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 | Dec 1, 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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@lovingwifeterry, I add my welcome and would underline the caring response you got from @mayoconnectuser1. Have you considered getting a second opinion at MD Anderson or Mayo Clinic?

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1 reply
lovingwifeterry | @lovingwifeterry | Dec 1, 2022
In reply to @mayoconnectuser1 "lovingwifeterry, I think what you're feeling is local medical teams providing the normal standards of care..." + (show)
@mayoconnectuser1

lovingwifeterry,

I think what you're feeling is local medical teams providing the normal standards of care approach, combined with significant statistical knowledge concerning the daunting and horrible effects of pancreatic cancer.

I believe these medical professionals are as traumatized as you are by this disease.

Once metastasis occurs outside the pancreas and perhaps formal restaging to Stage IV occurs, they know there is little to be done except, in many cases, return to chemo to buy a little bit more time.

What does his CA 19-9 trend indicate?

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it had been as high but at time of surgery around 200. He is going for scans and blood work tomorrow before we start back on chemo.

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mayoconnectuser1 | @mayoconnectuser1 | Dec 1, 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.

Jump to this post

lovingwifeterry,

I think what you're feeling is local medical teams providing the normal standards of care approach, combined with significant statistical knowledge concerning the daunting and horrible effects of pancreatic cancer.

I believe these medical professionals are as traumatized as you are by this disease.

Once metastasis occurs outside the pancreas and perhaps formal restaging to Stage IV occurs, they know there is little to be done except, in many cases, return to chemo to buy a little bit more time.

What does his CA 19-9 trend indicate?

REPLY
1 reply
sprinter345 | @sprinter345 | Dec 1, 2022
In reply to @stephenkogler "Hello Everyone, My first day here. As you know, it’s a crazy few weeks after being..." + (show)
@stephenkogler

Hello Everyone,
My first day here. As you know, it’s a crazy few weeks after being diagnosed (10/27/2022). First infusion yesterday and working on an at-home pump for a few days. Staying positive and trying to stay in the moment. Love to all. Below is a picture of me and my mother. She just turned 93 this week.

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I think the first weeks are the hardest- to get used to all the management of side effects and the reality of your diagnosis. That smile will help a lot ! Good attitude! God Bless

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sofee2022 | @sofee2022 | Nov 30, 2022

I'm hoping by finding this website it will help me to learn more about the cyst I have on my pancreas and liver. Any info would be much appreciated.

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1 reply
lovingwifeterry | @lovingwifeterry | Nov 30, 2022

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.

REPLY
3 replies
mgr62 | @mgr62 | Nov 30, 2022
In reply to @jessieleigh "Thank you for responding. I asked the RN if the bloating could be ascites and she..." + (show)
@jessieleigh

Thank you for responding. I asked the RN if the bloating could be ascites and she said that he has gas, not ascites, and that this is a common side effect of his chemo. She said for him to move around and eat more frequently. Have you heard or read anything supporting this? He sees the oncologist this week, I plan to ask her then.

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

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1 reply
ken240 | @ken240 | Nov 30, 2022
In reply to @jessieleigh "Thank you for sharing that. My dad got his chemo 1 week ago. Hopefully he will..." + (show)
@jessieleigh

Thank you for sharing that. My dad got his chemo 1 week ago. Hopefully he will begin to feel better soon. I will also ask his doctor if he can try beano. How are you feeling now?

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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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1 reply
jessieleigh | @jessieleigh | Nov 30, 2022

Thank you for sharing that. My dad got his chemo 1 week ago. Hopefully he will begin to feel better soon. I will also ask his doctor if he can try beano. How are you feeling now?

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1 reply
ken240 | @ken240 | Nov 29, 2022
In reply to @jessieleigh "Thank you for responding. I asked the RN if the bloating could be ascites and she..." + (show)
@jessieleigh

Thank you for responding. I asked the RN if the bloating could be ascites and she said that he has gas, not ascites, and that this is a common side effect of his chemo. She said for him to move around and eat more frequently. Have you heard or read anything supporting this? He sees the oncologist this week, I plan to ask her then.

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I have had five Folferinox treatments to date for my stage 1 pancreatic cancer. Usually, for several days after treatment, I have digestive issues like heartburn, GERD, and bloating. It is a common side effect from what I understand from my oncologist. I take Omeprazole and Pepcid, plus OTC antacids like Tums and Gaviscon, and also Beano. Around halfway in the two-week cycle, my system recovers somewhat, but I eat small portions of food several times a day. I have found, in my case, the fatigue can linger as not having the endurance for moderate activity. I hope this is somewhat helpful.

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