has been slowly regaining them as they feed him through the tube. The tube feeding has also made his digestive system work and he has been able to do number 2.

They did an endoscopy and found no blockages.

They are most likely going to send him home with the tube feeding, and when he gains a bit more weight, keep going with chemo.

Thanks 🙏🏽

Please help. My uncle has stage IV pancreatic adenocarcinoma and we meet with our oncologist Thursday. I am desperate to hear from anyone with similar mutations or treatment experience so we can discuss potential options.

He was diagnosed in February 2025 with biopsy-proven spread to liver and lungs. His tumor profile showed KRAS wild type with an OCLN fusion plus small percentages of BRCA2 (0.8) and NF1 (0.01).

His first line was a clinical trial with gemcitabine, abraxane, and a medical device (TheraBionic) but he progressed after two months. He then tried FOLFIRINOX but had no response. He is now on modified FOLFIRINOX with pegfilgrastim support. We had to skip one week due to low counts and his CA 19-9 markers shot up by 10,000 and are 31,754. Until the last week, they were decreasing rapidly. His original marker was over 174,000 in early May.

Scans in February showed a large pancreatic tail mass, multiple cystic liver lesions, and lung nodules. June scans showed stability. Our most recent scan showed some regression in the liver lesions. There are also suspected hip spots that are beginning to calcify, and our tumor board suggested radiation. A PET scan is scheduled for Thursday.

The good news is that he is doing very well physically. His weight is up from 168 to 180, his color is back, his appetite has improved, and his diabetes is finally under control with insulin after months of sugars in the 300s. Aside from hip pain, he feels strong.

We are being treated at one of the best cancer hospitals in Michigan, ranked in the top 6 percent in the nation. His case was originally overseen by the hospital president and then transferred to his trusted colleague to avoid conflict of interest with the device trial.

Has anyone here dealt with KRAS WT with OCLN fusion or low BRCA2 and NF1 percentages? Were there treatments that worked after FOLFIRINOX failed? Any insight or direction would mean the world to us as we prepare for Thursday’s appointment.

Has anyone had this combo of results before? My moms CA 19-9 has been trending up the last month from staying steady at 100 to 202 to 220 to 280.

Ctdna (signatera) results from late July just came back negative.

I have no idea what to think about this roller coaster. She gets a PET scan tomorrow but I’m just looking for any shared experiences.

Thanks everyone and praying for all of you on this same journey.

Hey all 👋🏽 my mom (73F) just started Folfirinox last week and the diarrhea hit pretty hard. She isn’t able to make it from her bed to the bathroom on time, and has had a few accidents.. luckily I was able to convince her to finally try on some disposable underwear to make clean up easier, since she has refused to wear them up until now (over a year into her diagnosis/treatment, before it was only urine leaks/accidents). Looking for something comfortable for her to wear during the day and at night and maybe won’t make her feel like she’s wearing a diaper. It’s more of the mental thing for her.. any recommendations from anyone would be so appreciated 🙏🏽

so my dad has had cancer many times. He had Hodgkins Lymphoma 3x and prostate cancer 2 years ago.

My dad recently just had a triple bypass heart surgery due to radiation and hes doing MUCH better.

So my dad a few weeks ago had jaundice his eyes were yellow and he got it fixed and hes normal now. But today I learned that he has a very small malignant tumor pressing against his pancreas.

So the plan is he will get chemo for six months then get surgery then it will be okay.

Ive read in many places the survival rate for even caught early is like only 40 percent and im really nervous about losing my dad.

I’m Dr. Mark Truty, a pancreas surgical oncologist at Mayo Clinic in Rochester, Minnesota. My primary clinical focus is on treating patients with pancreatic tumors, especially those who have been told their cancers are inoperable. I’ve dedicated my career to developing and applying novel staging methods, preoperative therapies, and developing advanced surgical techniques that make curative-intent surgery possible for patients who previously had no options.

My passion for this work is deeply personal. I lost my father to pancreatic cancer when I was a young adult. That experience shaped my mission to offer hope and extend life for patients facing this devastating disease.

To learn more about pancreatic cancer care at Mayo Clinic visit: careinfo.mayoclinic.org/pancreatic-cancer-mn

Disclaimer: This AMA is for general informational purposes and is not a substitute for individualized medical advice from your treating physician.

You can start submitting your questions now, so go ahead, ask away!

