My husband was diagnosed with stage 4 cholangiocarcenoma with his only symptoms being slight weight loss and nausea. His liver enzymes were NEVER abnormal. He fought like hell for 19 months and passed away 5 months ago. So much more research is greatly needed for this cancer. Thank you so much for this documentary. I knew it was rare, but I had no idea of the numbers.
So sorry for the loss of your husband I've lost my sister to cancer and my husband had his bladder removed due to cancer he is now scanned twice a year Cancer is so devastating to Watch your loved one suffer is heartbreaking 😢 sending you ❤ and 🙏 from Scotland
@assi2424 cancer certainly does not discriminate or care who it takes. I'm so sorry about your sister and thankful your husband has made it through. Prayers for his continued journey and blessings to you.
Thank you Stacie and family for founding The Cholangiocarcinoma Foundation. My husband was diagnosed with stage 4 and died 5 months later in 2011. He fought hard but did not really have a chance. God bless those who face this awful cancer for it totally rocks the family. ♥
I was just diagnosed with stage four cholangiocarcinoma in March of 2023. The only symptom I had was one night of severe pain in the upper right abdomen area. I went to urgent care the next morning and the Dr there ordered a ton of bloodworm and had me scheduled for a sonogram the next day. The imaging place called me back shortly after and said I needed to come back for a CTscan. Then my nightmare began. My tumors are only in my liver so far so I am in chemo and praying it doesn't spread. Your story frame of mind with this horrible cancer is similar to mine. I'm still working full time, enjoying my five kids and three grandkids and prioritizing doing what I want to do. I still walk everyday and my Oncologist is surprised with my tolerance of treatment and my energy level.. Next week I start my 21st chemo cycle. Keep the faith and keep doing what you're doing. To me there's no other choice. ❤
my mother in law, passed away 10 days after ct scan her sign was weight loss, jaundice and edema, its very aggressive cancer she was in a lot of pain, so many brilliant minds and yet no one comes close to defeat this disease😢😢
One doesn't know how strong they are until they have to be STRONG. My 79 yr old mom was diagnosed Sept.2023. I am praying she will be able to pull through this.
Im sorry to hear this. My mum just got diagnosed and when the doctors say theres nothing that can be done , it killed me. Giving her only months. The feeling is horrible. Besides prayers. Can anyone please help with what to help her with ?
I have cholangiocarcinoma. I had no symptoms and I was stage 1. The cancer was discovered on an MRI that was done for a completely different reason. Thank you for spreading awareness.
@@corvus400 It was abdominal MRI with gadolinium. The targeted organ was the spleen. I’m extra lucky because when they went to do u/s guided core needle biopsy, the 3.6 cm tumor wasn’t visible at all. They were able to see it when they gave that IV contrast that is basically bubbles. I had a clean resection at University of Michigan last May.
Sorry to hear about your case but how are these videos helping anyone? Is someone benefiting from them monetarily? Have the videos recommended ways to AVOID these cancers? I mean...I'm trying to find out how we, the viewers, can benefit from them.
Hi Congrat! god bless you. My father had whipple surgery last month. He’s not able to eat anything. He can barely drink water. He probably has Gastroparesis. Did you experience that post surgery? Any tips on training your stomache to digest again? Intestine get rerouted during whipple surgery I think food going down can easily get trapped in the deadend side of the intestine.
Stephanie I lost my husband to cholangiocarcenoma on September 4. Thank you for doing this documentary. It’s important for this information to get out there. Gob bless you.
My husband was diagnosed with cholangiocarcinoma on 8/18/23 at 70 years old. He made 9 out of 12 chemo treatments. His body could no longer handle it. He had surgery on 2/8/24 in which they took 1/4 of his liver. Unfortunately, his cancer came back in 6/24. They are concerned how fast and how much it came back with having 6 new liver lesions. He just finished 8 radiation treatments. He will start in the clinic trial next week with immunotherapy and a cancer drug. Praying every day the new treatment will kill the cancer cells. Please pray for my husband. We have alot of life together to live.
He has been through so much. All of you have. If you are willing, update us. Sending a prayer and a hug. I lost my 69 year old brother a few months back.
