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valeriepannone's Message Board Messages

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Hello, my name is Val, I am from Staten Island New York and my dad was diagnosed in July of 2018 with bile duck liver cancer, aka- Cholangiocarcinoma. Sadly dad passed in 8 months in March of 2019. This has been one hell of a journey. Because I couldn’t help my dad and save him I felt the need to make a little diary with notes and pictures and videos about my dad and this vicious journey I was on along with my sister and my mom. Dad was 74 years old, he had no idea he had it. Dad always took very very great care of himself very well he went to doctors, always made sure he was healthy and OK. He went for his normal routine check up and did blood work. In a day or so the dr called said his liver Enzymes were through the roof and he needed him to go to the hospital and get tests done immediately. While being in the hospital he had gotten pet scan CAT scan every test you could possibly think of and then was sent home. While waiting for results dad started to turn yellow that’s when we knew it was the liver. After more testing and more testing a tumor was found in the bile duck and was not operable nor did he qualify for a liver transplant. He started chemotherapy in September 2018 he did six or seven chemo treatments and he got the most highest dose the most potent dose of chemo anybody can ever Get. Well dad started to get infections he had sepsis, C-diff, bacterial fungal infection, He kept getting one infection after the other and actually spent two months straight in the hospital in Sloan Kettering in New York City . Well long story short we don’t know what killed dad, we don’t know if it was the cancer or if it was the infections. Because he had so many infections his cancer went untreated. Cholangiocarcinoma Is a very aggressive, rapid cancer. Dad was at stage 4 when he found out. I knew deep down in my heart that he was not going to beat this and it was going to be an excruciating ,traumatizing , heart wrenching journey . And boy was I right and then some. He had drains in his liver he had a stent put in three times, he had a tube in his abdomen to drain the fluid out of his stomach and also had a drain in his chest to remove the fluid around his lungs. He was full of fluid buildup & very bloated , although he lost over 60 to 70 pounds his stomach was still very very swollen and big. When he was finally discharged from the hospital December 31, 2018 I knew it was our last New Year’s Eve with him. He went from this big strong man active man who still fixed houses, Went to work every single day an hour and a half drive away from where we lived. And from seeing him going from being extremely active healthy to bed ridden tore the heart right out of my chest. I had to go on medical leave because mom was just recovering from her lung surgery due to cancer and she was taking care of my dad the best she could but she needed help too so me and my sister were there all the time helping they were never alone. Dad couldn’t be left alone he was determined that he was going to beat it always tried to get up from his chair to only fall down. When he was bedridden he had hallucinations he saw things that weren’t there, he even tried to get out of bed one day and told me I got to go to work I got things to do I can’t stay in bed. I had told him OK dad but you’re gonna have to wait a little bit and then I will help you go to work. I knew he was going to forget because again he was having hallucinations and yes he did forget about it and didn’t ask to get out of bed to go to work. He tried to eat but very little because he was trying to build up his muscle mass because he wanted to get rid of the infections and start radiation being chemo did nothing.. He was nonverbal two weeks before he passed and stop eating about a week or 2 before he died. He did drink water till the last week.... he was in diapers for approximately 3-4 weeks.. The day before he passed he was not responsive, he was in a dead stare, if you called him He just stared I don’t know if he heard me or knew that I would call him and say dad can you hear me but I got no response he was just staring in one direction not a blink not a tear just a dead cold stare. The night before dad died I slept in bed with him he was on one side I was on the other and I watched him all night his breathing was bad two weeks before but got worse that night about 4 AM March 23 he started to moan really loud and his body kept jerking and twitching . So I stayed up I couldn’t go back to sleep I got out of bed and sat in the chair right next to him until 9:15 AM that morning. My mom came in the room and asked me to go to the store for her and I did,. I looked it Dad and said “ dad I will be right back I have to go to the store for mom Ill be back quick. And again no response a dead stare at this point one of his eyes was half closed the other eye staring in a different direction and his mouth wide-open his chest was pumping up and down the air the pulse you can see it pulsating through his neck and he had the death rattle. The death rattle sounds like congestion like you have a cold and mucus in the back of your throat so that’s what the death rattle sounds like. Dad was given morphine to help the breathing about three weeks before his passing well anyway I went to the store for mom I came back and I pull up to the house and I’m looking at it and I am remembering when we first moved in I was 3 years old my sister was 7 years old, Dad made me a cup of tea set me on the couch and told me I’m a big girl and to drink out of a cup now no more bottles and I did. Me and dad used to spend many nights on the couch watching TV me laying next to him and sometimes having a snack. Well I snap out of it I get out of the car with tears pouring down my face and I walk in the door and I said dad I’m back I’m coming up to see you and I hear crying lots of crying it’s my mom and my sister, dad had passed away right before I walked in the door. As I heard the crying I’m coming up the steps crying because I know that he was gone then I went to his bed and broke down in tears, disbelief, angry I was devastated. I knew he didn’t wanna die in front of me I knew he waited for me to leave I felt in my God because he knew how sensitive I am and how sick I was over seeing him go through what he did knowing I was going to lose The one and only man in this world I can trust, my hero, my first love, my best friend, my playmate when I was a kid, my lawyer for my divorce, my contract that when I was building my house, he was my everything. I would like to say I am an advocate of this vicious disease and I am willing to speak to anybody who needs help in the beginning of their journey with this vicious beastly cancer. My email is as follows: Valoo126@yahoo.com Please caregivers, patients, friends or relatives who are suffering from Cholangiocarcinoma feel free to reach out. I will do my very best to be there and support you and answer any kind of questions or concerns you have. I am advocating 2 families and I’ll do 100 if I have to! I have pictures and videos from the very beginning - right to the last hour before he died. I am willing to share what ever you will need to get answers and what to expect,, please reach out to me anytime.. I meant it!! May god bless you all and take one day at a time, it’s all you can do. The waiting is torture I know.. I know you want answers right away. Anyway I said long story short and i wrote a book haa.. sorry it’s just that there’s so much more to tell. So please email me when ever you need to,, I am on top of my emails and will answer you asap. Wishing you all strength, and sending you all huge hugs .... Val Pannone

Epiglottis

by Valeriepannone - October 16 at 6:11 PM

Hello, my mom is 75 years old and was just diagnosed with throat cancer/ Epiglottis. She can not have surgery because the mass is too close to the voice box. She is going to see a doctor Tuesday 22nd to see options. I no Dr's mentioned radiation and chemo,, i don't know what to expect from this. my dad just passed in March of cholangiocarcinoma. So i no nothing about this. Can someone help?

On Sep 30, 2019 6:46 PM GreZzlys wrote:

fdgdfg

Hello,

I didn't get a message from you, just a blank screen

Cholangiocarcinoma Advocate

by Valeriepannone - September 03 at 6:10 PM

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 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 

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About valeriepannone

Caregiver
Bile Duct Cancer, Liver Cancer

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