Question about stage 3 bile duct cancer prognosis

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Question about stage 3 bile duct cancer prognosis

by Barnstable on Mon Mar 11, 2019 10:31 PM

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Hello all,

Am reaching out for some insights and the experience of others.  I have Stage 3 bile duct cancer; had to have the Whipple first; and of the 42 lymph nodes removed, 25% were positive, indicating metastatic disease.  Three months later, I've just completed (last week) my first round of chemo -- 5FU -- known as the mildest.  It was God awful. Ended up in the hospital for two days.  As my prognosis longer term is not terrific, I've elected not to continue with chemo, but to let the disease progress as it will.  I feel good; am eating well; have few impacts from the Whipple.  thus, I have a hard time understanding my oncologist's prediction that without chemo I'll be dead in 3-6 months. Seems to me, given my reaction to the chemo, that I'll have a far better quality of life (QOL) during whatever time I have left on this planet. Thus, I'm clear in my decision.  My family is workign their way through it.  I'm wondering if anyone on this board has had a similar experience.  Best and thank you. 

RE: Question about stage 3 bile duct cancer prognosis

by Treasure on Wed Mar 13, 2019 01:37 AM

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Hi Barnstaple, I had stage 4 pancreatic cancer, had the Whipple also. Mine was n the pancreas, bile duct, lymphnodes, and liver.. I can only tell you , this is an agressive cancer and when you first begin chemo, it's a very hard experience. I too ended up in hospital for one night,  they have different antinausea drugs to help you through this time, it's just to get the right one that suits you. It's important to eat before chemo! Stay away from suppliments as they may interfer with chemo. Ensure is an excellent source of nutrients to take . I can tell you for me, I also did not want to do this chemo and I knew I needed some mighty powerful help to get through this journey, so I asked God to get involved and help me through this , because i knew chemo was just a treatment, but with God it was a permanent recovery. . My brother had this cancer, did not do chemo and passed away within a few months.. it's going on 8 years and it's God that not only helped me through this treatment, but he brought me through to victory! There is hope! But, you have to do your part and ask God to do the rest! Blessings as you continue this journey.

RE: Question about stage 3 bile duct cancer prognosis

by Janey6 on Thu Mar 14, 2019 02:53 PM

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Hello Barn, I hope you’re feeling better. Of course the decision to continue treatment is yours to make. The side effects of chemo can usually be managed with good medical care. My husband found that Zofran helped greatly with nausea. I’m sure your family and friends would like to have you in their lives for as long as possible. Best wishes to you. Janey

RE: Question about stage 3 bile duct cancer prognosis

by Valeriepannone on Thu Mar 14, 2019 04:31 PM

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On Mar 11, 2019 10:31 PM Barnstable wrote:

Hello all,

Am reaching out for some insights and the experience of others.  I have Stage 3 bile duct cancer; had to have the Whipple first; and of the 42 lymph nodes removed, 25% were positive, indicating metastatic disease.  Three months later, I've just completed (last week) my first round of chemo -- 5FU -- known as the mildest.  It was God awful. Ended up in the hospital for two days.  As my prognosis longer term is not terrific, I've elected not to continue with chemo, but to let the disease progress as it will.  I feel good; am eating well; have few impacts from the Whipple.  thus, I have a hard time understanding my oncologist's prediction that without chemo I'll be dead in 3-6 months. Seems to me, given my reaction to the chemo, that I'll have a far better quality of life (QOL) during whatever time I have left on this planet. Thus, I'm clear in my decision.  My family is workign their way through it.  I'm wondering if anyone on this board has had a similar experience.  Best and thank you. 

Good afternoon, My dad was diagnosed in July 2018 stage four I’ll tack cancer. He started chemo in September after his first round he wound up in the hospital after being discharged from the hospital he finished his chemo sessions. He got the highest most potent dose of chemo anyone could get. It’s a stride and killed his immune system he wound up with C-diff infection & sepsis he went into the hospital November 6, 2018 and was discharged New Year’s eve. He gets the rigors and that’s how we know the infection is back. He is now in hospice and at the end of his life. We are so sorry he ever started the chemo. I do not recommend chemo therapy unless you are stage one or two maybe , my dad went for a second opinion in January and Philadelphia and they told him the same thing that Sloan Kettering told him. He is at the end of his life he is bedridden he gets confused and hallucinating but has no pain. In July when he got diagnosed the doctors gave him 6 to 9 month well here we are approaching month nine and he’s real bad. This cancer ate him from the inside out. My dad is 74 years old, he was a very very very active man nothing stopped him from going to work every day. Even when he got chemo the next day he stayed home to rest and the following day back to work. I am now on paid family leave to help my mom who is also recovering from radiation on her lungs from cancer. My dad doesn’t eat much sleeps a lot and keeps asking how much time does he have left. It is extremely hard to see my dad disintegrate in front of my eyes. His tumor was not operable it was attached to many vessels And if surgery was performed it would’ve been 95% chance of losing him on the operating table. The doctors did not want to take a chance. If your decision is to not do chemo I support you, I pray for you and may God bless you and give you the strength every day to live your life the fullest Val Staten Island New York

