1. < Pancreatic Cancer
Moderator

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.

Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7, 2023
In reply to @howleegirl "Husband just diagnosed and recovering from the Whipple Procedure. (definitely not a walk in the park)..." + (show)
@howleegirl

Husband just diagnosed and recovering from the Whipple Procedure. (definitely not a walk in the park) Is there anyone on here going through this? I read his pathology report on his portal and it's not good. From what I understand he is in stage 3. Of course his doc hasn't even seen it yet!?!?!?!? why do they do that? His appointment isn't until the 18th so now I will be terrified until then. My husband is quite calm about it......

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@howleegirl, it can be so terrifying to read pathology results before reviewing them together with the oncologist. I've moved your messages to the Pancreatic Cancer Support Group, specifically to this discussion:
- Pancreatic Cancer Group: Introduce yourself and connect with others: https://connect.mayoclinic.org/discussion/pancreatic-cancer-group-introduce-yourself-and-connect-with-others/

I did this so you can easily connect with other members and read their posts. In particular, I'm members like @debleigl @lovingwifeterry @susan2018 @julie2018 @sw54 @ticklefeather to bring them into this discussion. Like you, they have husbands who have been diagnosed with pancreatic cancer. They've been where you are now.

Please keep in mind that the pathology report is only one piece of the diagnostic interpretation. There are treatment options for cancer that has spread to the lymph nodes. Waiting until the 18th to speak with the oncologist will be hard. There's no denying that. But we're here and ready to listen and talk.

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2 replies
howleegirl | @howleegirl | Jan 7, 2023

Husband just diagnosed and recovering from the Whipple Procedure. (definitely not a walk in the park) Is there anyone on here going through this? I read his pathology report on his portal and it's not good. From what I understand he is in stage 3. Of course his doc hasn't even seen it yet!?!?!?!? why do they do that? His appointment isn't until the 18th so now I will be terrified until then. My husband is quite calm about it......

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1 reply
howleegirl | @howleegirl | Jan 7, 2023
In reply to @howleegirl "Husband was just diagnosed with pancreatic cancer. Still recovering from the Whipple Procedure, (definitely not a..." + (show)
@howleegirl

Husband was just diagnosed with pancreatic cancer. Still recovering from the Whipple Procedure, (definitely not a walk in the park) Got his labs from his portal and they don't look good. Although his doc hasn't even seen them yet?!?!?!?! From what I understand they found cancer in 6 lymph nodes. Not good. His appointment with him is not until the 18th. I am sooooo heartbroken and scared shitless!!

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anyone here live in TN with pancreatic cancer? Would love to talk............

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howleegirl | @howleegirl | Jan 7, 2023

Husband was just diagnosed with pancreatic cancer. Still recovering from the Whipple Procedure, (definitely not a walk in the park) Got his labs from his portal and they don't look good. Although his doc hasn't even seen them yet?!?!?!?! From what I understand they found cancer in 6 lymph nodes. Not good. His appointment with him is not until the 18th. I am sooooo heartbroken and scared shitless!!

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2 replies
CWRanch | @horsecamp | Jan 4, 2023

In 2008 at age 43 with 2 young daughters, I felt silly going to a new Dr. while I felt Well to say I feel a lump under my ribs. I had Two back to back major surgeries. First the very large cyst was drained into my stomach. When I went back to have the staples removed I was told with my children in the room, that it was cancer. I then had a distal pancreatectomy splenectomy and small part of my stomach removed. After 1 year diabetic. After 14 years neuropathy, heart disease and take pancreatic enzymes. I was Blessed with time. I pray for the survivors out there and the warriors that were taken to soon.

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lovingwifeterry | @lovingwifeterry | Jan 2, 2023
In reply to @debleigl "Terry: This is Deb, wife of Tom, also 45 years. We have a very similar story...." + (show)
@debleigl

Terry:
This is Deb, wife of Tom, also 45 years. We have a very similar story. Tom was diagnosed in early March with what they said was a stage 2 tumor on the head of the pancreas. He endured 2 months of Folfirinox (which failed) and 4 months of Gem/Abraxine, which did lower the CA19-9 from 800 down to the 200s. We were so looking forward to the Whipple on Dec. 9 at Froedtert in Milwaukee. Devasted to receive a call from the OR that they found 3 tiny spots on the stomach lining, therefore, they abandoned the whipple. 5 hours of surgery to remove the gallbladder, reroute the bile duct etc. All they are suggesting now is more Gem/Abraxine. We are also looking for better alternatives! Going to speak with UW Carbone in Madison, WI and an inperson appt at Mayo in Rochester on the 17th of January.

