1. < Pancreatic Cancer

Tumor can’t be removed: What are chances of survival now?

Posted by treyman1234 @treyman1234, Dec 9, 2023

My husband went to have a whipped surgery on the head of his pancreas. Images showed a 2 cm tumor but when they went in it was golf ball size and incased with arteries. He was bleeding too much and thought it was too dangerous to continue. What are his chances of survival now?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 15, 2023

@treyman1234, I wanted to check in. You got a boatload of practical and supportive information from members. Have you had a chance to digest it? Has the tumor board met or is that still coming up?

REPLY
rs12122 | @rs12122 | Dec 15, 2023
In reply to @colleenyoung "@rs12122, sorry you lost your reply. If I can help with tech support, please send me..." + (show)
@colleenyoung

@rs12122, sorry you lost your reply. If I can help with tech support, please send me an email using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

Also see helpful tips on using the site in the Help Center https://connect.mayoclinic.org/help-center/

Do you want to try your reply to @hopeful33250 again?

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I did resend it, thanks.

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pendesk8 | @pendesk8 | Dec 16, 2023
In reply to @marciak9 "My tumor is wrapped around arteries as well. My surgeon at the Mayo said it would..." + (show)
@marciak9

My tumor is wrapped around arteries as well. My surgeon at the Mayo said it would be a difficult surgery, but they could cut the artery. Remove pancreas, spleen and stomach and then reattach the artery. My esophagus would go straight into my intestines so I would have constant diarrhea And type two diabetes with injections. I’m 61 and I’m not strong enough for that kind of surgery so we did 12 rounds of chemo and 15 rounds of radiation and the tumor has shrunk and is showing as black or dead. It still may metastasize to other organs which will be treated with chemo. I don’t think I could tolerate chemo if I had had the surgery. I don’t have any pain now and I’m living a pretty normal life. I’ll just have to go in every 2 to 3 months for scans and bloodwork.

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do you mind telling me which chemo you had.

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1 reply
marcia | @marciak9 | Dec 16, 2023
In reply to @pendesk8 "do you mind telling me which chemo you had." + (show)
@pendesk8

do you mind telling me which chemo you had.

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I had Folfirinox. 12 treatments. I had an allergic reaction to Irinotican. My throat started to close up during my second treatment. They discontinued it. With each treatment they made adjustments to help me be more comfortable. I still have peripheral neuropathy in my fingers and feet which is very common and there isn’t a cure for it. The chemo deadens the nerves and they need to grow back. Mine doesn’t hurt but is uncomfortable. Like when your foot falls asleep. For me it’s like walking on rocks with your bare feet. My fingers feel like I have bandaids on them. It’s hard to pick things up. Thank goodness it went away in my mouth. Everything cold would feel like broken glass. I still can’t eat anything spicy. Even barbecue sauce feels like it’s burning my mouth. But I’m alive so it’s worth it!

REPLY
pendesk8 | @pendesk8 | Dec 16, 2023

I was on the folfirnox but it wasn't working.I am now on a clinical trial at NIH with a parp inhibitor.I'Ve had no cancer growth for 4 months now.I have a ATM gene mutation.The side effects are minimal.Mostly just get tired.So glad not to be sick for Christmas this year.I am 18 months into this.Have a great christmas.

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1 reply
ncteacher | @ncteacher | Dec 16, 2023
In reply to @pendesk8 "I was on the folfirnox but it wasn't working.I am now on a clinical trial at..." + (show)
@pendesk8

I was on the folfirnox but it wasn't working.I am now on a clinical trial at NIH with a parp inhibitor.I'Ve had no cancer growth for 4 months now.I have a ATM gene mutation.The side effects are minimal.Mostly just get tired.So glad not to be sick for Christmas this year.I am 18 months into this.Have a great christmas.

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@pendesk8 , could you please provide a bit more info on the trial you're in? Specifically, the name of the PARP inhibitor. Is NIH the only place running the study?

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2 replies
marcia | @marciak9 | Dec 16, 2023

Chances for survival are still good. No one really knows how long they have so enjoy each day. It’s a “present”.

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markymarkfl | @markymarkfl | Dec 16, 2023
In reply to @ncteacher "@pendesk8 , could you please provide a bit more info on the trial you're in? Specifically,..." + (show)
@ncteacher

@pendesk8 , could you please provide a bit more info on the trial you're in? Specifically, the name of the PARP inhibitor. Is NIH the only place running the study?

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@pendesk8 also is the PARP inhibitor being given in conjunction with other drugs/therapies, or entirely by itself? Inquiring ATM mutants want to know! 😉

Sincere thanks and best wishes.

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pendesk8 | @pendesk8 | Dec 17, 2023

Just by itself,which I don't understand.what hope is there to kill the cancer.Just trying to see how long I stay alive I suppose.

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1 reply
pendesk8 | @pendesk8 | Dec 17, 2023
In reply to @ncteacher "@pendesk8 , could you please provide a bit more info on the trial you're in? Specifically,..." + (show)
@ncteacher

@pendesk8 , could you please provide a bit more info on the trial you're in? Specifically, the name of the PARP inhibitor. Is NIH the only place running the study?

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The name of the drug is talazoparib.One pill a day.It was originally used for the brca gene mutation and they wanted to see if it would work on the ATM mutation.The original trial I wanted to get into was a drug that would fix my mutation and in turn kill the cancer.The trial has been held up due to some glitch.I am hoping they soon get it through.

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