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?

@fassbinder
Took my guy to the Dr today to have staples removed and check on the fluid in the drain after Whipple two weeks ago. Its looking like a leak. They are sending it out to the lab. Otherwise, doing well. Praying for no fever…he has had pancreatitis before and a gall bladder removal that led to sepsis…thought we were over this!! Can also relate to not being there for him at the hospital…he was in 9 days. Very hard to be a caregiver for someone on Fentanyl epidural…the nurses were great!
Will be watching your progress…

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@marvinjsturing

@colleenyoung My wife brought me into ER Saturday night with nausea a and chills. The did several blood tests including a blood culture, gave me meds for the nausea and sent me home. Sunday after lunch the hospital called and said I had an E. coli blood infection. They told me I had to come back to be admitted the hospital. They ran numerous tests and can't find the source of the infection. They put in a tunnel cath this morning and are talking about giving me antibiotics daily for 2 weeks. If they can get everything arranged, I will be going home this afternoon

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@marvinjsturing Hello Marvin,

I'm sorry to hear about the E coil blood infection. Were you able to get home this afternoon? Praying that all goes well for you!

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@fassbinder

It's just not a smooth ride, is it?! I took my husband to our local ER Sunday night and he was transported to Mayo right away – blood loss and cultures indicated infections, which he also had while in the hospital three weeks ago for his Whipple procedure. Everything in recovery was going well until this episode. Eating fine after Whipple but it seemed tough to gain any weight and energy – maybe it was because the infections were still there, who knows! Hopefully he'll get back on track after this visit and not have another emergency. They are still not sure what caused the sudden bleeding but he'll remain in their care until they have some answers. Nothing appears to be leaking on scans. It sure is a drag not being there for him.

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@fassbinder Nothing goes the way I figure. When I got done with radiation, I figured I would be able to rest and relax at home and take some time to heal. No more trips to hospital for radiation. For the last few days, I did rest and relax. But it was in a hospital bed instead of at home. And now that I'm home, instead of going to the hospital for radiation treatments 5 days a week, I get to go to the hospital for antibiotics infusions 7 days a week.

I hope and pray things are back on track for your husband and that he can continue to recuperate from his Whipple.

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@marvinjsturing

@fassbinder Nothing goes the way I figure. When I got done with radiation, I figured I would be able to rest and relax at home and take some time to heal. No more trips to hospital for radiation. For the last few days, I did rest and relax. But it was in a hospital bed instead of at home. And now that I'm home, instead of going to the hospital for radiation treatments 5 days a week, I get to go to the hospital for antibiotics infusions 7 days a week.

I hope and pray things are back on track for your husband and that he can continue to recuperate from his Whipple.

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@marvinjsturing Hello Marvin,
I hope that your infection clears up soon!

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@mimou

Hello my mother aged 57 and she is very ill and she has a pancreas cancer how can you help her please answer me

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Welcome to MayoClinicConnect @mimou . Here is a group who focuses on pancreatic cancer. You should be able to find some help here
https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/
What does the doctor say would be a good plan for your mother?

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Hello my mother aged 57 and she is very ill and she has a pancreas cancer how can you help her please answer me

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@mimou

Hello my mother aged 57 and she is very ill and she has a pancreas cancer how can you help her please answer me

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Hi @mimou, I'm glad that you found Mayo Clinic Connect, a place where you can meet other patients with pancreatic cancer and their family members. I moved your message to the Pancreatic Cancer group (https://connect.mayoclinic.org/group/pancreatic-cancer/) where you can see messages from other members like @dakotarunner @marvinjsturing @amomynous @chemobile @julie2018 @beckyvolk @cindee60 @dianamiracle @colorafo19 @cathyras @drewgrebe @alkat @mpatel23 @kjrita @fassbinder and connect with them.

Mimou, when was your mom diagnosed? Has she started treatment?

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Not yet she didn't start treatment doctors said it dosen't matter medecines in this case medecines

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@mimou

Not yet she didn't start treatment doctors said it dosen't matter medecines in this case medecines

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Has she been told that there is no treatment available for her?

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@colleenyoung

Has she been told that there is no treatment available for her?

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No they didn't told her yet

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@marvinjsturing

@fassbinder Nothing goes the way I figure. When I got done with radiation, I figured I would be able to rest and relax at home and take some time to heal. No more trips to hospital for radiation. For the last few days, I did rest and relax. But it was in a hospital bed instead of at home. And now that I'm home, instead of going to the hospital for radiation treatments 5 days a week, I get to go to the hospital for antibiotics infusions 7 days a week.

I hope and pray things are back on track for your husband and that he can continue to recuperate from his Whipple.

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Hi Marvin,
I've been thinking about you. Have you completed your radiation treatments now? How are you feeling? I hope to hear from you with an update.

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I had tests done this morning at Mayo – Rochester to see how things went after radiation. I met with my oncologist this afternoon to talk about the results. The blood tests showed that my kidney function was down to 15% (for me, that's pretty normal). The blood tests also showed that CA 19-9 has gone down. The PET scan showed that the tumors on my pancreas and the surrounding lymph nodes have grown in size. It is possible that this is a result of the radiation. At this time, the plan is to monitor things by doing CA 19-9 tests monthly. If it remains steady or continues to go down, I will wait 3 months before getting another scan at Mayo. If it starts to increase, I will have to go back to Mayo sooner. If future scans show no change in the size of the tumors or if the tumors shrink,  I will receive no treatment. We will just continue to monitor things with quarterly PET scans. If the tumors start to grow, I will need to start chemo. Because of my kidney problems, if I receive chemo,  I will also have to have dialysis after each chemo treatment.

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Hi there, my hubby was diagnosed at the end of October and treatment began in Dec. Just completed rad/onc and had a month off. Boy, did we need that. Believing in healing

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My daughter was diagnosed in May with Stage IV Pancreatic Cancer. She's had two months of tests and visits and her chemo starts July 17, 2020. Hello to all. I'm glad that we found this group.

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@mountainmama45

My daughter was diagnosed in May with Stage IV Pancreatic Cancer. She's had two months of tests and visits and her chemo starts July 17, 2020. Hello to all. I'm glad that we found this group.

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Blessings to your daughter and your whole family.

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