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.

waltsocal | @waltsocal | Jan 10 11:02pm

In reply to @randyokey "Hi, my husband was diagnosed with stage 4 pancreatic cancer on December 18,2023. He also has..." + (show)

Just my experience - (after losing 40 pounds) I've been taking enzymes with every meal for quite some time now. The enzyme I use is CREON. It seems to help me a lot with the stomach and intestine pain. As most people will tell you - everyone has different experiences. Do you know which chemo he will be getting and are they starting at 100% dosage verses say 80% ?

Hope other people jump in to give you some more suggestions.

bceg1969 | @bceg1969 | Jan 11 8:21am

My husband was diagnosed in April 2023
Adenocarcinoma of the pancreas
has had surgery to bypass his duodenum since the tumor was pressing on it.
Liver bx since before radiation they saw something there on the cat scan..thankfully it was infection so now he has a stent
so he has had chemo and radiation for 9 months and the tumor is stable but wrapped around the mesentery artery so Dr Clancy at Brigham and women's says he can' have the Whipple ..too dangerous.The tumor is stable and hasn't spread so hopefully in one month after he gains some weight ,he's lost 40 lbs they will try a clinical trial.i know there are surgeons at Mayo Clinic that operate on its with vessel involvement..does anyone know about them?

Teresa, Volunteer Mentor | @hopeful33250 | Jan 11 9:37am

In reply to @bceg1969 "My husband was diagnosed in April 2023 Adenocarcinoma of the pancreas has had surgery to bypass..." + (show)

Hello @bceg1969 and welcome to Mayo Connect. I certainly understand you wanting to see the best surgeon for your husband's situation. If you want to find the best Mayo doctor at any of Mayo's three locations, I suggest you contact Mayo for an appointment and describe your husband's diagnosis and the type of surgeon that you are looking for. Here is a link for appointment information.
http://mayocl.in/1mtmR63.
Mayo has locations in Florida, Minnesota as well as Arizona.

I look forward to hearing from you again. Will you continue to post as you and your husband continue on this journey?

bceg1969 | @bceg1969 | Jan 11 9:41am

In reply to @hopeful33250 "Hello @bceg1969 and welcome to Mayo Connect. I certainly understand you wanting to see the best..." + (show)

I will definitely continue to post
I like being connected to others going through this journey

Teresa, Volunteer Mentor | @hopeful33250 | Jan 11 9:50am

In reply to @bceg1969 "I will definitely continue to post I like being connected to others going through this journey" + (show)

It is important to connect with others on the same path you are traveling, @bceg1969. I joined Connect when I was facing my third surgery for a rare form of cancer, neuroendocrine tumors. I was feeling very alone when I was told that I had another surgery ahead of me. Connect helped me so much. I hope it is as much of a help to you and your husband.

As you connect with other long-time survivors of pancreatic cancer, I'm sure you will feel surrounded by support. Some other members who post in this discussion regularly are @stageivsurvivor @markymarkfl @gardenlady1116 as well as others.

bceg1969 | @bceg1969 | Jan 11 10:11am

In reply to @hopeful33250 "It is important to connect with others on the same path you are traveling, @bceg1969. I..." + (show)

Thank you
I'll look at their posts
I think I have seen some of markymark posts
I can use all the support I can get!

markymarkfl | @markymarkfl | Jan 11 11:12am

In reply to @bceg1969 "Thank you I'll look at their posts I think I have seen some of markymark posts..." + (show)

@bceg1969 , I don't know whether to be honored or embarrassed! 😉 lol...

I don't know much about involvement with the mesenteric artery, since my Whipple was a good bit simpler.

Three huge names in the complicated surgery biz are Mark Truty at Mayo in MN, Christopher Wolfgang at NY Langone, and Matthew Katz at MD Anderson.

Plenty of other really good ones around, but you want someone at a pancreatic center of excellence to get the complete, specialized care team on your case for experienced recovery care in the hospital after surgery.

