Pancreatic Cancer Group: Introduce yourself and connect with others

Mine was on the tail also!

It's been great to have this community to see the wide range of experiences and hear the wisdom of the group in how to copy. I also began cleaning out my house, thinking that I didn't want to leave that task to my family members. They are busy. It's been great. My latest accomplishment was a dog cage that had been sitting in my basement for 10 years. I felt so much better when I found someone who works with rescue dogs and really was interested in the cage. I like my house better with less stuff in in. There has been the satisfaction of giving others things that are useful to them and that they will enjoy as well as the knowledge that my survivors will not be burdened with trying to figure out what to do with everything.

I have learned something from every story that people are willing to share and thankful for the likes, helpful, and hugs I have been receiving from this community.

@salterd, in a total pancreatectomy, the entire pancreas is removed as well as a portion of the stomach, duodenum, gallbladder, and local lymph nodes. The spleen may be removed as well. It sounds like your husband will also have his stomach completely removed, called a gastrectomy.

You may be interested in joining these related discussions:
- Total Gastrectomy for stomach cancer: What can I expect? https://connect.mayoclinic.org/discussion/total-gastrectomy/
- Total Pancreatectomy https://connect.mayoclinic.org/discussion/total-pancreatectomy/
- Life after Pancreatectomy: How was your recovery? https://connect.mayoclinic.org/discussion/life-after-pancreatectomy/

You and your husband are in terrific hands with Dr. Ttuty. How is he doing with radiation and chemo? How are YOU doing?

@soupson, I agree with @gardenlady1116. It's hard to get answers like that. My dad chose to stop chemo. He too struggled with the side effects. While 6 months was predicted without treatment, we were grateful for getting 13, coincidently his lucky number.

I am Marta. I was diagnosed with pancreatic cancer on March 8, 2022. My body itched for days.
For exactly one year I had no symptoms at all. Then March 15 I started having abdominal symptoms.
I have elected not to have treatment since I underwent that for ovarian cancer and my age.
Very nice to meet all of you.

Hi Marta, thank you so much for introducing yourself. I am very interested in your decision not to get treatment. I had treatment and it was successful. I have been in remission for 10 months but I appear to be having a recurrence. I am very ambivalent about whether I would do any more chemotherapy, but I am interested in looking into an immunotherapy trial. I'm just very interested in what you have to say about your decision. Hope you decide to share more. Beth

Dear Beth,
Thank you for your reply.
I wrote a long comment but somehow I lost it. When I feel better, I will try again!
Marta

Dear Beth,
Thank you for your reply. I am sorry that you are suffering.
Twenty-seven years ago I underwent chemotherapy for ovarian cancer. I was not Stage 4 but they gave me the same protocol. I did not have a good experience with the chemo side-effects though that cancer has not returned. Now at age 74 I was told I had pancreatic cancer and the treatment would be chemo, radiation, Whipple surgery, and more chemo. I was told that would give me 20% chance of one more year of disease-free life. I didn’t think those odds were worth the side-effects of the treatment. Since the diagnosis I have had a wonderful year of symptom-free life with my husband.
Keep me posted as to what you decide.

All the best. Marta

Hi Marta,
Thanks so much for your reply. I find it very interesting and relevant to my own situation. Right now I am not suffering. I feel 100% great physically. I am able to do everything I enjoy (eat delicious food, camp, ride my horse, hike, play with my kitten, spend time with my husband, travel, etc.). I have no symptoms and a wonderful quality of life. I have increased tumor markers but no tumors on the scan. At some point, it is likely that I will develop a tumor or metastasis. Then I will be at a crossroads with the same considerations you have thought about. I value the quality of my life and it is more important to me than quantity. Right now I am interested in an immunotherapy trial, but I don't know if I would do chemo again. I'm so glad you have had this amazing 27 years and the wonderful year with your husband. Let's stay in touch.

I am curious however, given that you don't intend to do any treatment, what value you are seeking by joining this group?
Beth

Just to see if there are others in my situation. Thank you for replying. I just signed up with home hospice because my symptoms started coming. Can’t eat or drink anything. So thirsty but swish my mouth out with ice cold water.