RE: Question about stage 3 bile duct cancer prognosis

by Valeriepannone on Thu Mar 14, 2019 04:33 PM

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On Mar 14, 2019 4:31 PM Valeriepannone wrote:

On Mar 11, 2019 10:31 PM Barnstable wrote:

Hello all,

Am reaching out for some insights and the experience of others.  I have Stage 3 bile duct cancer; had to have the Whipple first; and of the 42 lymph nodes removed, 25% were positive, indicating metastatic disease.  Three months later, I've just completed (last week) my first round of chemo -- 5FU -- known as the mildest.  It was God awful. Ended up in the hospital for two days.  As my prognosis longer term is not terrific, I've elected not to continue with chemo, but to let the disease progress as it will.  I feel good; am eating well; have few impacts from the Whipple.  thus, I have a hard time understanding my oncologist's prediction that without chemo I'll be dead in 3-6 months. Seems to me, given my reaction to the chemo, that I'll have a far better quality of life (QOL) during whatever time I have left on this planet. Thus, I'm clear in my decision.  My family is workign their way through it.  I'm wondering if anyone on this board has had a similar experience.  Best and thank you. 

Good afternoon, My dad was diagnosed in July 2018 stage four I’ll tack cancer. He started chemo in September after his first round he wound up in the hospital after being discharged from the hospital he finished his chemo sessions. He got the highest most potent dose of chemo anyone could get. It’s a stride and killed his immune system he wound up with C-diff infection & sepsis he went into the hospital November 6, 2018 and was discharged New Year’s eve. He gets the rigors and that’s how we know the infection is back. He is now in hospice and at the end of his life. We are so sorry he ever started the chemo. I do not recommend chemo therapy unless you are stage one or two maybe , my dad went for a second opinion in January and Philadelphia and they told him the same thing that Sloan Kettering told him. He is at the end of his life he is bedridden he gets confused and hallucinating but has no pain. In July when he got diagnosed the doctors gave him 6 to 9 month well here we are approaching month nine and he’s real bad. This cancer ate him from the inside out. My dad is 74 years old, he was a very very very active man nothing stopped him from going to work every day. Even when he got chemo the next day he stayed home to rest and the following day back to work. I am now on paid family leave to help my mom who is also recovering from radiation on her lungs from cancer. My dad doesn’t eat much sleeps a lot and keeps asking how much time does he have left. It is extremely hard to see my dad disintegrate in front of my eyes. His tumor was not operable it was attached to many vessels And if surgery was performed it would’ve been 95% chance of losing him on the operating table. The doctors did not want to take a chance. If your decision is to not do chemo I support you, I pray for you and may God bless you and give you the strength every day to live your life the fullest Val Staten Island New York
It’s started in the bile duct and spread to the liver

RE: Question about stage 3 bile duct cancer prognosis

by monicawoler on Thu Mar 14, 2019 06:37 PM

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My 84 year old Mother was diagnosed with Stage 3 Bile Duct cancer 2 years ago.  She was overweight, that being her only health issue.  She had a liver resection and and chemo and she healed up very well.  The chemo was a but rough and she had 3 blood transfusions during the course of treatment and on a few occasions needed to be rehydrated and postpone the chemo.  She is tough and is a fighter and she is doing extrememly well.  She lost about 50 pounds.  She has had life long stomache issues which have gotten worse but she is managing.  My thought and prayers are with you and please don't hesitate to reach out to me if you want any additional information.  It is truely a very personal decision and I do hope that you have the support of your family and friends.  I advocated for my Mom and was present at her doctor visits and some treatments.  I review all of her test results and go over everything with her doctors.  I think it helped her a lot to have an advocate.

RE: Question about stage 3 bile duct cancer prognosis

by Valeriepannone on Sat Mar 16, 2019 07:48 AM

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On Mar 14, 2019 6:37 PM monicawoler wrote:

My 84 year old Mother was diagnosed with Stage 3 Bile Duct cancer 2 years ago.  She was overweight, that being her only health issue.  She had a liver resection and and chemo and she healed up very well.  The chemo was a but rough and she had 3 blood transfusions during the course of treatment and on a few occasions needed to be rehydrated and postpone the chemo.  She is tough and is a fighter and she is doing extrememly well.  She lost about 50 pounds.  She has had life long stomache issues which have gotten worse but she is managing.  My thought and prayers are with you and please don't hesitate to reach out to me if you want any additional information.  It is truely a very personal decision and I do hope that you have the support of your family and friends.  I advocated for my Mom and was present at her doctor visits and some treatments.  I review all of her test results and go over everything with her doctors.  I think it helped her a lot to have an advocate.

Wow so glad to hear she pulled throug!! That’s wonderful news! Seems they got it all now she has to fight every day,, also see if she can get immune shots to avoid infections if they do occur; your very prone to infections after er chemo+ it’s very common.. I am willing to answer any kinda of question anyone has. We are in this message board for a reason and that is for support and knowledge from others- I’m always willing to help, MAY GOD BLESS YOU ALL & Stay strong??????
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