Pancreatic Cancer Group: Introduce yourself and connect with others

Hello
All my treatment was at Mayo on Rochester, they are excellent in personal care and the Doctors are outstanding.
I had 9 rounds of aggressive chemotherapy before surgery and 3 after.
I’ll have to check concerning mutations
Thank you

@1954now
From what I’ve read, you were able to receive care from one of the best facilities around! I wish you continued good care. My husband and I are always surprised that we really don’t have facilities on the west coast that offer the same level of care. I guess the best drs aren’t really concerned with getting that warm, sunny weather that California has to offer as he thought! Hoping that all changes once City of Hope finishes building their hospital next year that received a huge endowment for pancreatic research.

Hello. I am caregiver for my husband who was diagnosed with pancreatic cancer in Feb. 2023. He had both chemotherapy and a Whipple Procedure. He is doing pretty well and blood tests and CT scans show no signs of cancer. He’s on enzyme therapy. But we still have concerns with his digestion.

Hello All...yesterday, I had a second type of scan. This time, I had to drink some kind of liquid and the Doc's included contrast. Rather than a tube machine, this was a donut machine. I received a report on process already but it had too many medical terms for this simple mind to understand with any kind of clarity. I speak with the specialist again tomorrow for review of the findings and to make a decision on the next step of the staging.

I'm so happy that a majority of the medical professionals I've dealt with seem to have a calling for helping others. That's evident in how they've treated me through this process. Helpful, flexible, and understanding.

TK

Hi, my name is Dana.
I was diagnosed with stage I or II pancreatic cancer in June of 2023. It was approximately 2cm on the head of my pancreas. I did 3 months of chemo and had whipple surgery in January of 2024 at UCSF in San Francisco. All of the margins were clear after surgery. My surgeon wanted me to do another 3 months of chemo after the surgery. I did that and my tumor marker CA19-9 was normal at 35. My scans have been clear for 10 months. My oncologist decided to just watch it and do scans every 3 months. The problem is my CA 19-9 started to go up, and now my oncologist is suggesting more chemo, which I do not really want to do. Anyone else have this problem?

@carneydh
Congrats on catching your tumor in the early stages - that is key to fight this thing. Secondly is to have good oncology and surgical team and to be aware of what your mutations are as they signify the aggressiveness of the type you have and what treatment for drs to use. Mine are KRAS12D, TP53, and some type of ATM mutation. After my surgery and 12 cycles of fulfirnox chemo my cancer after 4.5 months without chemo came back as a lesion in my liver. These are difficult to see on a CT and easier to see on MRI, particularly when they are small. I’m now on GA chemo basically since January of this year (cisplatin was dropped from my chemo cocktail in September) and I received MRIdean radiation in October of this year for lesion on my liver). My CA19-9 went from a 6 to 3840 in 4.5 months. What is yours?

Sometimes it takes trial and error to figure out the dosage you need to aid in digestion. I had the distal surgery which is not as invasive to the digestive system and I no longer need to take them. Also, diet is crucial- stay away from fatty foods (difficult to digest) and eat food in small portions.

My last chemo treatment was Oct. 30, 2024. My CA 19-9 was 35. Now it is 371.

I don’t know if your tumor has metastasized, but it wouldn’t be out of the realm of possibility. The key is to act quickly. A common path is to spread to the liver. For myself based on posts from others on this site, I asked my oncologist for an MRI. PET scans are good, but not always 100% in diagnostics has been my personal experience. For pancreatic cancer that has spread Gemticitamine and Abraxne and maybe Cisplatin (if you have BRCA/PALB and maybe other mutations that I’m not familiar with)are much less harsh but generally effective for most people experiencing metastasis like myself. Focused radiation is something you can add to the mix if you decide. Please also consider a second opinion, even by video, if you don’t feel like drs are responding to your needs. Which state do you live in? Others might be able to give you some recommendations for 2nd opinions on where to go.

Inflammation in the body is an alternative condition that can raise tumor markers like CA19-9, but it’s best I think in cases like cancer to rule out worst case scenario first. I’ll be praying for you that you get the results you need. I began GA chemo in January this year and now my CA19-9 is 16 and I feel great!