Stage 4 Bile duct Cancer

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Stage 4 Bile duct Cancer

by Nkhan12 on Wed Nov 16, 2016 06:21 PM

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Hello All,

My dad has recently been diagnosed with stage 4 bile duct cancer which has spread to his bones. It has been 4 months since the diagnosis and he is being treated at Memorial Sloan Kettering. He had 4 sessions of chemo (Cis/Gam) which was scheduled for every 2 weeks. Later on his blood count and platelet count was low therefore the doctor delayed the chemo. Today was suppose to be his 5th chemo however doctor said no and told us to get two blood transfusions. Now the doctor is telling us if he his tumor doesn't shrink then he may not want to continue chemo since his blood count is very low. Any advice or suggestions on what we should do? Its heartbreaking to see my dad in pain and just sleeping the entire day. He went from 160 lbs to 123 lbs. He can hardly walk and has no appetitie. Any family member went through this or have any suggestions? Thank You for taking time to read this and God Bless you all!

RE: Stage 4 Bile duct Cancer

by shanie1017 on Mon Nov 28, 2016 09:53 AM

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Hello.  I'm so sorry to hear about your dad.  My dad was just diagnosed with bile duct cancer in October.  We don't have the staging information yet, but we believe it's either Stage 2 or 3 (the cancer has spread to the lymph nodes, but not to any other organs).  We'll find out more once he begins to see an oncologist, but so far, he's been in and out of the ER.  He suddenly developed jaundice one day, so we took him to the ER, and that's how he was diagnosed with bile duct cancer.  They gave him biliary drains, and he was supposed to start seeing an oncologist once he was discharged from the hospital, but he had to return to the ER because of biliary drain issues (infection, pain).  On the positive side, his bilirubin level has steadily gone down, and his vitals look good.  On his last visit to the ER, all of his test results looked good and the doctors said they couldn't see anything wrong with him other than the cancer, but he has his ups and downs.  Some days, he's fine, but on other days, he's weak, has pain on his right side, and his feet get swollen.  Like your dad, he has lost significant weight.  He had already started to lose weight even before he was diagnosed because he had begun to lose his appeite, but he's lost at least 20 lbs. since then (and he was already very thin to begin with).  He had no trouble walking before he was hospitalized, but being bedridden in the hospital made him weaker in some ways and he needs to use a walker now most of the time.

I know your dad has no appetite and bile duct cancer makes eating very difficult, but he needs to eat in order to regain his strength and gain some weight.  Is he at least drinking smoothies, Ensure, or juices?   

 

RE: Stage 4 Bile duct Cancer

by Nkhan12 on Mon Nov 28, 2016 04:54 PM

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On Nov 28, 2016 9:53 AM shanie1017 wrote:

Hello.  I'm so sorry to hear about your dad.  My dad was just diagnosed with bile duct cancer in October.  We don't have the staging information yet, but we believe it's either Stage 2 or 3 (the cancer has spread to the lymph nodes, but not to any other organs).  We'll find out more once he begins to see an oncologist, but so far, he's been in and out of the ER.  He suddenly developed jaundice one day, so we took him to the ER, and that's how he was diagnosed with bile duct cancer.  They gave him biliary drains, and he was supposed to start seeing an oncologist once he was discharged from the hospital, but he had to return to the ER because of biliary drain issues (infection, pain).  On the positive side, his bilirubin level has steadily gone down, and his vitals look good.  On his last visit to the ER, all of his test results looked good and the doctors said they couldn't see anything wrong with him other than the cancer, but he has his ups and downs.  Some days, he's fine, but on other days, he's weak, has pain on his right side, and his feet get swollen.  Like your dad, he has lost significant weight.  He had already started to lose weight even before he was diagnosed because he had begun to lose his appeite, but he's lost at least 20 lbs. since then (and he was already very thin to begin with).  He had no trouble walking before he was hospitalized, but being bedridden in the hospital made him weaker in some ways and he needs to use a walker now most of the time.

I know your dad has no appetite and bile duct cancer makes eating very difficult, but he needs to eat in order to regain his strength and gain some weight.  Is he at least drinking smoothies, Ensure, or juices?   