My 60 yrs old dad had this , they offered him nothing and gave him 23 weeks he lived 22 then passed away peacefully in hospital, I can’t believe this is still not getting enough research carried out that’s why it’s so rare we need more funding to save people’s life. I pray you fight this and your journey isn’t like my dads, when he passed it was the worst day of my life.
They didn’t stage him, he was admitted to hospital when he turned yellow, they put stents in but the cancer grew so fast they blocked the stents, then they sent him home under the impression they would try a liver transplant but the cancer had already crossed the portal vein, so that was a no, he passed 7 weeks later. Our hearts broke and are still broken x
@@allisonoliver8223 Same happened to our grandmother, but she had stage 4 and passed away after 6 months - The biliary is even worst than pancreatic cancer and fast growing - 6 months seems the average period of life after diagnoses for the people that choose chemotherapy and the new bio medicines, sometimes is more sometimes less, but unfortunately not more than 2 years, really sad - But there are good news, because the new cancer vaccines based on the rmna technology, will be available soon, some before 2025 or max 2030
My mom had this cancer, started as jaundice and within 3.5 months she passed away nearly 12 years ago. Her last wish was to donate her body to science for testing this rare type of cancer. I just hope one day they can gather more information and help people in the future.
Hi Stephanie, reading through your vlog I could not just slide on by. I’m a 69 year old Scotsman, now living in Surrey England. I was diagnosed with stage 4 colon cancer in 2004. I had 8 years of ops and chemo, with scan after scan. I hear and read a lot of people mention things like ‘fight’ the cancer. My thinking told me to fight hard and try to do all I was told by my Professor and other specialist doctors. There are too many people who try to fight, then realising what you’re doing isn’t helping…. Possibly harming things. I do wish you a full recovery and, if power of thought is anything, you should know I’m thinking you can get through this awful mess called cancer. Peace and regards from Colin.
My mom was diagnosed with stage 4 cholangiocarcinoma in April 2024, at the age of 75, after complaining of abdominal pain. We fought and she fought, but sadly she succumbed two weeks ago on September 03, 2024. This diagnosis took us all by surprise, as she was completely without symptoms before, she was quite healthy and active. Her body responded very poorly to the chemo, and she also experienced hypercalcaemia of malignancy, which was what eventually took her life. This whole process has severely traumatized my family, my siblings and their families. We haven't done any counseling but it was heartrending to see how quickly mom deteriorated and was taken from us, we felt so powerless, and nothing seemed to work. I am sorry for sounding so negative, but it is hard to describe the loss we feel. My heart goes out anyone who has been afflicted by this horrendous type of cancer.
I lost my brother. Very similar to what you wrote, here. My condolences. Our folks have passed away, so 1st time losing a sibling, devastating. My heart goes out to you.
My dad passed away in 2004 and there was no information we could find. He did not receive chemo or radiation treatment and instead went straight into surgery. We had him for 6 months from the time of diagnosis. After he was out of ICU and in a room with 3 others who had the same cancer. No knowledge then of the biomarkers. All 4 passed away that year. One was a Dr. I had worked with and greatly admired. I am so grateful for this foundation and its research should anyone else have to live through this horrible disease.
I know 2 people who have had this. One passed away after a 2 year battle. The other is now in his 90s, more than 40 years since he was diagnosed. It wasn't easy, and there was a point where we all thought he may not recover, but he's still with us. His first symptom was jaundice and fortunately the cancer was found very swiftly and removed.
@@E.Cerulean I have no idea. I'm not an oncologist. All I can tell you is what his experience was and this happened 40 years ago. There's been many advances in treatments since then.
Thank you for this video . Im sorry to hear all of these stories. My mum just got diagnosed and when the doctors say theres nothing that can be done , it killed me. Giving her only months. The feeling is horrible. Im praying and hoping to find a way to help my mum. 🙏
my mom was 89 at her diagnosis Dr gave her 6 months she lived 6 weeks this was during covid and i can't explain the heart ache... she stayed home and my sisters and my aunt cared for her through the end ...with the hospice meds she did not suffer such an aggressive CA i miss her so very much😢😢😢
My husband who is 45 has just got this diagnosis 2 weeks ago. Unfortunately we didn’t have any warnings, no symptoms no signs,4 th stage spreaded to liver . Hoping some miracle will happen.
