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.

The question was for becklynne1960

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@bb21

did you have the mass removed or biopsied? If so what was your genetic results or the genome found? Most are KRAS but there are various mutations of that. Some are much more responsive to treatment than others. Ask your physician if he knows please. Quite helpful information.

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I did have a biopsy but haven't gotten to surgery yet. Hopefully August. I went through genetic testing with no genetic predisposition found. None of my doctors have mentioned KRAS, so I am not familiar with that. So far, thank the Lord, my tumor has responded to treatment.

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Hi. My husband was diagnosed with pancreatic cancer in March. he started Folfirinox April 1st. Initial thought was this treatment for 6 months with hope for surgery.... This week the CT showed no change in tumour size, CA 19 rising and a "sub centimeter low density area" in the liver. Plan now is Gemcitabine/abraxane and repeat CT in 2 months. He is 59yo and otherwise in good health. He did develop diabetes during this period and uses insulin when needed. I would really like a second opinion but unsure if it would be helpful... any thoughts or advice would be appreciated.

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@katiekos I think that you'll always find that second opinions are recommended when it comes to pancan. Pancan is a challenge and it takes knowledgeable, talented specialists to help you with proper guidance. If you are already using Mayo, great but contacting pancan.org or another National Cancer Center of excellence might identify additional options or confirm your current course of action. Good luck and bless you and your husband.

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Hi my name is Linda and my son had a Cat scan and they found a tumor in his pancreas 2.4 cm early April. He went to the ER with severe stomach pain in Jan and after a cat scan then they said he had a nodule on his right lobe and his lymph nodes were swollen around his stomach. They put him on s three month return for s follow up and that was when they discovered the tumor. Why would they put him on a three month wait list. When they did the second cat scan in April they found the tumor plus it had matasticized to the lining of his abdomen and spots in the lungs but not sure if it was cancer.
It took his PCP almost two weeks before he heard from a surgeon and after eating that long the surgeon said he needed a biopsy of the tumor. It took another two weeks before we could get a biopsy done. Came back with stage 2 in his biopsy. We made an appt at Cleveland Clinic that took another two weeks and by the time we got there they told us he had stage 4, inoperable and terminal and all they could offer was comfort and chemo to hopefully delay the cancer. Now his PCP finally gets him in with an oncologist after CC scheduled his port almost three weeks out abd he was getting a biopsy on his abdomen spots. So it’s been hurry up and wait when to meet his treatment should have been managed better and we could be seeing different results!

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@baboinwv

Hi my name is Linda and my son had a Cat scan and they found a tumor in his pancreas 2.4 cm early April. He went to the ER with severe stomach pain in Jan and after a cat scan then they said he had a nodule on his right lobe and his lymph nodes were swollen around his stomach. They put him on s three month return for s follow up and that was when they discovered the tumor. Why would they put him on a three month wait list. When they did the second cat scan in April they found the tumor plus it had matasticized to the lining of his abdomen and spots in the lungs but not sure if it was cancer.
It took his PCP almost two weeks before he heard from a surgeon and after eating that long the surgeon said he needed a biopsy of the tumor. It took another two weeks before we could get a biopsy done. Came back with stage 2 in his biopsy. We made an appt at Cleveland Clinic that took another two weeks and by the time we got there they told us he had stage 4, inoperable and terminal and all they could offer was comfort and chemo to hopefully delay the cancer. Now his PCP finally gets him in with an oncologist after CC scheduled his port almost three weeks out abd he was getting a biopsy on his abdomen spots. So it’s been hurry up and wait when to meet his treatment should have been managed better and we could be seeing different results!

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My husband was diagnosed with Stage 2b pancreatic cancer on 11/30. We felt like he had to wait to start treatments until 1/5/22 because of everyone ‘s holiday/Christmas vacations. We contacted Mayo Clinic in January and they got him in promptly. We wish we had called on 11/30. He did 4 months of Folfirinox and 3 weeks of chemo/radiation. He is scheduled for the Whipple 6/23/22. We have been so impressed with the Mayo Clinic! Prompt, organized, caring. He has struggled with his diabetes for years and even with insulin his blood sugar levels were in the 300-500 range. While he was there for his chemo/radiation treatment, he requested a consult with an endocrinologist. They got him in quickly and they adjusted his insulin and educated him better than any other diabetes educator and endocrinologist had done prior. Now his blood sugars are running 100-250. We highly recommend them to anyone facing serious health issues!

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Diagnosed 1/2022 Pancreatic Cancer. Stage 4. I'm scared...

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@iinvesnu

Diagnosed 1/2022 Pancreatic Cancer. Stage 4. I'm scared...

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Of course you are scared. I had my stage four diagnosis in March and I am also scared. But by getting a second opinion and researching clinical trials and reading as much as possible I have made it my job to understand and beat this cancer I have a much better attitude now. You have to be involved in your own health plan.

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My husband has been diagnosed w/ pancreatic cancer in the last couple of weeks and is going through staging now, and is getting a port installed for the anticipated chemo. It's weird to have plans for the summer not knowing if we'll be able to proceed, but he does not want to tell anyone about it. That may change after this staging is finished and he proceeds to whatever is next. We're in our mid-70s. Just taking things one day at a time. A bit tiring, though, dancing around the gorilla in the middle of our lives. 😳
I have already learned a lot from reading these posts and offer my thanks to those who share their experience so generously. 💕

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@myacim

My husband has been diagnosed w/ pancreatic cancer in the last couple of weeks and is going through staging now, and is getting a port installed for the anticipated chemo. It's weird to have plans for the summer not knowing if we'll be able to proceed, but he does not want to tell anyone about it. That may change after this staging is finished and he proceeds to whatever is next. We're in our mid-70s. Just taking things one day at a time. A bit tiring, though, dancing around the gorilla in the middle of our lives. 😳
I have already learned a lot from reading these posts and offer my thanks to those who share their experience so generously. 💕

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Good luck and hang in there. Yes , one day at a time,

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