Lots of records and studies show how much better the outcomes are at high-volume centers. Counselors at pancan.org can help you find out how many Whipples a particular center or surgeon does per year. If a procedure other than Whipple is required, their number of Whipples __might__ still be a proxy reflective of related experience, but it would be ideal to find out how much experience they have with the procedure you'd actually be getting.

Wishing you both the best!

marienewland | @mnewland99 | Jan 11 6:53pm

In reply to @waltsocal "Morning, I've been following a lot of post for a while and figured I better do..." + (show)

@waltsocal

Morning,
I've been following a lot of post for a while and figured I better do this intro forum.

Pancreatic journey for 2023:

March - had been having what they thought was heartburn. After getting jaundice, pale BM and itching, my primary care immediately sent me to the hospital for an endoscopy. It confirmed PC. - stage 2B.

March 5 - May 19 - chemo - Fluorouracil, Oxaliplatin, Irinotecan.
June 29 - Whipple procedure laparoscopically. Removal was good with nothing in the margins. HOWEVER, 9 out of 22 lymph nodes showed signs of the cancer 🙁 15% survivability estimate.
July 1st - massive pain in the hospital - they found that they nicked my bowel during surgery and did not discover it for 2 days. I spent 6 weeks in the hospital with various infections and problems. My family didn't think I would make it home ever again.
August 14 - back home and bedridden.
August 19 - back to the hospital for a week. - The G/J tube was not in the right location so I was getting no food or fluids for 5 days. Extreme dehydration, new G/J tube.
August 28 - November - back home, trying to recover - very little movement.
Nov. 1st - tried chemo again - so sick, they sent me to the hospital again for 5 days 🙁
Lost over 40 pounds in 2023 !
January 2024 - I'm just waiting at this point. I've just stopped the feeding tube which was great to gain 10 pounds back and remain steady. The "waiting" part just sucks.
I called my oncologist and they will be doing blood work with CA19-9 early - along with a CT scan.
Have researched things endlessly. Seems like it will come back at some point.

QUESTION: If my CA19-9 and CT show things going back up, I know that clinical trials are probably my only hope. The oncologist did say that they could try gemcitibine chemo to "help" - not a cure. Realistically, if things turn worse - how much time can I really expect to have? I'm trying to get everything in order for my kids.

Jump to this post

Hello there,
My heart goes out to you as you've really had it rough! May I ask which medical group or hospital you were treated at? I live in Orange County, California and was treated at Hoag - not a Center of Excellence and I believe they really messed up my possibilities to be "cancer free" for at least a year or two instead of 4.5 months. Waiting is difficult, and we never know the consequences because there are different versions of the pancreatic mutation; there is a chance it could come back but for how long, no one knows. There are survivors so I hope you are one of the lucky ones! Be your best advocate and read as much as you can about the disease - this site is a very good source of information. I lost 50 lbs in the process, but I did gain 25 back and I'm thankful because it will help me fare well over the next few months. I think everyone should be prepared as far as wills, living trusts, etc. I'm actually in the process of selling my home so that I can ensure and see my children get to enjoy at least some of the money! My advice, be vigilant about your health, knowledegable about the disease, participate in these discussions as we all know exactly what you are going through, and how you feel, and enjoy life to the fullest!

Colleen Young, Connect Director | @colleenyoung | Jan 13 3:06pm

In reply to @julieacklin "Hello. I was diagnosed in September with Stage 4 Pancreatic Acinar Cell Carcinoma. I know it..." + (show)

Hi Julie, I'd like to add my welcome. How did your followup appointment go last week?

randyokey | @randyokey | Jan 13 7:09pm

In reply to @waltsocal "Just my experience - (after losing 40 pounds) I've been taking enzymes with every meal for..." + (show)

They call it FOLFIRINOX at 100% to start and see if he tolerates it. He also takes Creon. Thank you for your reply.

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