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.

@colleenyoung

@sthakral, treatments can be harsh. Did your dad's doctors talk to your family about palliative care? Palliative can focuses on comfort and symptom management. Let me know if you want more information if you haven't heard of palliative care.

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Hi Colleen,
Palliative care is what the doctor recommended and what we are doing. We are just trying to keep him as comfortable as possible. But he’s getting weaker by the day and needs assistance with everything. I know he hates that as he is used to being self reliant and active.

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@sthakral

Hi
My 88 year old dad has been diagnosed with pancreatic cancer. He had jaundice and that’s what led to a series of tests that revealed the cancer. He’s been healthy and active all hi life but doctors recommendation now is to avoid any harsh treatment (because he’s too weak to take it) and just best manage his symptoms. He has extreme fatigue and needs assistance for everything and has swelling in his legs due to the jaundice. Any advice on symptom management techniques or drugs would be much appreciated

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@sthakral, treatments can be harsh. Did your dad's doctors talk to your family about palliative care? Palliative can focuses on comfort and symptom management. Let me know if you want more information if you haven't heard of palliative care.

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@kjrita

Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a five + year survivor that worked with Dr Truty at Mayo, Rochester. His plan for me included Folfirinox, and then Gemcitabine/Abraxane, which was followed by radiation and then, surgery. I had a pancreatectomy on 10/23/18. I am cancer free and am fully recovered. I now wear a OmniPod 5 insulin pump and Dexcom G6 CGM. They communicate with each other and it helps me avoid blood sugar lows. You could check out my blog which is more for emotional support for those walking through a cancer diagnosis to healing: RitaAnn.org/blog Peace to you, Rita Ann

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That’s wonderful news kjrita! I always like to hear about survivors! Which mutation did you have? ATM, KRAS12D?

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@kjrita

Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a five + year survivor that worked with Dr Truty at Mayo, Rochester. His plan for me included Folfirinox, and then Gemcitabine/Abraxane, which was followed by radiation and then, surgery. I had a pancreatectomy on 10/23/18. I am cancer free and am fully recovered. I now wear a OmniPod 5 insulin pump and Dexcom G6 CGM. They communicate with each other and it helps me avoid blood sugar lows. You could check out my blog which is more for emotional support for those walking through a cancer diagnosis to healing: RitaAnn.org/blog Peace to you, Rita Ann

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Thank you, Rita Ann. It’s good to know there are other paths to long term survival besides the simplistic plan offered to me.

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@steffi2

Retired MD here. Hello to all you brave souls. My journey began 3 days ago when I went to the emergency room with pain, abdominal mass and jaundice. The surgeon was sure it was pancreatic adenocarcinoma the first time I saw her. Biopsy yesterday via endoscopy preliminary results showed malignancy. Waiting for treatment plan. Hoping I will be eligible for Whipple although I know it will be awful.

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Hello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a five + year survivor that worked with Dr Truty at Mayo, Rochester. His plan for me included Folfirinox, and then Gemcitabine/Abraxane, which was followed by radiation and then, surgery. I had a pancreatectomy on 10/23/18. I am cancer free and am fully recovered. I now wear a OmniPod 5 insulin pump and Dexcom G6 CGM. They communicate with each other and it helps me avoid blood sugar lows. You could check out my blog which is more for emotional support for those walking through a cancer diagnosis to healing: RitaAnn.org/blog Peace to you, Rita Ann

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Thanks, Colleen. Borderline resectable. FOLFIRONOX. CT 2-3 months. Whipple if tumor lifts away from blood vessels.

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@steffi2

Retired MD here. Hello to all you brave souls. My journey began 3 days ago when I went to the emergency room with pain, abdominal mass and jaundice. The surgeon was sure it was pancreatic adenocarcinoma the first time I saw her. Biopsy yesterday via endoscopy preliminary results showed malignancy. Waiting for treatment plan. Hoping I will be eligible for Whipple although I know it will be awful.

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@steffi2, I add my welcome. What have you learned about your treatment plan? Any update?

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@stageivsurvivor

Warren,

I sent you a private message related to the inquiry on Berberine. Please check your connect.mayoclinic account in-box and let me know about the proposal by private message.
Steven

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Got it. Thank you. I'll reply to your private note shortly.

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@suelan55

Thank you for adding me to this group . I am 69 years old and diagnosed with stage 4 pancreatic cancer in October of last year . I have completed 10 treatments of forfirinox and will start chemo/ radiation next week for 5 weeks pending the whipple surgery in August .

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Welcome, @suelan55. Here are couple of discussions that might be relevant for you:
- Switching to chemoradiation (Xeloda + radiation): What to expect?
https://connect.mayoclinic.org/discussion/questions-about-chemo-radiation/
- Whipple procedure: What is the recovery like?
https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
Or maybe you have some tips to offer in this discussion:
- Anyone have light headedness from chemo (folfirinox)? https://connect.mayoclinic.org/discussion/light-headed-from-chemo/

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@wjk

@stageivsurvivor - What was your immediate, post Whipple chemo treatment 12 years ago? What was/is your monotherapy that followed?

Given your professional work history and as a current volunteer for patient advocacy, what are your thoughts on this 2022 journal article by Okuna, et. al., titled "Berberine Overcomes Gemcitabine-Associated Chemoresistance...." ? Any advice?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9611392/
I am a 75 year-old male diagnosed with Pancreatic Adenocarcinoma nearly 1 year ago with a 3.5 cm malignant tumor at the head of my pancreas. Pre-adjuvant treatment at the Mayo Clinic included Folfirinox (discontinued after 4 cycles due to allergic reaction to Oxaliplatin), switch to Gemcitabine/Abraxane for 2 months, followed by 3 weeks of radiation treatment with reduced dose Gemcitabine. Anticipated Whipple surgery in January of this year was postponed due to elevated CA19.9 levels, as well as in February for the same reason. Two months treatment with Folfiri followed in March and April, but CA19.9 levels continued to rise and several small lesions of less than 1cm appeared on the liver in late April imaging. Given liver mets and rising CA19.9 levels, Whipple surgery is no longer an option and prognosis is poor (life expectancy 4-6 months). (Note that tumor size per several CT scans and metabolic activity of tumor per several PET scans has been relatively constant during past 11 months.) I was half heartedly offered renewed treatment with Gemcitabine/Abraxane as the only chemo treatment, but it was ineffective in the past as CA19.9 levels rose while receiving a couple of cycles of it in September-October of last year. I am currently exploring alternative/integrative treatment options and my wife came across the article cited above, thus, my question above regarding the article and the possibility of renewing Gemcitabine chemo treatment with Berberine added.

Thanks in advance for any comments you may have.... and thanks also for your longstanding and ongoing engagement on Mayo Connect. Your informed commentary has been helpful and valued by me and others.

Of course, if anyone else cares to weigh in, please do so. Thank you all.

Warren in Alaska

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Warren,

I sent you a private message related to the inquiry on Berberine. Please check your connect.mayoclinic account in-box and let me know about the proposal by private message.
Steven

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