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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.

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thecomfycouchcafe | @thecomfycouchcafe | Dec 27, 2024
In reply to @gamaryanne "@rotan50 I am also in atlanta area. Diagnosed stage IV in 2021 and still kicking! Good..." + (show)
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@rotan50
I am also in atlanta area. Diagnosed stage IV in 2021 and still kicking!
Good care with very experienced physicians is critical. I will DM you.

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Hi. I have a loved one dealing with stage IV liver tumor. Atlanta is also her treatment area. If you don't mind sharing your team and tips.

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Colleen Young, Connect Director | @colleenyoung | Dec 26, 2024
In reply to @toesz "Hello All...yesterday, I had a second type of scan. This time, I had to drink some..." + (show)
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Hello All...yesterday, I had a second type of scan. This time, I had to drink some kind of liquid and the Doc's included contrast. Rather than a tube machine, this was a donut machine. I received a report on process already but it had too many medical terms for this simple mind to understand with any kind of clarity. I speak with the specialist again tomorrow for review of the findings and to make a decision on the next step of the staging.

I'm so happy that a majority of the medical professionals I've dealt with seem to have a calling for helping others. That's evident in how they've treated me through this process. Helpful, flexible, and understanding.

TK

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Hi @toesz, I thought I'd check in. What did you learn from the specialist after all the testing? How are you doing?

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marienewland | @mnewland99 | Dec 26, 2024
In reply to @kickcancer49 "Hi Marie! I was told to get Prochlorperazine for the nausea. I am going to have..." + (show)
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Hi Marie! I was told to get Prochlorperazine for the nausea. I am going to have surgery after chemo. I believe I only have 5 more treatments to go! I just hope I don’t have too many side effects!

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Sounds like you are doing well! Best wishes for your surgery and let us know how you are doing.

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kickcancer49 | @kickcancer49 | Dec 25, 2024

So sorry for your husbands’ situation! Wishing you both good results & happy holidays!

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suelannon | @suelannon | Dec 25, 2024
In reply to @colleenyoung "@suelannon, what treatment is being recommended for your husband next?" + (show)
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@suelannon, what treatment is being recommended for your husband next?

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Surgery was on July 15, 2024. He still has a Drain in him due to a Pancreatic Leak.
Oncologist has told us that they cannot do any treatment at all until the Drain comes out due to chance of infection. We go back again on January 5th to have the Drain checked and we have
Blood Work and CT Scan scheduled again for February 3rd and then we go from there depending on if the Drain has been removed. Doctor feels he is still too weak for Chemo.

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kickcancer49 | @kickcancer49 | Dec 24, 2024
In reply to @mnewland99 "Sorry to hear about your diagnosis, but happy to hear that you are diagnosed early. Does..." + (show)
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Sorry to hear about your diagnosis, but happy to hear that you are diagnosed early. Does your oncologist suggest surgery in the future for you?
Which chemo treatment are you on? For most of them you can expect nausea for which there are good antinausea drugs out there like Zofran. You can also expect a bit of constipation or the runs or a combination of both, but their effects may be mild as in my case.

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Hi Marie! I was told to get Prochlorperazine for the nausea. I am going to have surgery after chemo. I believe I only have 5 more treatments to go! I just hope I don’t have too many side effects!

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Colleen Young, Connect Director | @colleenyoung | Dec 23, 2024
In reply to @suelannon "Thanks for your response. We started out at University of Penn in Phila. After we were..." + (show)
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Thanks for your response. We started out at University of Penn in Phila. After we were told that they didn't think this was Cancer, we went to a Surgeon at Jefferson in Phila. so I feel like we are dealing with very reputable hospitals. Pre-Surgery his Ca19-9 results were as follows :
April 2024 639
June 2024 1720
Early July 2024 1886 ( All of this and we were still told they did not think it was Cancer )

July 2024 1887 ( This is when we went to Jefferson , Pre-surgery )
July 19,2024 403 ( Post Surgery - Unfortunately, they did not get clean Margins but did not know this until after the Pathology Report came back )

September 2024 632
October 2024 859

He has had no treatment at all due to the Drain.

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@suelannon, what treatment is being recommended for your husband next?

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gisele1976 | @gisele1976 | Dec 23, 2024
In reply to @colleenyoung "@gisele1976, I'd like to add my welcome. Did they discover that the spot on your husband's..." + (show)
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@gisele1976, I'd like to add my welcome. Did they discover that the spot on your husband's liver was metastatic spread of the pancreatic cancer? What treatment is being suggested? How are YOU doing?

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The spot on his liver was benign. He will have CAT scans and go back to chemo in about a month. I am taking it day by day. Thanks for asking.

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marienewland | @mnewland99 | Dec 22, 2024
In reply to @kickcancer49 "Hi! I was diagnosed with stage 1 pancreatic cancer about 2 months ago. Have had 2..." + (show)
Profile picture for kickcancer49 @kickcancer49

Hi! I was diagnosed with stage 1 pancreatic cancer about 2 months ago. Have had 2 chemo treatments since, with the last resulting in some of my hair falling out (didn’t expect it to happen so fast!). Went ahead got the rest of it shaved, covers ordered. Oh! I’m also disabled. Spina bifida, a neurological disability since birth, which has left me unable to walk. Level T12. The only other symptom I’ve had was being tired. Does anyone know what else I can expect, especially considering my disability? Thanks!

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Sorry to hear about your diagnosis, but happy to hear that you are diagnosed early. Does your oncologist suggest surgery in the future for you?
Which chemo treatment are you on? For most of them you can expect nausea for which there are good antinausea drugs out there like Zofran. You can also expect a bit of constipation or the runs or a combination of both, but their effects may be mild as in my case.

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1 reply
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kickcancer49 | @kickcancer49 | Dec 22, 2024

Hi! I was diagnosed with stage 1 pancreatic cancer about 2 months ago. Have had 2 chemo treatments since, with the last resulting in some of my hair falling out (didn’t expect it to happen so fast!). Went ahead got the rest of it shaved, covers ordered. Oh! I’m also disabled. Spina bifida, a neurological disability since birth, which has left me unable to walk. Level T12. The only other symptom I’ve had was being tired. Does anyone know what else I can expect, especially considering my disability? Thanks!

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