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Hello Deb. I am so sorry for yo both. We are getting ready to contact the Mayo clinic Or MD Anderson for a second opinion for treatment. They finally decided it is bile duct not pancreas cancer. Last chemo was 6- 8 weeks ago and he has had one medical problem after another. and very weak. Hopefully will be able to start Jan 14th with a new treatment. We shall see. Really looking forward to a second team looking at what treatment will be best for him. We live in a small town and feel we need the best to let us know what is going on and the best treatment for him. Wishing the best to both of you. Please let us know how you are doing with Tom's treatment.

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1 reply
debleigl | @debleigl | Dec 27, 2022
In reply to @lovingwifeterry "Hello, I am the wife of Bob, my husband of 45 years. He was first diagnosed..." + (show)
@lovingwifeterry

Hello, I am the wife of Bob, my husband of 45 years. He was first diagnosed April 2022 with (very early) bile duct cancer, later scans showed (a very small mass on the pancreatic head.) . no found spreading and was on the road to a Whipple procedure after 4 rounds of chemo on his way to a potential cure.. At surgery they found more cancer that had spread into the belly (little seeds) , They now feel that this is pancreatic stage 4 cancer. They didn't do the whipple , but did repair a large hernia. The only treatment recommended for him going forward is more chemo and feel he has about one year to live. We are seeking more options and have found a study in Portland, Oregon using T cells and will be talking with them soon. we also read about an oral medication (Texas oncology) Lynparza PARP inhibitor that delays progression and improves survival rates. We are not getting much support from our local oncology department for new helpful treatments or clinical trials. I am reaching out to all of you if you have tried other helpful treatments to extend life. Thank you all so much for any information you can share with us. We Wish all for you the best.

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Terry:
This is Deb, wife of Tom, also 45 years. We have a very similar story. Tom was diagnosed in early March with what they said was a stage 2 tumor on the head of the pancreas. He endured 2 months of Folfirinox (which failed) and 4 months of Gem/Abraxine, which did lower the CA19-9 from 800 down to the 200s. We were so looking forward to the Whipple on Dec. 9 at Froedtert in Milwaukee. Devasted to receive a call from the OR that they found 3 tiny spots on the stomach lining, therefore, they abandoned the whipple. 5 hours of surgery to remove the gallbladder, reroute the bile duct etc. All they are suggesting now is more Gem/Abraxine. We are also looking for better alternatives! Going to speak with UW Carbone in Madison, WI and an inperson appt at Mayo in Rochester on the 17th of January.

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1 reply
debleigl | @debleigl | Dec 27, 2022
In reply to @colleenyoung "hi @debleigl, oh I cannot imagine how disappointing it must’ve been to get the call from..." + (show)
@colleenyoung

hi @debleigl, oh I cannot imagine how disappointing it must’ve been to get the call from the operating room that they could not proceed with the Whipple surgery because cancer was found to have spread.

Here is the post from @lovingwifeterry, where she mentions having experienced a very similar (almost identical) situation. https://connect.mayoclinic.org/comment/779214/
As it turns out her husband has bile duct carcinoma.

Deb, I’m encouraged that you have an appointment at Mayo Clinic next week. There is hope, it’s just been re-shaped. Which Mayo Clinic location will you be going to? I can connect you with others who have been there.

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We will be going to Rochester, MN.

Thank you!

Debra

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bld | @bld | Dec 26, 2022
In reply to @colleenyoung "Hi Barbara, how are you doing? How is radiation going?" + (show)
@colleenyoung

Hi Barbara, how are you doing? How is radiation going?

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I’m doing ok thank you. I finished my 2 weeks radiation and the next week was back on chemo. I have very tender scalp with some burned places on temples and forehead.
Have been very weak and tired but try to keep moving as much as possible. I have PET scan on Jan 13th.
Hoping and praying for good results.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 26, 2022
In reply to @bld "Hi! I’m Barbara. I was diagnosed in Nov 2021 with IPMN cysts all through the main..." + (show)
@bld

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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Hi Barbara, how are you doing? How is radiation going?

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