1. < Pancreatic Cancer

Pancreatic Cancer Recurrence after Whipple

Posted by joannc63 @joannc63, Feb 18, 2023

Hello. I had the Whipple surgery on 6/30/2020 for stage 3 Pancreatic cancer. I found out on 2/17/23 via CT scans that it is back in the pancreatitis bed and a noldule in my liver. I see my oncologist in 2 days to go over starting chemo again. I have back pain and abdominal pain from the recurrence. Has anyone had luck with chemo when the cancer returns? I hope the oncologist can get the tumor to shrink. I guess I am just looking for hope maybe this can get under control. Thank you.

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upstairs17 | @upstairs17 | May 8, 2023
In reply to @colleenyoung "@upstairs17, that must be hard news to swallow. I think you are wise to learn about..." + (show)
@colleenyoung

@upstairs17, that must be hard news to swallow. I think you are wise to learn about the side effects of treatment and weigh what is meaningful for you between quality and quantity of life. Keep in mind that sometimes treatments like radition can be used to help manage pain as a palliative treatment. The goal of treatment can be to keep you comfortable and not necessarily to extend life.

Have you looked into palliative care or hospice care? Do you live alone?

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i know NOTHING yet But I do KNOW ONE THING and that is you guys have helped me with Both Knowledge and Kindness AND even if i do die I have what you have Given and I appreciate That! It makes you want to live and at least try and although that i not sure if i want to try different things At least im Glad to know that others are Trying to fight and Live !

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1 reply
ihatesnowinindiana | @ihatesnowinindiana | May 8, 2023
In reply to @upstairs17 "they told me a shadow has appeared after the Whipple surgery two years ago...They said when..." + (show)
@upstairs17

they told me a shadow has appeared after the Whipple surgery two years ago...They said when it returns that it is stage 4...they say that radiation or chemo will extend my life 1 to 2 years...I am alone and barely surveying, its been hell using the bathroom and waring dippers and trying to eat 6 meals a day,and the pain seem to be getting worse.in stomach, if you dont mind will you tell me the truth about radiation and chemo. i m tired of suffering and if these extension to longer life are more suffering then how long can one live without them . cause i realy dont care to live in my present state. Thanks for advice !

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As cliché as it is to say, you are NOT alone. We are ALL here with you, even though the silence in the room may feel lonesome. If there is one thing I can tell you, if you get the opinion from one doctor, FIND another opinion of one or 2 more doctors. If they all say the same thing, then at least you put enough feelers out there. There's a lot of strained healthcare systems out there, and time to time, doctors are gonna miss things. In the meantime, find something that brings you joy, even if it's something as small as watching the sunrise and sunset.

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Moderator
Colleen Young, Connect Director | @colleenyoung | May 8, 2023
In reply to @upstairs17 "they told me a shadow has appeared after the Whipple surgery two years ago...They said when..." + (show)
@upstairs17

they told me a shadow has appeared after the Whipple surgery two years ago...They said when it returns that it is stage 4...they say that radiation or chemo will extend my life 1 to 2 years...I am alone and barely surveying, its been hell using the bathroom and waring dippers and trying to eat 6 meals a day,and the pain seem to be getting worse.in stomach, if you dont mind will you tell me the truth about radiation and chemo. i m tired of suffering and if these extension to longer life are more suffering then how long can one live without them . cause i realy dont care to live in my present state. Thanks for advice !

Jump to this post

@upstairs17, that must be hard news to swallow. I think you are wise to learn about the side effects of treatment and weigh what is meaningful for you between quality and quantity of life. Keep in mind that sometimes treatments like radition can be used to help manage pain as a palliative treatment. The goal of treatment can be to keep you comfortable and not necessarily to extend life.

Have you looked into palliative care or hospice care? Do you live alone?

REPLY
2 replies
upstairs17 | @upstairs17 | May 8, 2023

they told me a shadow has appeared after the Whipple surgery two years ago...They said when it returns that it is stage 4...they say that radiation or chemo will extend my life 1 to 2 years...I am alone and barely surveying, its been hell using the bathroom and waring dippers and trying to eat 6 meals a day,and the pain seem to be getting worse.in stomach, if you dont mind will you tell me the truth about radiation and chemo. i m tired of suffering and if these extension to longer life are more suffering then how long can one live without them . cause i realy dont care to live in my present state. Thanks for advice !

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3 replies
joannc63 | @joannc63 | Apr 14, 2023

Hello,
The Nalirifox doesn't contain oxalplatin. I was originally on Folfirinox. I had neuropathy from it. So you may not nauropathy with this new regimen.
Best of luck to you and keep me posted.
JoAnn C.

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2 replies
starr500 | @starr500 | Apr 14, 2023
In reply to @joannc63 "Hi Colleen. Thank you for checking in. My oncologist is starting me on a Nalirifox -..." + (show)
@joannc63

Hi Colleen. Thank you for checking in. My oncologist is starting me on a Nalirifox - Onivyde 5-FU regimen.
The Treatment is with liposomal irinotecan (Onivyde) plus 5-fluorouracil (5-FU), combined with leucovorin, and normally oxaliplatin (NALIRIFOX). Except she won't be giving me oxaliplatin because of bad Neuropathy I got when I was on it previously.
She also did Gardant360 liquid biopsy blood work as well as sending my tumor specimens to them to be analyzed for the Gardant360 Next testing. Hopefully the tests will result in me being able to try a targeted therapy.

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Hi Joanne, I’m new to the group. Can you please share your treatment with Nalirifox. My oncologist wants to start me on this as well because of neuropathy from the past treatment as well.

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mamarina | @mamarina | Apr 6, 2023
In reply to @stageivsurvivor "Sorry for the delay in responding to your questions about qualifying gene mutation for targeted therapy..." + (show)
@stageivsurvivor

Sorry for the delay in responding to your questions about qualifying gene mutation for targeted therapy with a PARP inhibitor. The trial,I was in required study participants to have either a germline or somatic BRCA1, BRCA2 or PALB2 mutation, have failed at least one first-line standard of care treatment and be sensitive to a platin agent.

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Thank you

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stageivsurvivor | @stageivsurvivor | Apr 6, 2023
In reply to @mamarina "Stage Iv Did you need a certain mutation to qualify?" + (show)
@mamarina

Stage Iv
Did you need a certain mutation to qualify?

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Sorry for the delay in responding to your questions about qualifying gene mutation for targeted therapy with a PARP inhibitor. The trial,I was in required study participants to have either a germline or somatic BRCA1, BRCA2 or PALB2 mutation, have failed at least one first-line standard of care treatment and be sensitive to a platin agent.

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1 reply
leighs2011 | @leighs2011 | Apr 5, 2023
In reply to @joannc63 "Thank you. I will keep you posted. My oncologist decided to do a new round of..." + (show)
@joannc63

Thank you. I will keep you posted. My oncologist decided to do a new round of CT scans since my tumor markers were consistently going up since my last 2 visits and I also wasn't feeling well. I will see her tomorrow regarding the new therapy I will be starting this week.

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Good luck!

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tra418 | @tra418 | Apr 5, 2023

Thank you for sharing your story !!♥️🙏

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