Pancreatic Cancer Group: Introduce yourself and connect with others

What stage is your cancer at? 3 or 4? depending on this Nanoknife may be a good approach.

was diagnosed with adenocarcinoma of the tail and body of the pancreas with a lung metastasis at the age of 79 in April 2024. Subjected to chemotherapy with abraxane and gemcitabine every two weeks from May 2024 to February 2025 and stereotactic radiotherapy in November 2024 in the lung and in December 2024 in the pancreas. During the treatments the ca 19.9 dropped regularly from 1400 in May 2024 to 15 in January 2025 to rise slowly, but within the limits of the norm, from February to June. The March PET and the April CT scan indicate the absence of tumor activity. From July the rise of ca 19.9 accelerates and exceeds the normal limits. August 20 is at 87. Throughout this period I have continued my normal life which from 2021 means being the caregiver of my wife who is the same age as me and suffers from an abnormal form of senile dementia. In the next few days I will face the tests of the case.

Jerlind1- my wife has stage 1b pancreatic cancer in the head. She has gone through 8 rounds of chemo but now doing daily radiation with chemo once per week. The mass had invaded the bile duct which caused severe jaundice. ( without the jaundice, we would have never known about the pancreas involvement). She had a stent put in to free the bile to her other organs and intestines. The stent has been obstructed once about 2 months ago and had an insert placed in the stent. We were told that the obstruction could return and cause another surgery to clear it. Any comments on a Wipple surgery or another route? The cancer is in the pancreas head.

I am not thoroughly informed on why 1 treatment is recommended over another, but I also was diagnosed with a 1b pancreatic cancer in the head, February 2025. I live in CO, and am treated at UC Health. The recommended treatment was chemo first - I had 5 rounds - then the Whipple, and now 7 more rounds of chemo to make 12. Radiation was never mentioned. I was told it was good that I was a candidate for the Whipple, it was the best chance for a positive outcome, and that stage 1 was ‘curable’. Not guaranteed, of course.
I was 71 when I had the surgery, and in good physical shape prior to being diagnosed in Feb., doing a lot of hiking and going to the gym 3X/wk.
I thought about getting a second opinion at the beginning, but didn't want to waste any time, so just checked that both the hospital and surgeon were ‘high volume’ for the surgery, this is very important. I’m doing well now, with 4 more rounds of chemo (Fulfirinox) to go.
Hope this helps!

Thank you for your comments! The best to you.

Hello:

My name is Judy and I’ve already forgotten what I used to sign in. I was a member, but when my hard drive failed, I never could get back on with my original name and password. I had to make up a new identity. But I have a lot of posts if you go back far enough.

I had the Whipple Nov, 2022. I was clean until last week when my very low numbers, 3, 5, 6 etc. jumped to 45. I had a PETScan and an ultrasound biopsy , the biopsy today, but I am not holding hope from another miracle. All this new stuff within the pst two weeks. Today is (9/3) since my nerves failed again. Everyone at Mayo (Jax) has been terrific. Yet I learned a lot on this blog. So, once again, I am hoping to learn more.

Looking forward to reading how others are doing and handling this difficult disease.

Thank you for reading part of my story.

Judy

Hi I'm Danielle, just had a biopsy on 9/2 the results came back positive for adenocarcinoma yesterday. Waiting for an appointment to meet with the Oncologist. Does anyone have any advice?

Danielle, I'm sorry to hear about your results. I was in your situation late April 2025. I highly recommend you gather as big of a support system around you as you can. If you're religious get everyone you know to pray for you and your family for peace of mind.

Try to always bring someone with you to your appointments. There is so much coming at you and having another person you trust listening to the doctors helps enormously to remember what was said.

Before you start treatments, find out about and consider getting into Clinical trials. Sometimes they won't accept after starting other treatments. Your oncologist should have resources available about clinical trials.
tricanhealth.com - clinical trial site a bit easier than the .gov site
clinicaltrials.gov - the main government database of clinical trials

pancan.org is another good website with Pancreatic cancer info in addition to the Mayo sites.

Most importantly keep a positive attitude that you can beat this.

I'll be praying for you.
Marty

@danianderson7 ,

Hi Dani, sorry to hear about your diagnosis.

There are some good questions and thoughts to consider in these two archived threads:
https://connect.mayoclinic.org/discussion/newly-diagnosed-questions-to-ask/
https://connect.mayoclinic.org/discussion/which-questions-should-i-ask-my-surgeon-i-think-whipple-is-likely/
There may be some overlap between the comments below and those threads, but I don't recall everything they contain, even though I posted several of them (2 years ago!) 🙁

1) Ask if enough biopsy was taken and saved to submit for NGS (Next-Generation Sequencing), i.e. genetic/DNA/IHC testing to identify any mutations, fusions, protein overexpressions, or other "alterations" that might be targetable by a customized treatment or clinical trial. Knowing this might not provide immediate benefit, but definitely will in the longer term.

2) Also get genetic testing done of your germline (inherited) mutations to help identify whether any can be targeted by customized treatment; same goal as (1).

3) Remember that this first appointment will most likely be with a MEDICAL oncologist. (SURGICAL oncologist, RADIATION oncologist, and RESEARCH oncologist / Trials Coordinator oncologist will come later.

Your first and soonest appointment with the medical oncologist is probably someone set up by referral from your primary care doc or other provider who made the diagnosis. This does not have to be your medical oncologist or institution for the long haul. Make sure you get affiliated with the best pancreatic centers of excellence you can access (insurance-wise and geography-/travel-wise). High-volume providers at these institutions have better outcomes, more resources to address related problems, and more access to clinical trials.

You will probably be pushed to start systemic, standard-of-care chemo as soon as possible. Don't let them rush you into a decision you're not comfortable with, although it doesn't hurt go get a chemo port placed if they recommend that. You'll probably need that sooner rather than later, and having it will avoid delay starting treatment wherever you decide to go.
(* "Rush" should factor in your current condition and likelihood/risk of metastasis, but hopefully not more than 3-4 weeks max.)

Wishing you the best!

I'm Jill. Like Danielle, I just received my biopsy results of "invasive adenocarcinoma, well-differentiated". The doctor who did the biopsy says it's either Stage 1 or Stage 2, more tests will be done by an oncologist to know for sure. I will be referred to OHSU (Oregon Health & Science University). I expect I will be set up for a distal pancreatectomy as soon as possible. Has anyone had this surgery with success? My primary doctor has yet to consult with me. This is all so new...
I'm also curious if anyone has found that it was IPAS (Intrapancreatic Accessory Spleen) after the surgery? IPAS is benign but mimics a tumor/adenocarcinoma and is difficult to identify.