 

Hi,

I sorry to hear about your dad as well. This cancer is a scary thing and I honestly believe its what we eat that causes cancer. Yeah my dad didnt have symptoms related to bile duct but last month he was looking a bit yellow and his bilirubin was high and thats when the doctor placed a stent on his bile duct and now his bilirubin is normal. Thats goods to know that it hasnt spread to his other organs. The same thing with my dad some days he is good but other days he just wants to be in bed. Since his cancer spread to the spinal cord he has serious pain in his back and legs and therefore he cannot walk. 

We all try to explain to him that he needs to eat to gain energy and to cure himself. So we have him on juices, smoothies but its not enough he needs to eat more. Also we started giving him apricot kernels about 30 of them daily since we heard of the B17 cure.

Last week after his PET Scan it showed that after 4 sessions of chemo he has no progress. So we decided to no longer give him chemo and try to get him better by natural remedies like juicing and apricot seeds. I pray that he gets well asap. 

I hope your dads get the correct treatment and fights against this scary disease. Also if you can get another treatment besides chemo I would go for that. Seriously I've witnessed how chemo can really weaken you and make you worse than before. 

Keep me updated on your dad as its really nice to have someone else to talk to and get good advice or suggestions. I wish your dad and you the best!

RE: Stage 4 Bile duct Cancer

by shanie1017 on Thu Dec 07, 2017 10:00 AM

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Hi.  How is your dad?  

RE: Stage 4 Bile duct Cancer

by granitejunkie on Thu Dec 28, 2017 12:48 PM

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Hello, How is your father feeling ? I am sorry to hear about his diagnosis. I always feel weird about saying my experience with my mother because it is dark and not uplifting. Your father is doing much better compared to how my mother did. She only could go with one round of chemo before we had to kick that idea. THe doctor informed us that chemo statistically does not do anything for this perticular cancer. :(

My mom went to hospice two weeks after her chemo and she died shortly there after. We were wise because we started talking about her end of life wishes and made sure we could fulfill her wishes.

I wish the best for your father and your family. <3

RE: Stage 4 Bile duct Cancer

by Nkhan12 on Thu Dec 28, 2017 04:41 PM

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On Dec 28, 2017 12:48 PM granitejunkie wrote:

Hello, How is your father feeling ? I am sorry to hear about his diagnosis. I always feel weird about saying my experience with my mother because it is dark and not uplifting. Your father is doing much better compared to how my mother did. She only could go with one round of chemo before we had to kick that idea. THe doctor informed us that chemo statistically does not do anything for this perticular cancer. :(

My mom went to hospice two weeks after her chemo and she died shortly there after. We were wise because we started talking about her end of life wishes and made sure we could fulfill her wishes.

I wish the best for your father and your family. <3

Hello my father unfortunately passed away on January 2017. I can’t believe it’s going to be a year since he left this world. Yeah I definitely don’t want to remember those bad times. I really wish we got a chance to say goodbye to my dad the right way. My family and I all were in denial. Yeah cancer really does suck. I wish the best for all of you.

RE: Stage 4 Bile duct Cancer

by granitejunkie on Fri Dec 29, 2017 11:46 AM

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:( 

Oh that sucks. THe holidays must have been tough, I know they were for me. Cholangiocarcinoma is ruthless. The only thing I hold onto is mom was not in pain for too long. SHe left abruptly, and I miss her, but i would hate her to still be here and in so much pain. 

RE: Stage 4 Bile duct Cancer

by Nkhan12 on Fri Dec 29, 2017 04:56 PM

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On Dec 29, 2017 11:46 AM granitejunkie wrote:

:( 

Oh that sucks. THe holidays must have been tough, I know they were for me. Cholangiocarcinoma is ruthless. The only thing I hold onto is mom was not in pain for too long. SHe left abruptly, and I miss her, but i would hate her to still be here and in so much pain. 

Yeah I feel like you and me both feel the same. I don’t think I would be mentally ok if I had to witness my dad suffer any longer. Yeah I think back to this time last year and how exhausted we were and didn’t know what was store for us in the near future. I just pray for the best for all the individuals dealing with this illness. Take care! Happy New Year!
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