My husband of 53 yrs was discovered with this cancer in 4 stage n l lost him within 8 months. It was too soon only symptoms was slight weight loss n jaundice wh he got n got detected with stage 4 bile duct cancer. May God help a cure to be found at earliest
My father diagnosed on 25th feb 2024 by stage lV colangio carcinoma, he is on chemo + immune therapy but he is suffering very much. Pls god dont give this type of cancer to any body its very painful for both patient and the family also
Sounds so like my brother. Diagnosed late Oct 2023, died 5/4/24. Chemo almost killed him. He would have turned 70 on 6/8/24. I miss him terribly. This is a horrible cancer.
My father was diagnosed with this cancer 2 months ago. I wish sooner there will be a cure for this. I don’t want anyone to go through what are we going through right now.
Same here. My dad was diagnosed in October .They did nothing , Doctors kept him till yesterday and did surgery,they opened him and closed and did not touch anything, saying tumor is too big 😢 now saying about giving him a chemo ....Dont know what to think why waiting so long? Please share your experience 🙏
It was 8 years yesterday 10-15 that my husband lost his battle with this horrible cancer. He was diagnosed 10-28-2014. He had 2 drains put in the bring down the bilirubin. He tried chemo, first treatment, he got real sick with sepsis. Almost didn’t make it through the night. He got better with antibodies via IV at home. Tried chemo again when he was better, again became sepsis, ended up in ICU. At that point he said no more chemo, he felt it wasn’t worth getting so sick. He lived 8 months. He died 2 weeks short of a year from his initial diagnosis.
This is almost the exact same description of my brother's case. He was diagnosed Oct 2023. He had exactly the same about sepsis and chemo and IV anti biotic. It now is April of 2024 and he said I don't want anymore of this. I believe he will not be with us long. I'm so very sad to hear that not only is this rare cancer not so rare anymore, the catch up rate for successful treatments is not good. This Foundation is a blessing. Your brother's life through your work is helping so very many people. I pray that more also will happen with preventative measures and early detection. This disease is just heart breaking. If any bit of light can bring Hope, may that happen with the new options and people willing to stay positive in their journey. We all can help bring joy to each other. The cancer survivors I know talk about how they believe being positive in outlook is that extra tool for healing and living longer. If anyone reading this needs a boost, I am happy to reply and help cheer you on as you encounter this challenge. Like in the video Stephanie says, there is a VERY strong connection between mind and body. I believe that wholeheartedly. 🙏♥️🌈
God bless you stephenie❤ and thanke you stacie for the colangiocarcinoma foundation i spent hours reading about it when my mum diagnosed with it in the beginning of 2021, some doctors told us she only had 2 months...!!, but yet she's still with us until today...and we will keep fighting.... and please always seek for second opinion
My Mum had this cancer. She only lived 6 months after diagnosis. She had surgery which saved her life at the time. She went yellow and the itching drove Mum nuts. We had to cut her nails really short to save her making wounds. Her bilirubin was off the charts. They tried chemo but it didn’t work for her. It’s 20 years in November since she passed away. My sisters, myself and my daughter have all had issues with our gall bladder. My daughter and I have both had it removed. Mum had gall bladder problems before her diagnosis. RIP Mum. Love you and miss you always ❤❤❤The best of luck to you. ❤
My mom was 70. She was diagnosed stage 4...no treatment offered. Passed away 6 weeks later. Symptoms were nausea...weight loss...shoulder pain and began to get jaundiced
Mom had it. It took her life. She turned yellow.poor thing never had one cancer pill either. She was going to U of M cancer center. She passed the morning of her visit. I'm glad she's not suffering anymore. But can't help but miss her so very much. Bless all the people in the world who had it. We need better things fur all these cancers. I see about every famous people that passed. All with different cancers. This needs to be stopped . It's as important as getting ready to defend the country. Way way too many passing from this. I pray lots fur it to come 🙏🕊️♥️
I can’t even know what your going through- thank you, thank you & thank you for taking the time to post this video (yes, your son is amazing coping with all of this), I am going through the dr roundabout to try & diagnose what’s wrong with me & this video gives me great help and insight Just one question, if I may; what type of scan did you have & was it with or without contrast ?
