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Valeriepannone's Message Board Messages

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On Sep 21, 2012 6:15 PM amiehood21 wrote:

Hello,

 

I posted a previous discussion about the diagnosis of my 48 year old dad. He is now in the end phases of bile duct cancer and I am looking to get some more information on what the "end" will be like?

 

We have started hospice recently. He has had alot of trouble with his ears feeling stopped up (don't know if this is associated with cancer symptoms or not?). He has been less interested in food and has been vomitting alot lately. Last night he fell in his bedroom and then today he fell off the porch. The hospice nurse advised to keep him down in the bed to reduce the risk of breaking any bones. Can anyone tell me if their loved one started taking falls? We aren't sure if this could be attributed to the lack of food or if its just something he will go through.

 

I am sorry if this post is vague or if I am rambling, I am just desperately looking for more answers so that I can be prepared for what is happening and what is going to come.

 

Thank you all.

 

Amie

Hi Aime I'm Val, I was reading your blog.. how is everything going? How are you holding up?

Hello, My name is Val. My dad was diagnosed with cholangiocarinoma in July of 2018. If anyone needs to reach out to me please don't hesitate. I will do my best to share all information with you & answer any questions you may have. This cancer is very rapid and aggressive and my dad faught for his life for 8 months. He passed this march. If i can help you in any way let me know. my email is valoo126@yahoo.com email me anytime! 

Sincerely,

Val Pannone in Staten ISland New York

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

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

On May 20, 2019 3:28 PM lovingson321 wrote:

On May 20, 2019 2:46 PM johnfantastic wrote:

Lovingson321,

Can your mom still take lots of fluid intake? Based on my friends testimony, Her sister takes 6-10 cups of Guyabano Leaves Tea a day. But again this is no guarantee of a cure, but it is a very cheap remedy.

My aunt also has started feeling better even without medical treatment because their family can't afford it.


I will ask my friend first if it is okay with him if you contact him directly. But you can ask me some questions here.

First of all thank you so much for replying...I totally understand it might not work for everyone but i havenothing to lose right now. Only other option i read on the forum was to use cannabi oil but i believe it wont be easy to get it and then make it in the country i live. is guyabano leaves same as what is called sour soap? someone is selling me in my country if you could share a picture  link of the leaves..

yes my mom is able to drink water 6-7 times a day right now..but she is really developing mental confusion... thanks once again

confusion and hallucination is to be expected. Just go along with the hallucinations. My dad kept telling me their was a flood in the hallway and their wasn't but i told him " don't worry dad i clean it up" and he was at ease with that. He had a few of those and we just went along with it. He also confused his urine cup with his water bottle so he had to be closely watched. He'd also kept pulling and tugging at his drains so we had to watch that too. Very sad it's just terrible how he suffered.. Let me know if oyu have any other questions.

 Val

On May 19, 2019 2:16 AM COFFEEMAN123 wrote:

Thank you so much Val

Anytime! I am in the middle of becoming an avocate for cholangiocarcinoma. I submitted my application and now have some training to complete. If you have any other questions on anything about this cancer or what to expect let me know. I will try to help you the best i can. Hang in there. One day at a time.. baby steps  :)

Val 

On May 15, 2019 3:05 PM Close5 wrote:

Good thought...hadn't crossed my mind.   I will mention it to my mom who can ask at the next appt.

anytime! Stay strong god bless!

On May 14, 2019 6:14 AM PD_NEC wrote:

On May 12, 2019 6:56 PM COFFEEMAN123 wrote:

My dad was diagnosed 2 to 3 years ago by a regular colonoscopy, they found polyps, biopsied to discover it's cancer. After the procedure to take out the polyps in the colon, they discovered polyps on the pancreas.

To discover he had Pancreas and Colon that has not met, which is rare. Kaiser was dumbfounded and asked for the City of Hope to be the umbrella of his care.

He has been fighting with radiation at first then chemo repetitively. About 3 to 4 months back the oncologists Dr gave him false hope but by me working in the medical, I was skeptical. It took another Dr to tell my folks the cancer is everywhere which brought him into a deep depression and completely brought down his morale. This week in May 2019, a huge blow made me numb. He was hospitalized with bilat pneumonia being weak and pale. Yesterday, we met with the palliative care team and they transferred him home via ambulance. It's sad to see my dad so weak and cancer literally killing him.

I don't know how to act, what to say, how to respond?

All i can say is that I am numb!!!!

I am really sorry man. I feel the same way - sometimes numb, angry most of the time, depressed and helpless.

I'm the daughter of a cancer patient as well. In july 2018 my dad was diagnosed with bile duck and liver cancer stage 4. I felt like someone threw bricks at my chest. I couldn't believe my dad was sick. He was 74 years old. In July the doctors gave him 6-9 months to live.. He lived 8 months and passed away this march 2019. I know how you feel. I've watched my strong father got tobeing bed ridden, his beautiful amile turned to a frown, his eyes that once had life in them turned dark and cold. He was disappearing right in front of me. He lost so much weight and at the final days of his life he could not speak, he went into a light coma. He had the death rattle that night and his body kept jerking of muscle spasms.. He suffered. He didn't have any pain although morphine was given to him to help his breathing because he was breathing so fast, 30 breaths in one minute. It was heartbreaking to watch him go through this.. I know exactly how you feel. Try to stay strong in front of them, if you have to cry walk away. Don't let him see you cry. It makes their departing harder.. feel free to ask me anything!

Val Pannone

Saten Island 

On May 07, 2019 7:54 PM saint_123 wrote:

No new advice but just wanted to mention that my brother is 6 months out of whipple and still suffers from chronic diarrheae. more recently, he has had some success with Imodium. He is also managing smaller meals which seems to help also.

good luck with your fathers situation. As others have said,  diarrheae and vomiting together is abnormal. Keep poking at the doctors. 

Not if they have c-diff.... 

On Mar 07, 2019 12:32 PM myley06 wrote:

My husband has bile duct cancer and his chemo treatment was stopped last August  since then he has been admitted to hospital several times with infection. He has been in the hospice now for 2 weeks  to regulate his medicines and again suffered rigors last Sunday.  We are fortunate having the local hospice for support. It is devastating to watch the suffering he is going through but have been told to expect bouts of infection.

Just checking into see how you are?

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About Valeriepannone

Caregiver
Bile Duct Cancer, Liver Cancer

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