Whipple surgery and no chemo survivors

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RE: Whipple surgery and no chemo survivors

by Turk183 on Thu Nov 08, 2018 06:15 PM

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I was diagnosed with ampullary cancer last year. It spread to my common bile duct and pancreatic duct. Instead of doing the Whipple, I had radio frequency ablation which did not work. Chemo would only slow the cancer, maybe as this cancer is rare, the oncologist didn't have enough case studies to be able to tell me the results. I tried chemo and radiation in February-March of this year and it made me sick, so I stopped. In June the cancer spread to my liver and my oncologist said I should try something, so I started chemo again. After two sessions I developed sepsis and was in the hospital for five days and on antibiotics for another two weeks. I feel fine, little pain now and then but I'm ok. I should point out that I have FAP disease and have battled this for 40 years. Had my colon taken out when I was 23 and have been checked yearly ever since. I had tumors removed over the course of the years in the duodenum and polyps all over. I was told in 2004 that no matter what I did to combat my disease, I would eventually get cancer. I've decided to just sit back, retire and live the rest of my life as comfortable as possible. I have no regrets as for the treatment I chose and for my wife and kids, I can say at least I tried.

RE: Whipple surgery and no chemo survivors

by Treasure on Thu Nov 08, 2018 06:32 PM

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Hi Richard, I'm very surprised your surgeon did not recommend chemo as a precautionary measure.usuall y if cancer is located elsewhere, this is usually the next route! This is a sneaky type of cancer and sometime floaters break off and form elsewhere. Scans sometimes don't pick them up till afew scans later. I would insist on this be investigated as ca19-9 safe zone is 0-34, anything over this certainly needs  investigated.Mine also was in 2 of the 18 lymphnodes they removed and my scan showed everything was clear. My ca19-9 numbers went up to 58 after scan and I insisted this be investigated and sure enough this beast was back again in another area. This type of cancer has a history of repeating itself in many people that have had pancreatic cancer. I did go on a very agressive chemo and without asking God to help me through this putrid time, I would not have been able to continue this journey. I know that I am only here today by the grace of God, because it's God that can do what no one else can do. Chemo is just a treatment that usually is temporary but with God in control, its everlasting. 

I pray that the God will inspire the oncologist to recommend the perfect treatment which will bring your partner through to victory.

Blessings as you continue this journey

Joy 

RE: Whipple surgery and no chemo survivors

by susanmac on Thu Nov 08, 2018 06:38 PM

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I asked the PA about creon at my appt.   I am 3 mos post surgery and on #4 of Folifirnox and she couldnt believe i wasn't on it.  She is an awesome PA...i like her better than my ONC-really on the ball.

So im starting them today.   I only weight 127 so im starting 1 with snacks and breakfast sincel i only have an egg....and 2 with meals...to start.

I will be very glad to see the gross foul smelling matter get better....its a downer after awhile.  THx for the info!!

RE: Whipple surgery and no chemo survivors

by RichardO on Thu Nov 08, 2018 07:17 PM

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Joy, thank you for your response. We have not seen the oncologist since the recent labs (only 3 days ago- I got the lab results from the patient portal). I am going to give him a few days to see if he calls. If he doesn’t, I will try to convince my partner that we need to not wait until his next scheduled appointment in February.

RE: Whipple surgery and no chemo survivors

by Treasure on Thu Nov 08, 2018 08:23 PM

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Yes, February is to long to wait if your partners numbers have not started to come down. Pancreatic cancer is a very aggressive cancer and altho there are other reasons why ca19-9 numbers may rise, they certainly don't rise this fast or this high all within a short time. 

Take care

Joy

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