My sister died from Cholangiocarcenoma in 2013, She had it for less than 10 months at the time of her death. There is a high risk I will get it to. I go 4 times per year for MRI
My mom at 70 yrs old found out she had cancer on 3/2/2024. After doing additional tests she found out on 4/3/2024 that she had Stage IV cholangiocarcinoma. She was told on 4/3/2024 that she had a year to live and the pursue getting chemotherapy. She never made it. The day that chemo was supposed to start her body started to fall apart (because cancer had consumed so many other organs). She died 56 days after finding out that she had cancer and a mere 24 days after hearing she had 1 year to live. This cancer is terrible. I feel for everyone else that has or will go through this with a loved one. Cancer is awful.
My sister in law died of this type of cancer. They gave her 6 to 7 months to live with chemotherapy and 2 to 3 months without it. She chose without chemotherapy...she died in 3 weeks.
I just dealt with a similar situation with my 70 yr old mom. She found out on 4/3/2024 that she had Stage 4. Went through all the tests and prep for chemo and she died 3.5 weeks after her diagnosis - never able to get chemo. I hope you have found some sort of peace. This is the worst thing i have ever dealt with.
I had my Gallbladder removed in 2023 and the perceiver caused a Stricture around my Bile Ducts and now I am n stage 2 cholangiocarcinoma. They tried to repair the damage but was unsuccessful. I am seeking help in a malpractice claim in NJ. Any advice on a good lawyer would be most appreciated.
My wife was diagnosed with stsge 4 on 5/18/2024. Her inly symptom was nerve pain in her right shoulder. The doctors believe it was swelling pushing her lung up into ger right side and pinching the nreves rhere. We took her for rotator cuff surgery a month before her diagnosis. They found a skight tear and repaired it. The pain didn't go away. A series of tests revealed later it was bile duct cancer.
How are you getting on...chemo? Surgery? God bless you what ever is happening or has happened. We are strangers, but prayers can come from anyone. I am thinking of you. Hoping you have people in your life that care about and for you. God bless you.
One of my best friends was diagnosed with this cancer. He was lucky in that he lived 8 years beyond his diagnosis given he responded well to various treatments and clinical trials. Ultimately, he ran out of treatments and was gone within 2 months. I’m thankful more was known about this cancer when he was diagnosed as it gave him more treatment options and prolonged his time with family and friends. Rest in peace, David. You are missed. 🤍
How did your loved ones pass away? Was it sepsis, hemorrhage or something else? My father was 85 when diagnosed. In August they figured out it was extra hepatic bile duct cancer (Cholangiocarcinoma). To differentiate it was extra hepatic (outside of liver). It was caught early and he was eligible for surgery because the mass was well-defined and had not spread beyond the bile duct. It was removed and he was up walking, eating and making progress. He then contracted Clostridium difficile which caused severe problems not related to the cancer.. He died a month after his operation due to the infection, not because of the cancer.
My sister was misdiagnosed. They told her it was pancreatic cancer . They thew the kitchen sink at it in terms of chemo. Come to find out it was duct bile cancer . She has pretty much given up . She stopped all treatment. Just found out last night it had spread to her perineum.. she cant eat hardly drink .pmease keep her in Prayer
I am so sorry about your sister. My father was diagnosed in June 2024 after yellow skin and eyes and pain in upper right abdomen. They took him into surgery 3 weeks ago after two rounds of chemo. When they opened him up, they found multiple lesions on his perineum and aborted surgery. He is having his third round of chemo now. Not sure about next steps, we will just have to wait and see.
My brother, 61, was diagnosed a year ago, stage 3. Tumor was 14cm. He is responding well. Tumor is 5cm. I’m hopeful, he’s doom and gloom. No pain, only chemo brain and tired. Any good news??
My wife was just diagnosed with bile duct cancer yesterday. Im so heartbroken. When going straight to surgery... is it the Whipple procedure? What to do... idk.
I have been diagnosed with 3rd stage cholangiocarcinoma a year ago. Am 45. I had all the mentioned symptoms before i had a surgery after billary drainage was done for about three weeks to stable my bilirubine level. I had the surgery to remove the tumor with bile duct line including the goal bladder and half of my liver. i completed chemo therapy given to me by pills called "capecitabine". So far the ct scans and the LFT tests shows no regenrating of the tumor. I am now having a continous bowl movement and Lots of gas specially at night. should i worry?
