Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@martaisaac

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

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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

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@bethf

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

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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

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@bethf

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

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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

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@martaisaac

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.

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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

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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.

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@soupson

Diagnosed Feb 25 stage IV. With treatment 12-14 mos. Struggling with chemo trying find how much quality time I have without treatment. Can’t find the crystal ball
Bruce

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@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.

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@salterd

It is not Whipple surgery. I honestly don't know exactly what Dr. Truty calls the surgery except for the fact that both the stomach and pancreas are 100% removed.

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@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?

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@gamaryanne

Horror is an appropriate description of this diagnosis. I too had liver Mets and was diagnosed Stage iv. Once I had a second opinion I chose to be determined to be one of the 12% that make it past 5 years. I also began to think tactically-cleaning out closets and drawers, getting work done at my house—things I don’t want to leave behind for others to plow through. After all-we will all leave this Earth one day so why not have it done??
I prayed for a doctor that was uniquely involved in pancreas AND liver cancer. That person has moved me from Stage IV to currently NED. The internet will scare you-it is indeed an ugly silent killer. But there are many survivor stories too. And don’t give up doing things you love! Play golf, work part time, take on volunteer roles. Whatever. But don’t give in to becoming a victim. The world needs you to be out there! God bless you…

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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.

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@mary1957

Yes, he has already gotten the affects of cold things,hands and feet,bundled up like a Eskimo, he has five more treatments, then back to oncologist in may,hopefully they will consider surgery, his is on the tail 2 and a half cm. Keeping up with prayers and Hope
God Bless Everyone Fighting This Disease.

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Mine was on the tail also!

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@ken240

I just finished 12 rounds of Folferinox, as your husband is receiving. I am stage 1b after a distal pancreatectomy. It's a scary ride, but it helps to know there are others in the boat with you. I could not have gotten through without the support of my wife. The whole ordeal can be draining, so I tried to enjoy the days I felt ok. I hope your journey goes well. Let me know if you have any questions. Take care.

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He was told by oncologist to start chemo first to see if it shrinks a bit,he also has some arties involved, hopefully they shrink too so they can operate.
Been a roller coaster ride.
He was diagnosed in January, started getting a dull ache in his belly since December.
So glad I took him to the ER, Good luck to you!
And God Bless Us,Everyone!

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