Pancreatic Cancer Group: Introduce yourself and connect with others

We will be going to Rochester, MN.

Thank you!

Debra

Terry:
This is Deb, wife of Tom, also 45 years. We have a very similar story. Tom was diagnosed in early March with what they said was a stage 2 tumor on the head of the pancreas. He endured 2 months of Folfirinox (which failed) and 4 months of Gem/Abraxine, which did lower the CA19-9 from 800 down to the 200s. We were so looking forward to the Whipple on Dec. 9 at Froedtert in Milwaukee. Devasted to receive a call from the OR that they found 3 tiny spots on the stomach lining, therefore, they abandoned the whipple. 5 hours of surgery to remove the gallbladder, reroute the bile duct etc. All they are suggesting now is more Gem/Abraxine. We are also looking for better alternatives! Going to speak with UW Carbone in Madison, WI and an inperson appt at Mayo in Rochester on the 17th of January.

Hello Deb. I am so sorry for yo both. We are getting ready to contact the Mayo clinic Or MD Anderson for a second opinion for treatment. They finally decided it is bile duct not pancreas cancer. Last chemo was 6- 8 weeks ago and he has had one medical problem after another. and very weak. Hopefully will be able to start Jan 14th with a new treatment. We shall see. Really looking forward to a second team looking at what treatment will be best for him. We live in a small town and feel we need the best to let us know what is going on and the best treatment for him. Wishing the best to both of you. Please let us know how you are doing with Tom's treatment.

In 2008 at age 43 with 2 young daughters, I felt silly going to a new Dr. while I felt Well to say I feel a lump under my ribs. I had Two back to back major surgeries. First the very large cyst was drained into my stomach. When I went back to have the staples removed I was told with my children in the room, that it was cancer. I then had a distal pancreatectomy splenectomy and small part of my stomach removed. After 1 year diabetic. After 14 years neuropathy, heart disease and take pancreatic enzymes. I was Blessed with time. I pray for the survivors out there and the warriors that were taken to soon.

Husband was just diagnosed with pancreatic cancer. Still recovering from the Whipple Procedure, (definitely not a walk in the park) Got his labs from his portal and they don't look good. Although his doc hasn't even seen them yet?!?!?!?! From what I understand they found cancer in 6 lymph nodes. Not good. His appointment with him is not until the 18th. I am sooooo heartbroken and scared shitless!!

anyone here live in TN with pancreatic cancer? Would love to talk............

Husband just diagnosed and recovering from the Whipple Procedure. (definitely not a walk in the park) Is there anyone on here going through this? I read his pathology report on his portal and it's not good. From what I understand he is in stage 3. Of course his doc hasn't even seen it yet!?!?!?!? why do they do that? His appointment isn't until the 18th so now I will be terrified until then. My husband is quite calm about it......

@howleegirl, it can be so terrifying to read pathology results before reviewing them together with the oncologist. I've moved your messages to the Pancreatic Cancer Support Group, specifically to this discussion:
- Pancreatic Cancer Group: Introduce yourself and connect with others: https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/

I did this so you can easily connect with other members and read their posts. In particular, I'm members like @debleigl @lovingwifeterry @susan2018 @julie2018 @sw54 @ticklefeather to bring them into this discussion. Like you, they have husbands who have been diagnosed with pancreatic cancer. They've been where you are now.

Please keep in mind that the pathology report is only one piece of the diagnostic interpretation. There are treatment options for cancer that has spread to the lymph nodes. Waiting until the 18th to speak with the oncologist will be hard. There's no denying that. But we're here and ready to listen and talk.

Thank you so much for your comments and help!! It is very much appreciated!!

I was diagnosed with stage 3 pancreatic cancer, with spread to 8 lymph nodes. I also had Whipple surgery with msv reconstruction in Feb 2021. I started chemo (folfirinox for 6 months - 12 treatments, one every 2 weeks) from April-Sept 2021. After this, bloodwork and CT scans every 3 months. I am still here, with a few differences in my life - I have to take Creon (a digestive enzyme) when I snack or eat, require insulin to control my blood sugars and have some neuropathy, primarily in my hands and feet. I will admit none of this has been a piece of cake, but in my opinion is a small price to pay to still be here with my family. We lost my mother-in-law to pancreatic cancer in 2000 within 4 months of diagnosis, but she was not eligible for surgery and refused treatment. Needless to say, when I was diagnosed my family panicked. I think this has been tougher in my family because they can only watch and try to help. I felt like I was fighting the whole time I was going through surgery, recovery, and chemo. I had physical struggles then. The mental struggle became more real when that was all done - now what? Wait and see what each scan shows? Is the cancer back? Has it spread somewhere else? I had to work hard to turn the scans into a positive proactive thing - we will catch things early enough to resume treatment. I still get some anxiety between scan and results, but I try to only think positively. At this point, it has been 2 yrs since my diagnosis, I have regained about 15 pounds, generally feel ok, but my tumour markers have been climbing. Scans show nothing yet. Dr has been very cautious with any potential issue - I have had one biopsy (negative) and am scheduled for more testing this week. Hopefully it too is good. Your husband can handle whatever comes - he needs you to stay strong for him - try to think positive thoughts, be supportive, let him rest if he is tired, etc. You can do this! Best wishes to you both.