Advice on Bile Duct Cancer

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Advice on Bile Duct Cancer

by Holder3 on Wed Jun 12, 2019 02:57 PM

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Hello, My beautiful wife of 25+ years was diagnosed with advanced statge 4 Bile Duct Cancer 2 weeks ago and i am lost, scard and I need advice. If anyone would please help me with some questions I have I would be greatful. History of my wife, she will be 49 june 18 and has never been admitted to the hospital since the birth of our child 19+ years ago. She is fit, does not drink, never smoked and has never had any ailment that would harm the liver. we have been told its advanced stage 4, but they will give her a chance to fight this. What can I expect ? what can I do to help ? They have not given us a time line, but I feel it is not good. She has started to lose weight, holding large amounts of fluid and is starting to become weak. Her pain is not that bad according to her its just the discomfort. I think she does not want my daughter and I to know how bad the pain is. Her mind is as Sharp as ever. Please help if you can. Thank You and God Bless Jody

RE: Advice on Bile Duct Cancer

by riverak on Wed Jun 12, 2019 03:51 PM

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On Jun 12, 2019 2:57 PM Holder3 wrote:

Hello, My beautiful wife of 25+ years was diagnosed with advanced statge 4 Bile Duct Cancer 2 weeks ago and i am lost, scard and I need advice. If anyone would please help me with some questions I have I would be greatful. History of my wife, she will be 49 june 18 and has never been admitted to the hospital since the birth of our child 19+ years ago. She is fit, does not drink, never smoked and has never had any ailment that would harm the liver. we have been told its advanced stage 4, but they will give her a chance to fight this. What can I expect ? what can I do to help ? They have not given us a time line, but I feel it is not good. She has started to lose weight, holding large amounts of fluid and is starting to become weak. Her pain is not that bad according to her its just the discomfort. I think she does not want my daughter and I to know how bad the pain is. Her mind is as Sharp as ever. Please help if you can. Thank You and God Bless Jody

Jody,

We are so very sorry to hear about this challenge and would like to provide some guidance to you in this time of need. One of our experienced Patient Advocates is available now to assist you at 847-342-6493. Please feel free to reach out anytime.

Looking forward to helping you,
Karen Rivera
CTCA Community Engagement and Outreach Team

RE: Advice on Bile Duct Cancer

by Waldo1 on Thu Jun 20, 2019 04:05 PM

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I am so sorry that your wife is going through this...My husband had Stage IV Ampullary cancer and also like your wife, had started to lose weight by the time he started treatment - I think he was 52 when he started treatment and he is going on 11 years cancer free in August!!  Yes, there IS HOPE!!!  Do not lose that!!  Please let her know that as well!!!

I have his story somewhere on this board if you want to know his history - I think it is under "Stage IV success story without whipple" - under Ampullary cancer - I won't go into all the details here...However, Ampullary, Pancreatic and Bile Duct cancers all have about the same treatments - the trial that John was in was for "Pancreatic, Ampullary & Bile Duct stage IV inoperable" We hoped that he would be able to reduce the primary tumor and all the tumors in his liver with Chemo and then they would be able to do the Whipple operation - In John's case, after the Chemo there was nothing left to remove, and he never had to have surgery -

These cancers march fast!  My suggestion for you is what I did for John - You, as her advocate, need to research and get her records to groups that specialize in these types of cancers - I sent records to UCSF, Stanford and MD Anderson - We were fortunate that our first appointment was in San Francisco with Dr. Ko at UCSF - He told us he had a clinical trial what was just starting for two different chemos and that he would still consider surgery if we would be able to reduce the tumors - He told John not to give up hope!!  Best decision of our lives!  John also had an appt scheduled with Dr. Fischer at Stanford who was treating Patrick Swazy at that time and I also spoke with MD Anderson in Texas, who looked at his records and told me that they thought the trial at UCSF was best, and if he did not respond to call them because they had other options for us...We had a Blue Cross PPO plan which allowed us to call different groups for treatment - we were not bound to just in-network providers which was very fortunate -

Anyway, again this will be very hard on you all - but you have to stay positive in front of her - don't let her know your fears or every little statistic or set back - she needs to keep her strength and she needs to keep positive to fight this - and she can only do that if you and your familiy/friends around her do so too!  I banned my mother in law from talking to John because she would cry each time and he would have to comfort her - I told her that if I could keep it together in front of him day in and day out she could as well!!  I became his attack dog - no one was allowed to be down or weepy around him - i didn't care what they did once they hung up the phone, or were out the front door, but in front of him we needed positivity and things that would make him laugh and forget the horror he was going through...there is so much negativity out there - and until you are going through this you don't realize hou many times a day you hear the word "cancer" in commercials and TV programs - there are reminders everywhere you look and it can get so hard - Driving to the grocery store was my time to sob...the shower was also a good cover for that!! :-)  

