Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Profile picture for jerlind @jerlind

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.

Jump to this post

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!

REPLY

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.

REPLY

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.

REPLY
Profile picture for kakalena @kakalena

Nothing would surprise me at this point. I will talk to surgeon who may be doing my nanoknife procedure about a 2nd look. I live in rural Northern California and am receiving treatment at CPMC, California Pacific Medical Center. My chemo treatments have been local.

Jump to this post

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

REPLY
Profile picture for markymarkfl @markymarkfl

@kakalena , Thanks for posting. Please let us know how it goes with the nanoknife, and whether they do the procedure "open" or percutaneously. What stage is your cancer, and where exactly is the (main) tumor they'll be treating?

Jump to this post

Tumor is on the head involving the uncinate process, abutting the SMA,
encircling the SMV and into a smaller vein. The tumor needs to shrink by
25% in order to receive the Nano-knife. Not sure yet how and if it will be
done, but CPMC has done over 100 of this procedure. Ruled out Whipple due
to venal involvement.

REPLY
Profile picture for omarcamacho74 @omarcamacho74

Hola me diagnosticaron cáncer de páncreas en mayo del 2023 en estadio IV con metástasis en la pared del estómago, cómo el tumor obstruyo el dueno ya no pude alimentarme y de 81 Kilos baje a 50 kilos, me operaron para poder unirme el estómago con el yuyeno y poder alimentarme, no pudieron quitar el tumor del páncreas porque estaban comprometidas la vena orta y otra. Posteriormente me dieron quimioterapia, ya llevo dos años en el proceso.

Jump to this post

Welcome, Omar! My Spanish is limited, but I was able to read and understand your message without the automatic translator because my case was very similar. I could not eat, and lost 10 kg (from 70 kg to 60 kg).

My duodenum (duodeno) was removed during the Whipple surgery. The surgeons have placed two stents to open my stomach outlet through the jejunum (yeyuno). I can now eat a limited diet by mouth, but still receive parentaral nutrition via a feeding tube in my chest.

How are you doing now, after two years of chemotherapy?

REPLY
Profile picture for kakalena @kakalena

Nothing would surprise me at this point. I will talk to surgeon who may be doing my nanoknife procedure about a 2nd look. I live in rural Northern California and am receiving treatment at CPMC, California Pacific Medical Center. My chemo treatments have been local.

Jump to this post

@kakalena , Thanks for posting. Please let us know how it goes with the nanoknife, and whether they do the procedure "open" or percutaneously. What stage is your cancer, and where exactly is the (main) tumor they'll be treating?

REPLY
Profile picture for omarcamacho74 @omarcamacho74

Hola me diagnosticaron cáncer de páncreas en mayo del 2023 en estadio IV con metástasis en la pared del estómago, cómo el tumor obstruyo el dueno ya no pude alimentarme y de 81 Kilos baje a 50 kilos, me operaron para poder unirme el estómago con el yuyeno y poder alimentarme, no pudieron quitar el tumor del páncreas porque estaban comprometidas la vena orta y otra. Posteriormente me dieron quimioterapia, ya llevo dos años en el proceso.

Jump to this post

Hopefully the tumor will shrink so that it can be removed. Meanwhile, be sure to receive second opinions even if they are virtual telephone calls
You want opinions from very high volume facilities.

REPLY
Profile picture for stageivsurvivor @stageivsurvivor

CA19-9 has never been used as a stand-alone diagnostic test because of a number of pathologies and inflammation causing its elevation. If you have an elevated CA19-9:and acinar, it is likely you have a mixed tumor type with ductal adenocarcinoma. I know of a couple of instances where mixed tumor types were missed on initial morphological examination and when sent to MSKCC for a second review, PDAC was found and the diagnosis changed to mixed PACC and PDAC explaining the presence of an elevated CA19-9.

In those that express CA19-9 with the PDAC form, it can be useful to monitor efficacy of treatment by observing its trend of values. No single point is of value in making a conclusion. It requires several successive measurements.

Jump to this post

Nothing would surprise me at this point. I will talk to surgeon who may be doing my nanoknife procedure about a 2nd look. I live in rural Northern California and am receiving treatment at CPMC, California Pacific Medical Center. My chemo treatments have been local.

REPLY
Profile picture for martyp01 @martyp01

I have been told and see online that CA19-9 is a general indicator only. My CA 19-9 started >20,000 in late April this year (2025) and dramatically reduced each time tested until reaching a low of 299. Then it has been going back up a bit to 513. My doctor's response was it was trending around 500, again emphasizing the "trend" instead of absolute numbers.

Jump to this post

Thanks for your comment re ca 19-9. I was told the same thing by my oncologist, that it's a trend.

REPLY
Please sign in or register to post a reply.