Pancreatic Cancer Group: Introduce yourself and connect with others

Anyone familiar with intraductal papillary mucinous cyst of pancreatic tail?
I just got diagnosed and will meet the surgeon in 10 days.
What are good questions to ask?
Can anyone share their experience?
Thank you.

Great- hope it improves his quality of life !

My husband's CT scan showed no change. He will have low dose chemo every two weeks. Good luck!

Hi, I'm Kathryn. I am 77 years old. I have recently been diagnosed with acinar cell carcinoma of the pancreas. They found this in a CT scan in October, 2024 when doing my quarterly scan for my stage 4 lung cancer (non small cell adenocarcinoma) for which I have been receiving immunotherapy (Yervoy, Opdivo) for the past 24 months. The lung cancer is in remission except for some swollen lymph nodes, some of which have now been identified as a pancreatic mass. After a biopsy in December, the tumor is about 4 cm. It is on the head of the pancreas and is possibly going to be removed with the Whipple method. I will be starting on a neoadjuvant therapy of abraxane and gemcitabine in March. I'm trying to keep a lot of plates spinning.

@birgittehass, I'm glad to hear that the latest CT scan showed no sign of visible metastases. However, you mention that the post surgical pathology report indicated that there was spread to the lymph node(s). Are you currently on treatment? How are you doing?

Minor correction to my previous post (3 up from this one):

It's the Bristol Meyers Squibb (BMS) patient financial assistance program for Abraxane. AbbVie is for Creon.

I do hope he gets on every two weeks. It is just so much better in our case to have more energy days. God Bless and fingers crossed for good scans and numbers!

My husband was on folfirinox first... every other week with pump for 6 months. Then reduced to a maintenance dose for a few months. But, CA19-9 started to go up, and new spots seen in the scans. Switched to G/A a few months ago... once/week for 3 weeks then one week off. Not as harsh for him as the folfirinox but still often could also be described like markymark as a fatigue ridden couch potato. He's at the end of his week off right now and has a little more energy.
He lost weight on folfirinox... those last few months of it were really rough on him. Regained the weight when on the maintenance dose. Now has put on more weight... I guess from me bugging him to eat, plus he's just not burning any calories when couch surfing.
Latest CA19-9 numbers down in the 300s which sounds high unless you compare them to the 39,000 + of 15 months ago. I'm hoping if numbers continue to come down, and scans look good that he can get to an every other week treatment schedule so he can regain something a little more similar to how he used to live. I don't think he will get back to backpacking and whitewater kayaking... but maybe some short skis or short hikes or kayaking on a lake would be nice. I'm dreaming at this point.... just hoping he can do something outdoors again at some point as it has been a frustrating journey for him. He walked the mile to get the mail with me today and that is something! He was a strong, healthy, very active 69 year old when this was diagnosed and I think that helped with the battles he's endured so far.

I'm surprised insurance would cover Abraxane but not Gemcitabine. Usually it's the other way around, as the Abraxane is a very expensive drug.

For my first year on GAC, I used the AbbVie patient financial assistance program to pay for the Abraxane. Insurance covered it for the second year, and just renewed their approval for another year.

@montyd , I've been very fortunate in the weight department. I had lost about 30 pounds before my original PDAC diagnosis, and gained it all back during 6 months of Folfirinox. I lost 15 pounds after my Whipple, and gained it all back within 4 months. After my recurrence, I maintained weight for the first 15 months of GAC and 4 months of a clinical trial. I then resumed GAC, but lost 20 pounds after my gastric outlet obstruction, then slowly regained 10 pounds on the 2000 calorie/day TPN regimen. After insertion of a stent, I was able to supplement my TPN with some oral food consumption, and the other 10 pounds came back in a flash (starting at Thanksgiving, which is also when I dropped the Cisplatin).

I attribute much of my weight gain to my wife being a really, really good cook!!! 🙂 Unfortunately though, I'm burning far fewer calories per day than I was before the obstruction, because the TPN and chronically low hemoglobin have turned me into a fatigue-ridden couch potato.

I would challenge the insurance decision it is widely known that Abraxane alone is not as effective. I’ve never heard of the two being denied !