Thank you for joining me today! It has been a great pleasure connecting with you. I truly appreciate all your thoughtful questions. Wishing you a wonderful day ahead! God Bless.

My mom (72F) otherwise healthy but long-time smoker was diagnosed with pancreatic adenocarcinoma on July 17th. She had a biopsy done at SHARP in SD with Dr. Mohammed Saadi and he completely failed protocol by not placing a stent, which triggered severe acute pancreatitis. She was hospitalized for four days with severe pain. To make a long story short, she had free fluid around the pancreas measuring about 13 cm and the CT wasn’t entirely clear but the tumor at the head of the pancreas measured 4 cm x 4.1 cm.

I got her in at UCSD and at the time she was designated borderline resectable and eligible for a clinical trial. However, as she was in the process of doing CT staging they said they now see a defined rim measuring 18cm that may be an obvious pseudocyst, formed after the pancreatitis. What they also noted is that they see irregularity along the peritoneal wall and “nodularity” that’s suspicious of peritoneal carcinomatosis. However, the doctors mentioned that it could be from the inflammation caused by the pancreatitis. They did find a spot on the right lobe of her liver but it’s too small to tell if it’s spread or not.

Well, she’s no longer eligible for the stupid clinical trial and she did have the pseudocyst drained. The preliminary report came back from cytology and they said that the fluid is benign. But now I wonder if what they see on the scans is in fact peritoneal carcinomatosis or just the inflammation from the pancreatitis.

Has anyone gone through a similar experience?

I am just wondering how many people had multiple MRI’s and CT scans that did not find anything?

I have been unwell for about 15 months. In that time I had about 8 ct scans/ Mris. Including 2 mrcps and a CT scan pancreas protocol.

My last standard MRI noticed something on the pancreas which has now led me to an EUS which I am waiting for.

I am just wondering why all of the other scans didn’t show anything.

I have had to advocate for myself the whole time because I knew how ill i was.

Is this a normal occurrence?

Also any tips on how to get through the EUs? Never been put to sleep before

I haven't felt ready to tell many people I see in real life. I haven't even told my roommate.

My mom passed away last night in her sleep. She had been diagnosed in mid-March. She elected to not do any treatment.

The last 2 months or so, she was very weak. A week and a half ago, her mental capabilities began to slip. She started hospice visits every other week shortly after her diagnosis. Upped to weekly less than a month ago. We had just gotten her set up for daily visits the other day, but she was at the point where she was in and out of reality, lost most of her short term memory, and was getting stressed about her confusion.

I'm glad she passed peacefully, but I am struggling with the grief, though I expected to.

I haven't visited this subreddit since around her dx, but just felt that stopping through here again seemed right.

I want to say, she took this on with no real fear for herself, always had consideration for us, and I appreciate that she handled a lot of her end-of-life things so that we wouldn't be left with them. I just wish, as I'm sure almost everyone else here does, that we had more time.

I will think of this community often, and I wish everyone who has had need to visit here comfort in whatever way they need.

Hello everyone,
I’d like to ask for your help to see if anyone has any ideas about what further treatment options might be possible for my mother (62 years old). I’m sorry this will be long, but I really need to know whether she has received every possible treatment available — that alone would give me some peace of mind.

She had a bit of stomach pain on New Year’s Eve, but no other symptoms. She worked as an orthopedic surgeon for over 30 years and thought it might just be an ulcer from work-related stress, so she went for an ultrasound.

On January 8, 2025, the abdominal ultrasound revealed about a 50x42x40 mm pancreatic tumor, as well as multiple liver metastases, retroperitoneal lymph node metastases, and a right adrenal metastasis.

Chemotherapy started in January: FOLFIRINOX, 5 cycles (every other week). Unfortunately, it showed no progress — the pancreatic tumor did not grow, but the liver metastases did (both in number and size).

On April 14, she began treatment with Gemzar + Abraxane, which initially appeared successful, with CT showing reduction of liver metastases.

On July 19, she suffered a minor stroke, from which she recovered without lasting effects, but on August 3 she developed deep vein thrombosis (DVT) in her right leg (despite being on high-dose blood thinners continuously). She was hospitalized for a week, and chemotherapy was stopped for a month. Her last chemotherapy was on July 29.

There is also a genetic background: an ATM gene mutation was identified.

