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.

@lovingwifeterry

thank you Colleen, I can not find a second opinion on the Mayo clinic web site. only free phone consultations. MD Anderson does a second opinion for $700. and we might do that. They look at all the medical records and will talk to our doctor about treatments. Dos that sound right?? I don't mind paying just want to know if that is what you were thinking. Any other medical second opinions will be welcome. Thank you for you wonderful help!!

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Terry, to request a second opinion start by filling out the online form here: http://mayocl.in/1mtmR63

Once you fill out the form, a coordinator will contact you by phone to discuss your situation and ensure you get a second opinion with the right team.

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@ken240

I find that with each day removed from the treatment, my digestive system improves, but I take it slow, eating small portions throughout the day, and also 2 bottles of Boost between meals for protein and weight gain. Folferinox is very strong stuff, and it takes a while to build back strength to tolerate the next cycle. My oncologist gave me an extra week to recover in this cycle to make sure I am ok for the next round. I hope your dad feels better.

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Thank you, I worry because he is now nearing the end of his 1 week off of chemo and will get the folfirinox again in a few days. He still eats very little. So if he eats next to nothing on chemo week, then extremely little on the in between week, when can he replace the weight? Maybe he can get different anti nausea medications. Thanks again

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@mgr62

Gas can result from insufficient pancreatic enzymes. There is a medication called Creon that is prescribed to help with this.

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Thanks, I'll look into this.

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@colleenyoung

Terry, to request a second opinion start by filling out the online form here: http://mayocl.in/1mtmR63

Once you fill out the form, a coordinator will contact you by phone to discuss your situation and ensure you get a second opinion with the right team.

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Colleen, some angels do not have wings, you are one of them. A Big thank you for helping me navigate the world of medicine. I may not be the best qualified, but I so want to help my husband. Have a great week-end!

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Hi!
I’m Barbara. I was diagnosed in Nov 2021 with IPMN cysts all through the main pancreatic duct. I had total pancreatectomy on 11/11/21. At the time Dr said pre-cancerous but 3/27 lymph nodes were cancerous.
I started chemo in Jan 2022 after a PET scan showed cancer had metastasized to several small places on bottom of both lungs.
Chemo dropped my tumor markers and scans showed clear except for a suspicious place in the surgical bed.
I stopped chemo in April and was feeling good until about July when I had increased stomach pain. Dr went back and scrutinized scans and decided I needed to be back on chemo. I started back 4 weeks ago. Stomach pain is better but this week I saw Oncology Radiologist for possible treatments after chemo. After a lot of questions and finding out I was having mild early morning headaches and nausea she ordered MRI of brain. This showed up 3 lesions with one on frontal lobe a little larger and edema.
I am now taking a steroid for swelling and start radiation on my brain tomorrow for 10 days. I’m feeling anxious but thankful for Drs questions to find out so quick and be able to get right into treatment.

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My name is Phil, I'm 79 years old. Was diagnosed with Pancreatic Cancer in June of 2022.
Had whipple procedure end of June.
Have had 6 of 12 chemo treatments. Dr. Gave me a chemo break for one month to get stronger. I start back tomorrow.
Had severe fatigue and diarrhea.
Have had 2 CT's both were clear. CAC19 were down.

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@philv

My name is Phil, I'm 79 years old. Was diagnosed with Pancreatic Cancer in June of 2022.
Had whipple procedure end of June.
Have had 6 of 12 chemo treatments. Dr. Gave me a chemo break for one month to get stronger. I start back tomorrow.
Had severe fatigue and diarrhea.
Have had 2 CT's both were clear. CAC19 were down.

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That's 69 not 79, sorry

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My SO was diagnosed with Pan Can mid Sept 2022 and to date, has had 6 chemo treatments. According to the latest CT and PET scans, the Cancer has not shrunk, but has also not gotten larger or metastasized elsewhere. We are meeting with a surgeon (outside of Mayo) this week, to discuss the Whipple Procedure. He's been clinically staged at 1B.

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pp22,

Are you saying you are going to Mayo (Rochester) ... I'm not sure what "outside of Mayo," means?

There are at least two surgeons at Mayo who perform laparoscopic Whipple procedures. If you are close geographically to Mayo, have you contacted them?

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@pleasepray22

My SO was diagnosed with Pan Can mid Sept 2022 and to date, has had 6 chemo treatments. According to the latest CT and PET scans, the Cancer has not shrunk, but has also not gotten larger or metastasized elsewhere. We are meeting with a surgeon (outside of Mayo) this week, to discuss the Whipple Procedure. He's been clinically staged at 1B.

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I wish him well.i had the Whipple before any chemo.
I came through the Whipple with no problems. One week in hospital after surgery.
Best of luck.

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