Before we saw Dr. Ko I also did my research on clinicaltrials.gov - I would suggest you look there as well - see if she qualifies for a trial - with her health history she would be a good candidate - John also was healthy, never smoked - ocassional glass of wine - he also never had pain with this cancer, only nausea and intense itching before they placed the stent to keep the bile ducts open...do your research - know the treatments that are available - if you have a Dr. that seems disinterested or negative about all this get another Dr. - John's first oncologist, who was well respected and head of the cancer board for Northern California, knocked down every single treatment or chemo that I brought up to him - he told John that he should start pallative care (which would have been a BIG mistake as John would have become inelligible for his trial) and just enjoy the next 8 months that he gave him to live

- he said that NO Dr. would every consider surgery on him with his Stage IV cancer - and surgery was the ONLY cure...John wrote a letter to him later to let him know that he was cancer free - the Dr. was thrilled - I think sometimes they just see so much negativity that they have a hard time with hope themselves as well...

You have YOUR work to do - DO NOT GIVE UP HOPE!!  Keep her positive - look for the best treatments with best out comes - go for a cure not pallative - it  happens more often than you hear - We are living proof of that!! I don't know your background or faith, but I believe in the power of prayer as well as excellent medical care - I will be praying for you all...Tracie

RE: Advice on Bile Duct Cancer

by Holder3 on Thu Jun 20, 2019 08:33 PM

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Waldo1, Thank you so much for your response. I have sent her records, scans and all test to Atlanta cancer center, and Mayo Clinic, she is being treated at MUSC in Charleston SC. Dr Ruben was very honest and straightforward with us. He is starting her on chemo next week and if she responds well it will open up other available treatments. There is always Hope and I will never give up. She said she will fight this until it kills her or until she is better. My daughter and I nicknamed her the Warden about 15 years ago, she is one tough lady!! I do not want to see her suffer and want to make it as easy on her as I can. Today she ask for pain medication for the first time in the 27 yrs I have known her, scared me, but happy she is not going to suffer 24-7. Hope this gives some relief and she is able to sleep. She is very weak and I am worried that the chemo will kill her. What should I expect? And is there anything I can do to help her ? I will trust in God’s plan for our family and one day I will understand all of this. Again Thank You Jody

RE: Advice on Bile Duct Cancer

by Coldfeet on Mon Jul 15, 2019 09:18 AM

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Has surgery been an option

RE: Advice on Bile Duct Cancer

by Valeriepannone on Tue Jul 16, 2019 05:13 PM

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On Jun 12, 2019 2:57 PM Holder3 wrote:

Hello, My beautiful wife of 25+ years was diagnosed with advanced statge 4 Bile Duct Cancer 2 weeks ago and i am lost, scard and I need advice. If anyone would please help me with some questions I have I would be greatful. History of my wife, she will be 49 june 18 and has never been admitted to the hospital since the birth of our child 19+ years ago. She is fit, does not drink, never smoked and has never had any ailment that would harm the liver. we have been told its advanced stage 4, but they will give her a chance to fight this. What can I expect ? what can I do to help ? They have not given us a time line, but I feel it is not good. She has started to lose weight, holding large amounts of fluid and is starting to become weak. Her pain is not that bad according to her its just the discomfort. I think she does not want my daughter and I to know how bad the pain is. Her mind is as Sharp as ever. Please help if you can. Thank You and God Bless Jody

Hello, My dad was diagnosed last july 2018 with stage 4 bile duct and liver cancer.  A tumor was found and after many biopsy and testing it came back stage 4 Cholangiocarcinoma. The doctor gave him 6-9 months. I dropped to the floor in disbelife. He began chemo in August of 2018 and , after that it was all down hill.  He kept getting infections, like sepstis and septic and fungial bacteria. He could not get rid of the infections. He spent more time in the hospital than he did at home. He would come home for a few days and then he'd wind up back at the hospital. well March 1st he could hardly talk and was all skin and bones. He passed away March 23rd. About 2-3 weeks before he passed, he started to hallucinate and see things that weren't there. He didn't eat much and could hardly drink or even raise his hand or head or legs. He was bed ridden in February. He did not have pain but he had a very hard time breathing. So to help the breathing we gave him morphine, We Started hopice sometime in end of April begining of May. All they do is order supplies you'll need. My dad had a stent put in right away when he found out there was a blockage. He also turned very yellow. He also had a drain to drain the liver, he had a drain in his chest to drain fluid and a drain in his stomach also to drain out the fluids. His feet were swollen and he was just full of fluid all through out his body. Me my sister and mom all took turns tending to him and making sure he was comfortable and pain free even tho he had hospive, visiting nurses and doctor on call. I wound up taking paid family leave March 6th to help my mom and sister. It was the best thing i could have ever done. 