The August CT scan showed new progression (pancan is now approx. 60x55mm, liver meta is approx. 40-45mm), and according to the angiologist’s report, continuation of chemotherapy is not recommended. She is now very unwell: short of breath, unable to walk properly, very weak. On July 27 was my wedding, which we held earlier than planned because of her condition — at that time she was a bit weak but still danced and had an appetite. Over the past month, however, her condition has deteriorated rapidly, and I feel completely helpless.

Tomorrow we are seeing a pancreatic cancer specialist, so I would like to know if others are aware of any treatment options I could ask about. Perhaps olaparib could be a possibility because of the genetic mutation — I have read that it can sometimes be effective.

Also, could you please confirm whether surgery is indeed completely excluded in the case of such extensive metastases? Everywhere I’ve asked, they said there is no chance for a surgery — but I know without surgery survival is almost impossible, and it seems chemotherapy is not working for her.

This podcast interviews one of the oncologists running the mRNA pancreas vaccine at Memorial Sloan Kettering. The phase 1 clinical trial demonstrated promising results that an mRNA vaccine can be tailored to an individual’s tumor and be effective [ https://pmc.ncbi.nlm.nih.gov/articles/PMC11946889/ ]. A phase 2 trial would try to show statistical relevance in patients who recently had a surgical resection and no signs of recurrence [ https://clinicaltrials.gov/study/NCT05968326 ]

My husband completed 6 months of fluforinox for stage 4, about 4 months ago and got really good results. But ever since he completed treatment he has been different. He is agitated and angry all the time. He often goes into rages. Has anyone else experienced this after completing chemo?

My BIL was diagnosed this July with Stage 4 PDAC with KRAS G12R mutation, mets on liver and peritoneal area. He is currently on Folfirinox cycle 3. He was looking at the clinical trial RMC 6236 down the road but was told that they have stopped enrolling. We are desperately looking for options on pan KRAS trials as well as off label treatments with the current chemo. Any doctor recommendations who do off label in the SF bayarea? We looked at the careoncology regimen but do not want to do anything without a doctor's supervision. Anyone who has tried these off label treatments in parallel with chemo do you have any recommendations.

My dad had a stage 1 pancreatic tumor 3 years ago. No chemo, and had a whipple done . Margins were clean. Doctors were very optimistic which is rare they told us .

Here we are 3.2 years later, every scan and blood test has been clean ever since . My dad has no symptoms , has even gained back his weight and feels strong. A week ago, he had his annual blood work done, and ca19-9 came back with a level of 525 :(

We were stunned. Even though we knew it’s always a possibility , it just seemed like everything had gone right and bam! All other blood tests are all normal . CT scan is this coming Tuesday .

Realistically, is there any hope that it’s something other than a recurrence ? Filed with anxiety .

This morning my mother passed through the pearly gates, 8 months after her diagnosis, and it is bittersweet. I loved her so very much, she was the kindest, most considerate, and strong soul I have ever known. She put up a tremendous fight and always managed to keep her spirits high through the whole process. I am so glad that she is no longer suffering but the pain of no longer having her weighs so heavy on my heart.

She loved her children, her husband, her pet dogs and chickens. She liked to workout and do charity walks. She was an avid runner and enjoyed orange theory fitness. She always ate healthy and took her supplements every day. She was a leader in business and made it to the highest levels achievable in her professional field. This is so backwards how this could happen to such a healthy and vibrant soul.

I love you mom and miss you everyday, I look forward to when we meet again in heaven, until then I'll do my best to make you proud.

Edit:

Your kind words and sentiments have helped so much to ease my pain and I thank you all so much for the support. I hope someday this disease can get the recognition it needs so early detection and screening is implemented as standard practice. I always wondered how things might have been different if we caught it earlier. God bless you all and I hope the best to anyone who has to go through this terrible ordeal.

Hi, MIL age 72 diagnosed with stage 4 pancreatic cancer and she started folfox in the beginning of June and then increased to the full folfilronox in mid July. Her numbers are looking great, CA 19-9 went from 13,400 to. 1,800. Bilirubin level went from 25 back to normal. She is on the right track (Dr thinks). We are just wondering how chemo affects people physically. She definitely is depressed and we are already asking for Zoloft to be increased, but she is talking about not being able to walk, and really.., we don’t know if it’s in her head or if chemo has that effect on people physically We want to be sympathic but we also don’t want her to have a self fulfilling prophecy… any insight would be appreciated.