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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.

Profile picture for Colleen Young, Connect Director
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 31, 2022
In reply to @vogonor "My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently..." + (show)
Profile picture for vogonor @vogonor

My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently had surgery during which part of my pancreas and two lymph nodes were removed. In January 2022, I started six months of chemotherapy, which I completed in June.

My doctor assured me that I was cancer free. Unfortunately, this is not true. Right now the tumor has grown to a size bigger than what it was before I had the surgery. Now the same doctor who ignored the upward trend of my tumor marker test results wants me to undergo another chemotherapy under his supervision. I am reluctant to continue my treatment with him, especially after he claimed the tumor marker numbers decreased during my treatment, which is not true. His total reliance on CT scan (which did not reveal the presence of the cancer prior to the surgery). On top of this, the doctor told me that my cancer cannot be cured and that I would die of the disease. The chemotherapy has resulted in my fingers and toes being numbed.

Am I wrong for not wanting to continue treatment with this doctor?

Jump to this post

Welcome @vogonor. Have you considered getting a second opinion?

REPLY
1 reply
Profile picture for philv
philv | @philv | Oct 31, 2022
In reply to @mamarina "Philv On weight loss not much. Ive talked with a few nutritionists but they really werent..." + (show)
Profile picture for mamarina @mamarina

Philv
On weight loss not much. Ive talked with a few nutritionists but they really werent much help except drink boost and ensure. I have 2 stents billiary and dueodenal so my food intake is somewhat limited
I take enzyme creon , i hired a nutritionist who evaluated my bloodwork and gave me various supplements
I add whey powder, canned coconut milk endures to smoothies. But I can only ingest small amts at a time so I only maybe drink 8 oz , 4 oz at a time. Im struggling to maintain my pitiful weight

Jump to this post

Thanks,
Told me the same drink ensure.

REPLY
Profile picture for vogonor
vogonor | @vogonor | Oct 31, 2022

My name is Vincent Ogonor. I was diagnosed of pancreatic cancer last November (2021). I subsequently had surgery during which part of my pancreas and two lymph nodes were removed. In January 2022, I started six months of chemotherapy, which I completed in June.

My doctor assured me that I was cancer free. Unfortunately, this is not true. Right now the tumor has grown to a size bigger than what it was before I had the surgery. Now the same doctor who ignored the upward trend of my tumor marker test results wants me to undergo another chemotherapy under his supervision. I am reluctant to continue my treatment with him, especially after he claimed the tumor marker numbers decreased during my treatment, which is not true. His total reliance on CT scan (which did not reveal the presence of the cancer prior to the surgery). On top of this, the doctor told me that my cancer cannot be cured and that I would die of the disease. The chemotherapy has resulted in my fingers and toes being numbed.

Am I wrong for not wanting to continue treatment with this doctor?

REPLY
3 replies
Profile picture for philv
philv | @philv | Oct 30, 2022
In reply to @mamarina "Philv On weight loss not much. Ive talked with a few nutritionists but they really werent..." + (show)
Profile picture for mamarina @mamarina

Philv
On weight loss not much. Ive talked with a few nutritionists but they really werent much help except drink boost and ensure. I have 2 stents billiary and dueodenal so my food intake is somewhat limited
I take enzyme creon , i hired a nutritionist who evaluated my bloodwork and gave me various supplements
I add whey powder, canned coconut milk endures to smoothies. But I can only ingest small amts at a time so I only maybe drink 8 oz , 4 oz at a time. Im struggling to maintain my pitiful weight

Jump to this post

Thanks for the tips. I need to start back on ensure

REPLY
Profile picture for mamarina
mamarina | @mamarina | Oct 30, 2022
In reply to @mamarina "Coleen my surgeon ( miami cancer institute ) was very discouraging actually as to a good..." + (show)
Profile picture for mamarina @mamarina

Coleen my surgeon ( miami cancer institute ) was very discouraging actually as to a good out come for me. And said they would do it if I was 100% on board with all that could go wrong and a painful recovery. He wouldnt be able to do it laparoscopically and said realistically it might gain me another year and half.. and id have to have surgery nov 3 before too much scar tissue from rads developed ..
as did the other opinion from johns hopkins ..
who said if I got radiation he wouldnt do surgery
Well I did the proton mri guided radiation the last week of Sept.
thank you all for input

Jump to this post

Not sure if i mentioned the end of Aug after believing I was borderline resectable which got me thru chemo ( which kicked my butt) my surgeons told me they couldn't do the surgery. That was devastating so got my wits about me got that johns hopkins second opinion , which wasnt favorable but he would try… only if i didnt do rads , then decided on the radiation

REPLY
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philv | @philv | Oct 30, 2022
In reply to @thebobk "@lanceh I, too, had issues with taste and feeling if fullness. Part of the problem is..." + (show)
Profile picture for thebobk @thebobk

@lanceh I, too, had issues with taste and feeling if fullness. Part of the problem is that I have a persistent "bellyache" and foods I can tolerate one day may taste bad a few days later. If I try to force food/drink then I feel worse, occasionally needing pain killers to mitigate chest/back pain. It's kind of like tossing darts at a moving target while blindfolded 😣

Jump to this post

Sorry you're having those problems. Luckily I'm not in any bad pain. I know you never feel like eating if you're in pain.
Stay strong !

