1. < Pancreatic Cancer

When to "stop"

Posted by whilted @whilted, Apr 8, 2023

Hi everyone,

After my mom came back from her consultation at Mayo in February with positive news, I felt like our family could finally have a little vacation from this disease. While my mom is going through radiation right now, she finishes in two weeks. After that, we're off to Europe. That's all I was thinking about when she started radiation and chemo pills.

Recently, however, we had an appointment with her oncologist (whom we have not seen in about a month), and that just reignited the worries and stress I had when we first started this journey. My mom's last radiation session is on April 24 and our trip is from May 29 to June 16. That would be well over a month without any treatment. But what else can we do? Additional chemo? But would additional chemo even be beneficial at this point? Both my mom and I have that mindset that there needs to be constant treatment for us to have the best possible outcome, but clearly treatment has to stop at some point. She is not experiencing any symptoms--no pain, no loss of appetite, etc. Am I insane for wanting my mom to do 1-2 sessions of Folfirinox before our trip so she has something in her body to kill any lingering cancer cells? I guess this all stems from the fact that my mom does not qualify for surgery, which is the only "cure."

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mamarina | @mamarina | Apr 13, 2023

Anyone had luck with gemcedibine?

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gardenlady1116 | @gardenlady1116 | Apr 13, 2023
In reply to @thawk32 "My Oncologist didn’t say anything about mutation. My first 11 chemo treatments had Oxiliaplatin in the..." + (show)
@thawk32

My Oncologist didn’t say anything about mutation. My first 11 chemo treatments had Oxiliaplatin in the mix with FU5. He then dropped Oxiliaplatin because of it was wearing on me and I got neuropathy in my feet. I didn’t get it in my hand. I have had a total of 41 treatments over two years. I have taken some breaks for vacations which is good for the body to recover. Just last week got good news from my MRI that said no mass was identified. My pancreas cancer is a rare form called Acinar.
Sending my prayers to you! 🙏🏻🙏🏻🙏🏻🙏🏻

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Thank you for sharing your story. I am amazed that you could have 41 sessions of chemo. I have had 9 and it seems like a lot to me. It does go OK for me.

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robee | @robee | Apr 16, 2023

I was diagnosed stage 4 and unresectable. Just finished 18th session of folfirinox minus oxilaplatin for the last 3.

Will schedule mRI guided radiation next even tho that means traveling 2 states away. May also change where I receive oncology as I feel I have to find all the different treatment options on my own. Frustrating.

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2 replies
gamaryanne | @gamaryanne | Apr 17, 2023
In reply to @robee "I was diagnosed stage 4 and unresectable. Just finished 18th session of folfirinox minus oxilaplatin for..." + (show)
@robee

I was diagnosed stage 4 and unresectable. Just finished 18th session of folfirinox minus oxilaplatin for the last 3.

Will schedule mRI guided radiation next even tho that means traveling 2 states away. May also change where I receive oncology as I feel I have to find all the different treatment options on my own. Frustrating.

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@robee
Where are you currently receiving chemo treatments? Where do you travel for MRIs or CT scans?

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1 reply
Turkey | @tomrennie | Apr 17, 2023
In reply to @robee "I was diagnosed stage 4 and unresectable. Just finished 18th session of folfirinox minus oxilaplatin for..." + (show)
@robee

I was diagnosed stage 4 and unresectable. Just finished 18th session of folfirinox minus oxilaplatin for the last 3.

Will schedule mRI guided radiation next even tho that means traveling 2 states away. May also change where I receive oncology as I feel I have to find all the different treatment options on my own. Frustrating.

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You should not be your own doctor. Please get a second opinion

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1 reply
robee | @robee | Apr 17, 2023
In reply to @gamaryanne "@robee Where are you currently receiving chemo treatments? Where do you travel for MRIs or CT..." + (show)
@gamaryanne

@robee
Where are you currently receiving chemo treatments? Where do you travel for MRIs or CT scans?

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I have been getting my chemo close to home at our local hospital. Like everyone else I heard “chemo is Chemo” and Folfirinox is the chemo of choice. Honestly at the beginning I had such a bad case of pancreatitis that I was too sick to ask any questions…..

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1 reply
robee | @robee | Apr 17, 2023
In reply to @tomrennie "You should not be your own doctor. Please get a second opinion" + (show)
@tomrennie

You should not be your own doctor. Please get a second opinion

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I have along the way anytime I feel I need to.

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Turkey | @tomrennie | Apr 17, 2023

Do you not trust your doctors?

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gamaryanne | @gamaryanne | Apr 17, 2023
In reply to @robee "I have been getting my chemo close to home at our local hospital. Like everyone else..." + (show)
@robee

I have been getting my chemo close to home at our local hospital. Like everyone else I heard “chemo is Chemo” and Folfirinox is the chemo of choice. Honestly at the beginning I had such a bad case of pancreatitis that I was too sick to ask any questions…..

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I understand. It’s also a very shocking diagnosis on top of already feeling bad.
What city/hospital will you travel to for your radiation treatment?

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1 reply
robee | @robee | Apr 17, 2023
In reply to @gamaryanne "I understand. It’s also a very shocking diagnosis on top of already feeling bad. What city/hospital..." + (show)
@gamaryanne

I understand. It’s also a very shocking diagnosis on top of already feeling bad.
What city/hospital will you travel to for your radiation treatment?

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NYC. MSK

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