Pancreatic Cancer Group: Introduce yourself and connect with others

We were told that because it had metastasized to the liver - there are multiple spots- that surgery is not an option.
Yes, we are in the Ptecision Promise trial at SK. His liver tumor has shrunk by about 50 percent and the liver Mets are stable and also decreasing.

Can you explain why the surgery was considered not an option?
Also are you taking the trial treatment at SK?

What hospital are you at? We were told multiple times
that surgery is not an option once there is metastasis to the liver. My husband is also Stage 4 in tail. Mets to liver. Markers have dropped from about 5000 to under 200 and both tumor and liver Mets are shrinking on gemabraxane plus pemravulab in a trial.
At MSK in NYC

Hello, I was diagnosed stage IV PCan 12/2021. Tumor in the tail as well as metastases in my liver. No symptoms until I had a clinching pain in my right side. Thought it was appendicitis!
Fast forward, I got a 2nd opinion then started Fulfurinox. 12 rounds. Everything shrunk and my markers came from 23k to 21. Did Y90 to my liver in September then 2 more rounds of fulfurinox without the ox. Markers went up.
December 7 pancreadectomy. Last check markers came down 50 points to 179. Next up a PET scan and another blood draw. One recommendation is to remove liver metastes next IF PET is good. Been through a lot in 13 months and pushing for that 5 year mark!!

Hello,
I had a distal pancreatectomy for an IMPN last July, and an adenocarcinoma was found at that time. I am stage 1b and have had 8 Folferinox treatments, with 4 to go. Definitely no picnic (neuropathy, nausea, fatigue and heartburn). Let me know if you have any specific questions or concerns about anything, and I will try to be helpful. Wishing you the best on your journey.

You have a great attitude. Keep it up.
I had the Whipple surgery at the end of June.
Two more chemo treatments to go. I have a CT scan this coming Thursday.

Diagnosed with adenocarcinoma in tail of pancreas stage 2A. My regimen is chemo followed by resection surgery then chemo again. Just started the chemo yesterday and feel I am doing ok so far. A lot of nausea and trouble swallowing anything cold or cool. I have been able to go out walking with my dog so we are both happy! I hope to be cancer free in about 8 months but not looking forward to the process. Research is overwhelming me and I get occasional anxiety. Hoping to connect with others experiencing this and commiserate. I am starting in good health and hope to be encouraged and encourage others!

Hi, not sure if this is helpful, but I will relay my experience, even though everyone is different. I had an MRI in 2021, after unexplained weight loss, that showed a 2cm IPMN cyst in the tail of my pancreas. The EUS came back negative. There was a little involvement with main duct. Decision was made to monitor again in a year. In 2022 the cyst was 2.1cm, but main duct around the cyst was noticably dilated. Even though the cyst had not grown considerably, the area around it was suspicious. Then I had a distal pancreatectomy, and an adenocarcinoma was found, but cleanly removed with no local spread. I am stage 1b pancreatic cancer and undergoing chemo. I think sometimes it's not always the size of the cyst, but conditions around the cyst and characteristics of the cyst that could determine action. I hope this is somewhat helpful.

I have a friend with a cyst and she gets regular monitoring scans. She's not at Mayo, but the center where she goes wants to monitor it. From what I have read, they are typically benign, but most centers will want to keep an eye on them to watch for any changes. You should talk to your doctor and ask them questions until you are comfortable with the answers. You can always seek a second opinion.

Hello,

I’ve posted before and just wanted to ‘check in’… it’s a comfort to talk to someone…

This coming Monday, since we are in Florida, I am going for my 3rd contrast MRI @ Jacksonville, Mayo (first 2 done in Rochester along with an EUS). They want to monitor as the 2nd MRI was inconclusive whether or not my cyst is growing or whether it was just the angle of the ‘slicing’ of the MRI picture.

My questions are: Is this a normal explanation and possible? How long do they ‘monitor’ a cyst? My CA count in October was ‘15’, previously it was ‘16’. I do not have any other symptoms, nor do I have dramatic weight loss.

I had a consultation with one of the surgeons who told me that where my cyst is located, there is an 85% chance it’s benign and that since I am a bit overweight (250 lbs / 5’9) the Whipple surgery would be risky. Said that even at Mayo Rochester the mortality rate is 1-2%. I am trying to lose weight to make my health condition easier, but my concern is when do they make the decision to remove my cyst or does it have to become cancerous first? (That scares me too).

Any thoughts or similar situations people can share are appreciated. Thanks .