REPLY
Profile picture for mamarina
mamarina | @mamarina | Oct 30, 2022
In reply to @colleenyoung "Welcome new members! @mamarina, that sounds like good news that your tumor shrunk enough to make..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome new members!

@mamarina, that sounds like good news that your tumor shrunk enough to make surgery a possibility again. Have you decided to go ahead with surgery?

@johnlair, good for you for persisting when you knew something wasn't right. You've heard the term scanxiety, right? It's a thing to be nervous before your scans. I think even getting them as frequently as quarterly, one never completely relaxes about an upcoming scan. Do you do something kind or enjoyable for yourself after the scan to associate it with something to look forward to?

@stageivsurvivor Thanks for spelling out FDR (First Degree Relative). Like @knolmom and @rexsan20, I was wondering. 🙂

@lanceh, you have had a rocky road. Thank goodness your original surgeon persisted. Hearing you've got stage 3 pancreatic cancer is a gut punch and one can't help but be concerned for the future and family - everything. You have come to the right place to connect with others, survivors like @stageivsurvivor @philv @thebobk @marvinjsturing @nhow234 @aprilg and many more.

@philv, what recommendations has your cancer team offered to help with the weight loss?

Jump to this post

Philv
On weight loss not much. Ive talked with a few nutritionists but they really werent much help except drink boost and ensure. I have 2 stents billiary and dueodenal so my food intake is somewhat limited
I take enzyme creon , i hired a nutritionist who evaluated my bloodwork and gave me various supplements
I add whey powder, canned coconut milk endures to smoothies. But I can only ingest small amts at a time so I only maybe drink 8 oz , 4 oz at a time. Im struggling to maintain my pitiful weight

REPLY
2 replies
Profile picture for mamarina
mamarina | @mamarina | Oct 30, 2022
In reply to @colleenyoung "Welcome new members! @mamarina, that sounds like good news that your tumor shrunk enough to make..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

Welcome new members!

@mamarina, that sounds like good news that your tumor shrunk enough to make surgery a possibility again. Have you decided to go ahead with surgery?

@johnlair, good for you for persisting when you knew something wasn't right. You've heard the term scanxiety, right? It's a thing to be nervous before your scans. I think even getting them as frequently as quarterly, one never completely relaxes about an upcoming scan. Do you do something kind or enjoyable for yourself after the scan to associate it with something to look forward to?

@stageivsurvivor Thanks for spelling out FDR (First Degree Relative). Like @knolmom and @rexsan20, I was wondering. 🙂

@lanceh, you have had a rocky road. Thank goodness your original surgeon persisted. Hearing you've got stage 3 pancreatic cancer is a gut punch and one can't help but be concerned for the future and family - everything. You have come to the right place to connect with others, survivors like @stageivsurvivor @philv @thebobk @marvinjsturing @nhow234 @aprilg and many more.

@philv, what recommendations has your cancer team offered to help with the weight loss?

Jump to this post

Coleen my surgeon ( miami cancer institute ) was very discouraging actually as to a good out come for me. And said they would do it if I was 100% on board with all that could go wrong and a painful recovery. He wouldnt be able to do it laparoscopically and said realistically it might gain me another year and half.. and id have to have surgery nov 3 before too much scar tissue from rads developed ..
as did the other opinion from johns hopkins ..
who said if I got radiation he wouldnt do surgery
Well I did the proton mri guided radiation the last week of Sept.
thank you all for input

REPLY
1 reply
Profile picture for thebobk
thebobk | @thebobk | Oct 30, 2022
In reply to @philv "For my weight loss Just try and eat and follow nutritional guidelines. Fooddoes not tSte good..." + (show)
Profile picture for philv @philv

For my weight loss
Just try and eat and follow nutritional guidelines.
Fooddoes not tSte good to me and a get full quickly.

Jump to this post

@lanceh I, too, had issues with taste and feeling if fullness. Part of the problem is that I have a persistent "bellyache" and foods I can tolerate one day may taste bad a few days later. If I try to force food/drink then I feel worse, occasionally needing pain killers to mitigate chest/back pain. It's kind of like tossing darts at a moving target while blindfolded 😣

REPLY
1 reply
Profile picture for philv
philv | @philv | Oct 30, 2022
In reply to @thebobk "@lanceh For what it's worth I wrote a book about my experiences during the first 6..." + (show)
Profile picture for thebobk @thebobk

@lanceh For what it's worth I wrote a book about my experiences during the first 6 of 12 infusion sessions. The book includes both "technical" explanations and some "meditations" I had.

The explanations include cancer vs pancreatic cancer, common procedures, glossary of terms, and my own journey during therapy.

The meditations include how I've been "dealing with" my therapy and prognosis so I don't miss the good days by fretting about my situation or speculating on the future - https://www.amazon.com/One-Path-Among-Many-experiences/dp/B0BB665CHZ

I also set up a website to keep family informed that is open to the public - https://www.caringbridge.org/visit/robertkoshinskie

Perhaps you'll find something useful in the book or site.

Best,

Jump to this post

For my weight loss
Just try and eat and follow nutritional guidelines.
Fooddoes not tSte good to me and a get full quickly.

REPLY
1 reply
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