1. < Pancreatic Cancer
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Pancreatic Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 3, 2019

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.

skiball | @skiball | Feb 10, 2023

Is there anyone out there who was recommended to have a prophylactic Whipple or who has chosen to monitor their IPMN? I am 8mm main duct dilated for the past almost 10 years but was only told I have had this for this long, this past June. If you are monitoring, how long have you done this and is it via MRI. Some doctors I have spoken to say they have a number of patients with IPMN that they follow. Has anyone had the Whipple without pancreatic cancer? Thank you!

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gardenlady1116 | @gardenlady1116 | Feb 10, 2023
In reply to @allanhamilton "Good Morning All! I was diagnosed with pancreatic adenocarcinoma in September 2022 - Stage 2b with..." + (show)
@allanhamilton

Good Morning All! I was diagnosed with pancreatic adenocarcinoma in September 2022 - Stage 2b with some apparent involvement of a couple of lymph nodes. The condition was discovered while being diagnosed for blood in my urine. A CT scan indicated a "spot" on the tail of my pancreas and I was immediately given the enzyme test which came back at just over 3000. The size and location of the lesion was confirmed by MRI. The size of the lesion was described as 3 x 5cm. I was referred to Emory University and Dr. Sarmiento who invented an endoscopic procedure for biopsy and eventual removal of the offending portion of the organ. The plan of action was to enter chemotherapy with the goal of reducing the lesion size for eventual removal. In November, I had 8 rounds of intense chemo with PALONOSETRON HCL, FLUOROURACIL, IRINOTECAN, and OXALIPLATIN. The results were not optimal...no reduction in lesion size but there was a small decrease in the enzyme assay. I've been moved to "palliative" care and have entered a second (6) infusion round of chemo with a completely different set of drugs - the names of which escape me at the moment!. I had new MRI imaging done in January and it's results indicated some small liver involvement. The small liver spot adjacent to the lesion became a problem when my surgeon indicated that I was no longer a candidate for the surgical procedure. As of today, I remain pain free and have never had any of the dire side effects of the chemo drugs. We are continuing treatments aided with lots of prayer that hopefully will further decrease my enzyme count.

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Thank you for sharing your story. Hope you continue to feel well.

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mikewdby | @mikewdby | Feb 10, 2023
In reply to @skiball "Is there anyone out there who was recommended to have a prophylactic Whipple or who has..." + (show)
@skiball

Is there anyone out there who was recommended to have a prophylactic Whipple or who has chosen to monitor their IPMN? I am 8mm main duct dilated for the past almost 10 years but was only told I have had this for this long, this past June. If you are monitoring, how long have you done this and is it via MRI. Some doctors I have spoken to say they have a number of patients with IPMN that they follow. Has anyone had the Whipple without pancreatic cancer? Thank you!

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Hello,…they have been monitoring my 4.0cm Cyst since June 2022. Recently did another contrast MRI @ Mayo and was still at same size. CA-19 was ‘16’. Went from monitoring every 3 months to every 6 months. Characteristics of cyst led Surgeons to state cysts similar to my kind are 85% benign (15% cancerous). Surgeon @ Mayo said complication risks to remove with Whipple was high due to where it’s located and I’m overweight. Thought was to NOT do surgery as he feels other treatments - now in clinical trials will be ready in 3-5 years. Praying in the trust and will of God to provide what He feels is best for me.

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mayoconnectuser1 | @mayoconnectuser1 | Feb 11, 2023

mikewdby,

OK - there is something clearly within your control - your weight - get working on it - SOON - work it every day, every meal - get your friends and family involved. Evaluate everything you eat - get a professional dietician to assist, if needed.

Are you diabetic? Other weight related issues?

If you are fully mobile, get walking and exercising! Preparing and being in the best shape possible relates to more positive outcomes!!

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richhsu | @richhsu | Feb 11, 2023

Hi Colleen,

Is there a mobile app where I can read and get notification on posts?

thank you so much,
Richard Hsu

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richhsu | @richhsu | Feb 11, 2023
In reply to @tammykl "@tammykl, hi , I was diagnosed Dec 2019, I've had chemo twice, radiation, ( stage 4..." + (show)
@tammykl

@tammykl, hi , I was diagnosed Dec 2019, I've had chemo twice, radiation, ( stage 4 ),now on a clinical trial, main tumor in the surgercal bed, 3 other spots in my abdomen. All stable as of January 2023, I have alot of back pain, tired, light headed, can't gain weight. Other than that, I'm doing pretty good.

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Hi Tammykl,

Can you please share which clinical trial did you participate?

thank you,
Richard Hsu

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1 reply
tammykl | @tammykl | Feb 11, 2023
In reply to @richhsu "Hi Tammykl, Can you please share which clinical trial did you participate? thank you, Richard Hsu" + (show)
@richhsu

Hi Tammykl,

Can you please share which clinical trial did you participate?

thank you,
Richard Hsu

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I'm on immunotherapy every 3 weeks, and Niraparib (2 pills )every night .

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gamaryanne | @gamaryanne | Feb 12, 2023

@tammykl
Hi Tammy, would you share where your immunotherapy is being prescribed? I did not know this was available at this point for Pcan. Even if it is a trial, it would be helpful to be aware of it
Thank you!!!!

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tammykl | @tammykl | Feb 12, 2023
In reply to @gamaryanne "@tammykl Hi Tammy, would you share where your immunotherapy is being prescribed? I did not know..." + (show)
@gamaryanne

@tammykl
Hi Tammy, would you share where your immunotherapy is being prescribed? I did not know this was available at this point for Pcan. Even if it is a trial, it would be helpful to be aware of it
Thank you!!!!

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I go to the Mayo Clinic in Florida, but there are other Mayo Clinic's around. In 2019 my oncologist said there was no immunity for PC, but in 2022, my only option was chemo again, Dr told me back in September (9-12 months is what I had) and didn't feel like I could do chemo again. So I called the nearest Mayo Clinic to me. What I'm doing is a research, so I'm pretty much a genie pig. The doors opened and that's what I've been doing since October, and they are learning new things all the time, we're praying this will work for me , and maybe something better will come up.

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1 reply
bethf | @bethf | Feb 12, 2023
In reply to @tammykl "I'm on immunotherapy every 3 weeks, and Niraparib (2 pills )every night ." + (show)
@tammykl

I'm on immunotherapy every 3 weeks, and Niraparib (2 pills )every night .

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How do you feel on this regimen? Do you have many side effects?
Beth

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