Pancreatic Cancer Group: Introduce yourself and connect with others

@tomrennie
Hi Tom,
I met with an/my oncologist yesterday with news that I was not expecting. He told me that I have stage IV pancreatic cancer. The cancer in the liver was caused by pancreatic cells. I believe that I will be starting chemo therapy on Tuesday, April 21 until October. Each therapy takes about 90 minutes. There are three weeks of chemo and then one week off, then it keeps repeating.
The cancer is incurable and also inoperable. I am not sure of radiation. I will ask my doctor.
Thank you mayo Clinic Support Group! You are very helpful
Exercise is good and I see a nutritionist on Monday. I also have a CT scan Monday to get a baseline. Right now I feel real good!

@yellie ty so much.

@suelannon I wish I could actually hug you. Just because sometimes it helps. I also was married young (15) & (16). 51 years April 12th. It's so hard to watch when the eating slows to practically nothing. Sleeping most the day. As a caregiver we just do. Our best. Sometimes they get ( snippy) my husband is dealing worthless . Not working & just being in the house isn't his style. I've asked his friends to call more often. Feel others don't quite understand what people go through with devastating illnesses. Wish you both comfort.

Hello, I was diagnosed with an adenoma at the head of the pancreas in Sept. of 2021 with SMV involvement. I received 6 rounds of Folfironex, and afterwards, the tumor was resectable. The Whipple was preformed April 26, 2022, with the tumor described as being stage 1 B, no margins, and no lymph nodes. All was well until April of 2025 when a shadow was seen on a CT that looked like a mass was forming in the operative bed, betweem the SMV and SMA. At that time, the CA 19-9 had not budged from the reading, as it first appeared post Whipple, as less than 2.09, where it has remained to this day. (At diagnosis, the CA 19-9 was 320.) I also received 6 more rounds of Folfironox post Whipple.
I have receive several pet scans and cts this past year along with 2 Signatera tests, both negative, and an endoscopy. The endoscopy yielded no new information due to 'artifacts'. The original shadow has enlarged during this past year and now the 'mass' appears to involve both the SMV and SMA. The situation has been described as 'difficult' and unresectable. It is not being considered for a biopsy because of the negative blood tests as well as being my being asymptomatic.
I will be receiving another ct test next week and have an oncologist meeting shortly thereafter.
Does anyone have any advice on what to ask my oncologist? He has said that he does not want to treat me.
I'm in San Diego County CA under the care of two qualified pancreatic specialist physicians using one of the better hospitals. My case is reviewed periodically by the 'tumor board'.
Thanks!

@casey1959 Thank you so much for your response. Hugs help tremendously ! I know that your husband just had surgery. It took 6 months for my husband to get over the Surgery. So many set backs. He had drains for 6 Months, had a staff infection , collapsed lung and pneumonia .
he never really got his strength back but we had a really good year. Took 2 great vacations and spent a lot of time with family and friends.
He was always big and strong so he hates to see me doing everything around the house but thankfully I can do it.
I hope your Husband recovers quickly from the Surgery and regains his strength back.
Did they find cancer in any of the Lymph Nodes ? Hopefully not .

@tomrennie it’s fairly new for pancreatic cancer. It was used for brain cancer and breast cancer first. It’s a device I’ll wear around my waist for like 12 hours a day. (Like I’ll use when sleeping or just hanging home. It stops cancer cells from spreading and kills only the cancer cells not the good cells. It’s not a cure per se but also will help with pain. And I’ll be doing maintance chemo pills a low dose since folinex messed me up. So who knows maybe the tumor will shrink over time.

@valerina30 That sounds promising. Please keep us posted on how it goes ok? What chemo pills will you be taking?

@lexaolexa1 Hi. I see that this is your first time commenting here. I want to welcome you to Mayo Connect. Before we discuss possible questions, how are you feeling? Who described the situation as difficult and unresectable? How much has the mass grown in the past year? Why did the oncologist say that he didn't want to treat you? I am somewhat confused. Thanks.

@casey1959 Hi. My husband was prescribed Creon post operative. He did need it initially and manufacturer coupon helped cover it with very little out of pocket cost and was able to get reimbursed for the first script which we had to pay for. He initially needed it post op due to weight loss/ stool frequency and diarrhea after his surgery but was able to reduce the amount needed with meals after a few weeks and stopped altogether around three months after his surgery. He has maintained his weight, tolerated foods and having more regular BM with out it. He saw his surgeon at regular intervals who helped with those changes. The Creon web site has a lot of helpful information.