They live in many organs. We just don’t know it. And doctors do not look for it either. Their excuse is that we are not a 3rd world country. I say that parasites are not so picky.
I had Klatskins Tumor. Cholangiocarcinoma. Stage 4 terminal. I was sent from Reno VA to Stanford University and Dr Dua. 11 hour whipple, and I survived! This was in 2020. I still have a 2-17% chance of surviving 5 years. Still here!
Michael Landon died from this same type of cancer in 1992; or at least it was dealing with the bile duct. In 92, this type of cancer was something unheard of, at least that I know or found when I researched it.
Michael Landon had pancreatic cancer, not cholangiocarcinoma. However, what people here are saying reminds me of the outcome of people with pancreatic cancer.
Why can’t these stories tell how they were Feeling. How long it Actually took to get the right Diagnosis. Cuz if the CT scan looks ok then Doctors just think they are fine. No Follow up nothing. And you still know something isn’t right. And what it took for the doctor to finally believe you. And get the right test done. We need those stories. Cuz more ppl fight a Battle to get a Diagnosis more then anything. Unless it’s super obvious you have Some kinda cancer. But there are Cancer really hard to diagnose we need stories like that.
God, thank you for deliverance from evil and from wickedness. Thank you for safety. Thank you for protection. Thank you for rescue and thank you for keeping our hands clean and safe and busy. We bind idleness In Jesus mighty name. We bind idolatry In Jesus mighty name. We loose safety and the Lord Jesus mighty protection over Gods creation In Jesus mighty name. Amen 🙏 Thank you for healing the land and ground in your grace in Jesus mighty name. Amen 🙏 🤍
Maybe in 100 years we'll have Bile Duct repair hero's. We're at the mercy of this bunch, it's not close to acceptable. The product is poor that's the truth. I wouldn't donate $.05
I was diagnose of Collangiocarcinoma, last June 2023, and the Doctor says I should undergo operation, but I did 2nd option, I go to Life Extension Cubao in Quezon City , Philippine, and I meet Dr. Bernardino Ong of Life Extension, I said to him Doc here's all my laboratory but I don't want to go for operation, Dr Ong said to me, ok if that's your choice, ok, I will give you food supplements and I will diet you, I said , ok Doc, so He gave me all his prescription 10 kinds of food supplements of different effects and he diet me, . By just 8 months of diet and taking of 10 kinds of food supplements of Life Extension I have recovered and Thanks to God for there's a Life Extension Clinic in Cubao and for Dr. Bernardino Ong.and foremost to God .
@Ceerads But I'm not insulting I'm trying to show people and spread the message about how carnivore is helping to improve a lot of diseases or even reverse the symptoms.
@@Darrinnewlife When you’ve gone through all the education and hospital work in oncology and joined a team of cancer researchers at a reputable hospital, you can offer your “cures.” But even then, this diet will be considered bull.
I was diagnose of Collangiocarcinoma, last June 2023, and the Doctor says I should undergo operation, but I did 2nd option, I go to Life Extension Cubao in Quezon City , Philippine, and I meet Dr. Bernardino Ong of Life Extension, I said to him Doc here's all my laboratory but I don't want to go for operation, Dr Ong said to me, ok if that's your choice, ok, I will give you food supplements and I will diet you, I said , ok Doc, so He gave me all his prescription 10 kinds of food supplements of different effects and he diet me, . By just 8 months of diet and taking of 10 kinds of food supplements of Life Extension I have recovered and Thanks to God for there's a Life Extension Clinic in Cubao and for Dr. Bernardino Ong.and foremost to God .
I was diagnose of Collangiocarcinoma, last June 2023, and the Doctor says I should undergo operation, but I did 2nd option, I go to Life Extension Cubao in Quezon City , Philippine, and I meet Dr. Bernardino Ong of Life Extension, I said to him Doc here's all my laboratory but I don't want to go for operation, Dr Ong said to me, ok if that's your choice, ok, I will give you food supplements and I will diet you, I said , ok Doc, so He gave me all his prescription 10 kinds of food supplements of different effects and he diet me, . By just 8 months of diet and taking of 10 kinds of food supplements of Life Extension I have recovered and Thanks to God for there's a Life Extension Clinic in Cubao and for Dr. Bernardino Ong.and foremost to God .
