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.

layla97 | @layla97 | Sep 20 3:39pm
In reply to @clschreiner "Henry, I am so glad that there has been no further growth in the tumor! I..." + (show)
@clschreiner

Henry,
I am so glad that there has been no further growth in the tumor! I would worry about being off chemo for that long. My husband passed away in July. He was stage 4 with metastasis to the liver and eventually the lungs, stomach, etc. He did 12 sessions of folfirinox initially along with a trial drug and then had a stroke, which caused him to be off chemo for approximately five weeks while he recuperated from that. During that time the cancer grew and spread a lot. I know everyone is different, but just wanted you to be aware since this cancer is so aggressive and hard to control. Best wishes to you for a long and successful journey ahead! < 3

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My sister met the same fate. She was diagnosed Stage 4 pancreatic cancer at the Mayo in Rochester. had standard of care Folfirinox, then oral gemcitabine. She enjoyed just a few months of being able to enjoy and taste food again. Because her platelets were too low they stopped everything. She also had a stroke a few weeks prior to getting up one morning and making it down the elevator to the parking lot with her partner, and suddenly passing out. She was taken to the MSK (where she was receiving her chemo) and passed away. This happened almost 12 months to the day of diagnosis this past July.
My only saving grace is that she died suddenly --- without having to endure days of pain and knowing that her death was near. We are devastated, of course. I feel for all of you here struggling with this most difficult diagnosis.

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mikewdby | @mikewdby | Sep 22 1:44pm
In reply to @hyennie "Hi! My name is Henry and I was diagnosed with Stage 4 pancreatic cancer the day..." + (show)
@hyennie

Hi! My name is Henry and I was diagnosed with Stage 4 pancreatic cancer the day after Thanksgiving last year. Surgery is not indicated for me due to the placement of the tumor and its expansion into connected blood vessels. So I underwent chemo for 11 sessions before I had to quit, and amazingly there was no further growth in the tumor. I'm currently on a "chemo holiday" for 3 months. After that period, I'll get another scan to see what options might be available.

I'm uncertain about the future and wonder how the disease will progress. I'm, fortunate to have a great group of family and friends that are a constant support.

Thank you for letting me join!

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Henry, my prayers and thoughts are with you. Where are you currently getting treated?

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hyennie | @hyennie | Sep 23 7:02am

Hi Mike - thanks for your prayers - I'm currently at Ochsner Baton Rouge - the Ochsner health system partners with MD Andersen in Houston. I've been really pleased with my care so far. Hope all is well!

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marcia | @marciak9 | Sep 24 9:04am
In reply to @hyennie "Hi! My name is Henry and I was diagnosed with Stage 4 pancreatic cancer the day..." + (show)
@hyennie

Hi! My name is Henry and I was diagnosed with Stage 4 pancreatic cancer the day after Thanksgiving last year. Surgery is not indicated for me due to the placement of the tumor and its expansion into connected blood vessels. So I underwent chemo for 11 sessions before I had to quit, and amazingly there was no further growth in the tumor. I'm currently on a "chemo holiday" for 3 months. After that period, I'll get another scan to see what options might be available.

I'm uncertain about the future and wonder how the disease will progress. I'm, fortunate to have a great group of family and friends that are a constant support.

Thank you for letting me join!

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Hi Henry,
That’s what I have. The tumor was wrapped around blood vessels. After 12 rounds of Folfirinox, I had a couple months off and then went into radiation. Found that it metastasized to my lungs about six months after radiation then I had the gem/abraxine chemo, but it was too harsh. So now I’m on a new drug called Lumakras.

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1 reply
hyennie | @hyennie | Sep 24 11:22am
In reply to @marciak9 "Hi Henry, That’s what I have. The tumor was wrapped around blood vessels. After 12 rounds..." + (show)
@marciak9

Hi Henry,
That’s what I have. The tumor was wrapped around blood vessels. After 12 rounds of Folfirinox, I had a couple months off and then went into radiation. Found that it metastasized to my lungs about six months after radiation then I had the gem/abraxine chemo, but it was too harsh. So now I’m on a new drug called Lumakras.

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wow - my team has told me that radiation is not an option for me. But depending upon the latest scan (this morning) we may try the other chemo regimen. I have not heard of Lumakras - will have to ask. Many prayers for your success!

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salgal110 | @salgal110 | Sep 24 12:48pm

Scans were in 7/24, EUS in 8/24 now starting chemoradiation therapy
tomorrow 9/25/24.
Sally

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marcia | @marciak9 | Sep 26 9:44am

I just had my blood work done and my CA 19–9 went up to 39. It doesn’t seem that high, but mine hasn’t really changed much over the last few months. But the doctor was concerned and moved my pet scan up to before her next appointment, October 15. Now I’m worried the lumakras isn’t working and I have to go back to chemo. Right now, the only chemo left for me is irinotican which I had an allergic reaction to. That means I would have to be in the hospital while they get me used to it.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 26 11:40am
In reply to @bonniestork "Hello, i had nodular melanoma and post surgery doctors suggested immunotherapy. A catscan found my main..." + (show)
@bonniestork

Hello, i had nodular melanoma and post surgery doctors suggested immunotherapy. A catscan found my main pancreas duct was enlarged too 1cm. I was diagnosed with IPMN and because of Opdivo infusions to keep melanoma fron returning, it was decided we would monitor the pancreas with scans. Last month I was diagnosed with early stage less than 1 cm invasive adenocarcinoma of the distal body of pancreas. In one week I will see a medical oncologist for four months of neoadjuvant chemotherapy, complete pancreatectomy, then two more months of chemotherapy.

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@bonniestork, have you started neodjuvant chemo now? Are you also taking immunotherapy for the melanoma or is that on hold for now?

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marcia | @marciak9 | Sep 28 9:38am
In reply to @marciak9 "I just had my blood work done and my CA 19–9 went up to 39. It..." + (show)
@marciak9

I just had my blood work done and my CA 19–9 went up to 39. It doesn’t seem that high, but mine hasn’t really changed much over the last few months. But the doctor was concerned and moved my pet scan up to before her next appointment, October 15. Now I’m worried the lumakras isn’t working and I have to go back to chemo. Right now, the only chemo left for me is irinotican which I had an allergic reaction to. That means I would have to be in the hospital while they get me used to it.

Jump to this post

The doctor says if the Lumakras doesn’t work, I’ll have to go back to chemo and the only one left for me is Irinotican. I had an allergic reaction the first time they tried it so I’d have to be hospitalized. Is that really the last treatment for pancreatic cancer?

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Carol | @cmkalmes | Oct 9 7:47pm

I was diagnosed September 6, 2024 with stage 3 pancreatic cancer. I will be starting chemo with folfirinox in a few weeks and am terrified. I dont have much of a support team. How much help will I need?

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