Pancreatic Cancer Group: Introduce yourself and connect with others

Hi,
I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer in the Pancreas body along with small spots on my liver. I’m going on two years of chemo treatments. The cancer I have is rare and only consists in 1% of all pancreas cancers.
I have been of Chemo for almost two years and have tolerated the treatments very well. I’ve also had genetic testing done so I could provide with my family if this was hereditary so they could look out for this in their bodies. The good news was this wasn’t hereditary. I’ve been treated locally and have been to Dana Faber in Boston for a second opinion. Another good thing is my main lesion on the Pancreas has shrunk about 60% fro the original size and the small spot on liver also decreased.
I’m always wondering if there is any other treatments that I can do along with the chemo to shrink the cancer. Feel free to charm in or contact.

My sister is going through this mental struggle now that the physical struggle is slowly getting better. That is a hard one. Wondering did I go through this surgery, the diarrhea, nausea,the chemo just to find out on my next scan that it's back? Unfortunately I can only tell her to live in the moment. Not in the past or future. The power of the mind is incredible. Believe you are cured. And live life as much as possible. Easy for me to say so but it's true for any of us in this life. I am happy you are turning tour mind to positive thoughts and outcome. You made it through enjoy it. Bless you.

Thank you
I will give it my best shot.

Try not to let the fear control you. You can’t control what is going on in your body, but you can try to control how you handle things, your attitude, positivity etc. I have always been a realist so am well aware what the odds are, but I will do my best regardless. Try to focus on things you can control vs those you can’t. Wishing you all the best! You CAN do this!

Sort of in the same boat.
Diagnosed June 13th of 2022.
Had Whipple surgery Stage 3. Found six lymph nodes out of 56 cancerous. Had clear margins. My CA 19 is down to 105 from over 3,000.
Just finished 9 of 12 chemo treatments. Will have another CT scan in February.
Live in fear of tumor coming back or spread.

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.

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

@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.

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......

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