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.

mayoconnectuser1 | @mayoconnectuser1 | Feb 4 9:23am
In reply to @marciak9 "Hello I have a tumor wrapped wrapped around arteries so no Whipple. I completed 12 rounds..." + (show)
@marciak9

Hello
I have a tumor wrapped wrapped around arteries so no Whipple. I completed 12 rounds of chemo and 15 radiation treatments last July. I’m on a recheck every 2-3 months.

I’ve been vomiting and have constipation. They did see some new spots on my lungs at the last visit. This waiting is driving me crazy.

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marcia,

Where are you being treated?

In many cases, stopping chemo based on a standards of care approach, might be the wrong thing to do ... could you provide more info?

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1 reply
ncteacher | @ncteacher | Feb 4 9:51am
In reply to @marciak9 "Hello I have a tumor wrapped wrapped around arteries so no Whipple. I completed 12 rounds..." + (show)
@marciak9

Hello
I have a tumor wrapped wrapped around arteries so no Whipple. I completed 12 rounds of chemo and 15 radiation treatments last July. I’m on a recheck every 2-3 months.

I’ve been vomiting and have constipation. They did see some new spots on my lungs at the last visit. This waiting is driving me crazy.

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I'm also considered inoperable due to blood vessel involvement. I've also been told I don't qualify for radiation due to flat lesions in my abdomen that the radiation wouldn't hit. But I'm still doing chemo--round 19 will be Tuesday. FWIW, at my appointment last Friday, my NP said she has several patients who are into their second year of chemo. My oncologist and I agree that I'll keep going on chemo until I decide to stop and/or the meds are less effective. I'm on modified Folfiri (we dropped oxaliplatin after round 8) at 60 percent of typical dose. Why did you decide to stop chemo? Can you restart? It's not the funnest thing (is that a word? ha!), but if it works and holds the cancer at bay, it might be worth resuming it.

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1 reply
marcia | @marciak9 | Feb 4 9:57am
In reply to @mayoconnectuser1 "marcia, Where are you being treated? In many cases, stopping chemo based on a standards of..." + (show)
@mayoconnectuser1

marcia,

Where are you being treated?

In many cases, stopping chemo based on a standards of care approach, might be the wrong thing to do ... could you provide more info?

Jump to this post

I’m being treated at Mayo in Rochester. The tumor was shrunken and considered dead. My CA19-9 is 10. They consider me no evidence of disease.

I also have sarcoidosis in my lungs that was under control. Now it might be triggered or the cancer is metastasizing. I see my pulmonary dr on Tuesday.

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marcia | @marciak9 | Feb 4 10:03am
In reply to @ncteacher "I'm also considered inoperable due to blood vessel involvement. I've also been told I don't qualify..." + (show)
@ncteacher

I'm also considered inoperable due to blood vessel involvement. I've also been told I don't qualify for radiation due to flat lesions in my abdomen that the radiation wouldn't hit. But I'm still doing chemo--round 19 will be Tuesday. FWIW, at my appointment last Friday, my NP said she has several patients who are into their second year of chemo. My oncologist and I agree that I'll keep going on chemo until I decide to stop and/or the meds are less effective. I'm on modified Folfiri (we dropped oxaliplatin after round 8) at 60 percent of typical dose. Why did you decide to stop chemo? Can you restart? It's not the funnest thing (is that a word? ha!), but if it works and holds the cancer at bay, it might be worth resuming it.

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The drs originally ordered 12 rounds of chemo. They’ve never spoken of continuing. They seem to think I’m in remission

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2 replies
mayoconnectuser1 | @mayoconnectuser1 | Feb 4 11:27am
In reply to @marciak9 "The drs originally ordered 12 rounds of chemo. They’ve never spoken of continuing. They seem to..." + (show)
@marciak9

The drs originally ordered 12 rounds of chemo. They’ve never spoken of continuing. They seem to think I’m in remission

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Hoping Stave IV Survivor will jump in to comment.

I am not a medical professional, but I continue to read of folks who stopped chemo, were declared in remission and then there was indication, again. I don't understand it, but many have discussed the sometimes advisability of continuing chemo. So confusing.

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199 | @199 | Feb 4 12:25pm
In reply to @waltsocal "Thank you for sending me your info. So sorry to hear about the spread to your..." + (show)
@waltsocal

Thank you for sending me your info.

So sorry to hear about the spread to your lungs ☹️. Hopefully your treatments can keep it at bay….

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Thank you, but the spread to my lungs occurred before my chemo treatments. My January CBC, CMP and CA19-9 were all good 🙂 so I am still on my "break" from chemo.

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gardenlady1116 | @gardenlady1116 | Feb 4 9:06pm
In reply to @mayoconnectuser1 "cpill, Is your husband being treated at a center of excellence for pancreatic cancer? This is..." + (show)
@mayoconnectuser1

cpill,

Is your husband being treated at a center of excellence for pancreatic cancer? This is the first question usually asked on this and other sites.

If he is not, I offer that you should continue chemo while transferring to a center of excellence ... a place like Mayo Rochester, MSKK, MD Anderson, etc. Please do not stop chemo until he has been evaluated by one of these types of centers. I also personally recommend that you relocate to one of those centers - live there until treatment is complete.

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Couldn't agree more

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 5 1:53pm
In reply to @rayb2024 "My name is Ray and was diagnosed with pancreatic cancer 1/19/2024. To say the least I’m..." + (show)
@rayb2024

My name is Ray and was diagnosed with pancreatic cancer 1/19/2024. To say the least I’m in panic mode and trying to keep it together. I’m 71 and in good shape however the mental aspect is devastating. Trying to stay positive but it’s extremely difficult. Today 1/26/2024 im at another hospital for a review of all the X-rays cat scans and MRI. 🙏🙏

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Hi @rayb2024, what did you learn at the second opinion appointment? What treatment is suggested for you? How are you doing?

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susie0023 | @susie0023 | Feb 5 2:04pm
In reply to @diana865 "Hi. I’m Diane and I was diagnosed with Inoperable Stage 3 Pancreatic Cancer in August 2023...." + (show)
@diana865

Hi. I’m Diane and I was diagnosed with Inoperable Stage 3 Pancreatic Cancer in August 2023. It took the a trip to the ER to get diagnosed after being sick for a year. I just had my 10th chemo treatment and will most likely have radiation following. My last scan showed the tumor almost shrank by half. I know I have a long battle ahead but trying to be positive.

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Hi Diane that is such good news 😊keep strong girl you have this!
My scenario is similar diagnosed in ER after 7 months of pain ! What is your chemo med regimen?

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1 reply
diana865 | @diana865 | Feb 5 5:33pm
In reply to @susie0023 "Hi Diane that is such good news 😊keep strong girl you have this! My scenario is..." + (show)
@susie0023

Hi Diane that is such good news 😊keep strong girl you have this!
My scenario is similar diagnosed in ER after 7 months of pain ! What is your chemo med regimen?

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Every other week for chemo. On #11. After another ct scan will most likely start radiation. Wishing you luck, keep strong.

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