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

RE: Whipple surgery and no chemo survivors

by Lisa5166 on Mon Nov 26, 2018 06:15 AM

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Hello baileyobrian,

I too had the whipple surgery of April 2017. Diagnosed at stage 2b. You mentioned your friend did the Gonzalez protocol and it helped him. I researched that protocols and have been seriously considering it. As I have a reoccurance this October.  I really dont want to do chemo again and would really consider an alternate treatment. Does your friend highly recommend dr. Isaac's and did he have ever do chemo? I just like to ask someone who actually tried this protocol. It sounds legit. 

Thank you,

Laila

RE: Whipple surgery and no chemo survivors

by Swannboro on Tue Nov 27, 2018 02:42 AM

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This is good news to me, as I had the Whipple in 2011 at age 69, no chemo.  I had a neoplasm in my pancreatic duct that had blocked it causing sever pancreatitis  sending me to the hospital on several occasians.  Finally after doing a CA19-9 I was diagnosed and sent to a surgical oncologist.  I went to Univ. of Cincinnati, had a wonderful surgeon, but a rough 12 days in ICU.   I recently read that the average life expectancy is 9 1/2 yrs.  That really bummed me out. like your wife, I have a good life, very active physically as well as socially. Take my little Creon before every meal, and watch the fat.  Reently celebrated my 77th birthday, but then again every day is a celebration to me.  

RE: Whipple surgery and no chemo survivors

by lynnef on Tue Nov 27, 2018 04:45 AM

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I have some questions re Creon. As I mentioned I do take it- 36K ea pill -3 each meal.  this last week feeling the best and most balanced for the first time consistently. What I am wondering is - is it due to managing the creon better?  or is it more all around healing?  and if I dont take creon will i get back all the misery you mentioned which i did experience ?  

I am in touch with a great well informed 'nutrition' person who is so strongly versed and owns a health store in Texas- he turned me onto a plant based enzyme that protease and amlase as i recall are 60K each and lipase 4800.  i like the idea of plant based but I do need to understand and learn more about the body and function- more than I ever wanted to know - and would like to curtail as much 'trial and error' as possible.  Any ideas????   I found other products like Serrapeptase to be very helpful - it also helps heal inside adhesions.  Any thoughts or knowledge???

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