I slept in the same bed with him the last night he had with us. His body was jerking and he moaned alot.. If you need to get in touch with me you can email me. I am a cholangiocarcinoma advocate. I joined the foundation after my dad passed. I felt i can help people on what i've been throgh with dad, & i'm hoping to give some peace of mind. It's very scary i no how you feel. My dad was my rock, he was my everything. My dad was 74 years old and he was a very very active man. Not one to lay around. He never wanted to retire because he felt once you retire you will die and he did not want that. He worked even after chemo treatments, but the chemo and infections were too much for him. Did the chemo shrink the tumor like we hoped for, NO it did not. We were going to try radiation but with all the infections he kept getting his cancer went untreated and it did spread and more tumors appeared. This cancer is rapid and aggressive... my email is valoo126@yahoo.com email me anytime! I wish you the best. and always stay positive in front of your wife. Don't cry in front of her, try to smile and make her laugh, it's hard for them to see us the care givers so upset and worried and then that makes the patient upset and they start to feel bad like their a burdon.. Email me anytime you want to! I have kept a diary and i've taken pictures and video's of my dad throught is whole process. It's very hard to watch our loved oned go through this. Stay string and keep in touch!!! 

Sincerely,

Val Pannone Staten Island

RE: Advice on Bile Duct Cancer

by Valeriepannone on Tue Jul 16, 2019 05:16 PM

Quote | Reply

On Jun 12, 2019 2:57 PM Holder3 wrote:

Hello, My beautiful wife of 25+ years was diagnosed with advanced statge 4 Bile Duct Cancer 2 weeks ago and i am lost, scard and I need advice. If anyone would please help me with some questions I have I would be greatful. History of my wife, she will be 49 june 18 and has never been admitted to the hospital since the birth of our child 19+ years ago. She is fit, does not drink, never smoked and has never had any ailment that would harm the liver. we have been told its advanced stage 4, but they will give her a chance to fight this. What can I expect ? what can I do to help ? They have not given us a time line, but I feel it is not good. She has started to lose weight, holding large amounts of fluid and is starting to become weak. Her pain is not that bad according to her its just the discomfort. I think she does not want my daughter and I to know how bad the pain is. Her mind is as Sharp as ever. Please help if you can. Thank You and God Bless Jody

Hello, My dad was diagnosed last july 2018 with stage 4 bile duct and liver cancer.  A tumor was found and after many biopsy and testing it came back stage 4 Cholangiocarcinoma. The doctor gave him 6-9 months. I dropped to the floor in disbelife. He began chemo in August of 2018 and , after that it was all down hill.  He kept getting infections, like sepstis and septic and fungial bacteria. He could not get rid of the infections. He spent more time in the hospital than he did at home. He would come home for a few days and then he'd wind up back at the hospital. well March 1st he could hardly talk and was all skin and bones. He passed away March 23rd. About 2-3 weeks before he passed, he started to hallucinate and see things that weren't there. He didn't eat much and could hardly drink or even raise his hand or head or legs. He was bed ridden in February. He did not have pain but he had a very hard time breathing. So to help the breathing we gave him morphine, We Started hopice sometime in end of April begining of May. All they do is order supplies you'll need. My dad had a stent put in right away when he found out there was a blockage. He also turned very yellow. He also had a drain to drain the liver, he had a drain in his chest to drain fluid and a drain in his stomach also to drain out the fluids. His feet were swollen and he was just full of fluid all through out his body. Me my sister and mom all took turns tending to him and making sure he was comfortable and pain free even tho he had hospive, visiting nurses and doctor on call. I wound up taking paid family leave March 6th to help my mom and sister. It was the best thing i could have ever done. 

I slept in the same bed with him the last night he had with us. His body was jerking and he moaned alot.. If you need to get in touch with me you can email me. I am a cholangiocarcinoma advocate. I joined the foundation after my dad passed. I felt i can help people on what i've been throgh with dad, & i'm hoping to give some peace of mind. It's very scary i no how you feel. My dad was my rock, he was my everything. My dad was 74 years old and he was a very very active man. Not one to lay around. He never wanted to retire because he felt once you retire you will die and he did not want that. He worked even after chemo treatments, but the chemo and infections were too much for him. Did the chemo shrink the tumor like we hoped for, NO it did not. We were going to try radiation but with all the infections he kept getting his cancer went untreated and it did spread and more tumors appeared. This cancer is rapid and aggressive... my email is valoo126@yahoo.com email me anytime! I wish you the best. and always stay positive in front of your wife. Don't cry in front of her, try to smile and make her laugh, it's hard for them to see us the care givers so upset and worried and then that makes the patient upset and they start to feel bad like their a burdon.. Email me anytime you want to! I have kept a diary and i've taken pictures and video's of my dad throught is whole process. It's very hard to watch our loved oned go through this. Stay string and keep in touch!!! 

Sincerely,

Val Pannone Staten Island

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