My husband was diagnosed with stage 4 cholangiocarcenoma with his only symptoms being slight weight loss and nausea. His liver enzymes were NEVER abnormal. He fought like hell for 19 months and passed away 5 months ago. So much more research is greatly needed for this cancer. Thank you so much for this documentary. I knew it was rare, but I had no idea of the numbers.
So sorry for the loss of your husband I've lost my sister to cancer and my husband had his bladder removed due to cancer he is now scanned twice a year Cancer is so devastating to Watch your loved one suffer is heartbreaking 😢 sending you ❤ and 🙏 from Scotland
@assi2424 cancer certainly does not discriminate or care who it takes. I'm so sorry about your sister and thankful your husband has made it through. Prayers for his continued journey and blessings to you.
I'm so sorry for your loss 😢❤
@debyoder8342 thank you 💔
So sorry. I can’t imagine how you feel. I hope you have a good support system?
Thank you Stacie and family for founding The Cholangiocarcinoma Foundation. My husband was diagnosed with stage 4 and died 5 months later in 2011. He fought hard but did not really have a chance. God bless those who face this awful cancer for it totally rocks the family. ♥
I was just diagnosed with stage four cholangiocarcinoma in March of 2023. The only symptom I had was one night of severe pain in the upper right abdomen area. I went to urgent care the next morning and the Dr there ordered a ton of bloodworm and had me scheduled for a sonogram the next day. The imaging place called me back shortly after and said I needed to come back for a CTscan. Then my nightmare began. My tumors are only in my liver so far so I am in chemo and praying it doesn't spread. Your story frame of mind with this horrible cancer is similar to mine. I'm still working full time, enjoying my five kids and three grandkids and prioritizing doing what I want to do. I still walk everyday and my Oncologist is surprised with my tolerance of treatment and my energy level.. Next week I start my 21st chemo cycle. Keep the faith and keep doing what you're doing. To me there's no other choice. ❤
Keeping you and your family in my thoughts and prayers...I wish you all nothing but the best
The cancer is everywhere! My husband at young age and mother died from cancer. You are in my prayers Sally.
God bless you, God bless your life, your will to live. Prayers and a hug....
🙏🏻
my mother in law, passed away 10 days after ct scan her sign was weight loss, jaundice and edema, its very aggressive cancer
she was in a lot of pain, so many brilliant minds and yet no one comes close to defeat this disease😢😢
One doesn't know how strong they are until they have to be STRONG. My 79 yr old mom was diagnosed Sept.2023. I am praying she will be able to pull through this.
Give her noni juice
@@pampatriciae3937Idiotic.
Im sorry to hear this. My mum just got diagnosed and when the doctors say theres nothing that can be done , it killed me. Giving her only months. The feeling is horrible.
Besides prayers. Can anyone please help with what to help her with ?
🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻
@@AD-bq8nwu
I have cholangiocarcinoma. I had no symptoms and I was stage 1. The cancer was discovered on an MRI that was done for a completely different reason.
Thank you for spreading awareness.
Hi, thank you for sharing. May I ask, was it MRI of liver, also was it with iv contrast?
@@corvus400
It was abdominal MRI with gadolinium. The targeted organ was the spleen.
I’m extra lucky because when they went to do u/s guided core needle biopsy, the 3.6 cm tumor wasn’t visible at all. They were able to see it when they gave that IV contrast that is basically bubbles.
I had a clean resection at University of Michigan last May.
God bless you....🙏
Sorry to hear about your case but how are these videos helping anyone? Is someone benefiting from them monetarily? Have the videos recommended ways to AVOID these cancers? I mean...I'm trying to find out how we, the viewers, can benefit from them.
Hi Congrat! god bless you. My father had whipple surgery last month. He’s not able to eat anything. He can barely drink water. He probably has Gastroparesis. Did you experience that post surgery? Any tips on training your stomache to digest again? Intestine get rerouted during whipple surgery I think food going down can easily get trapped in the deadend side of the intestine.
Stephanie I lost my husband to cholangiocarcenoma on September 4. Thank you for doing this documentary. It’s important for this information to get out there. Gob bless you.
My husband was diagnosed with cholangiocarcinoma on 8/18/23 at 70 years old. He made 9 out of 12 chemo treatments. His body could no longer handle it. He had surgery on 2/8/24 in which they took 1/4 of his liver. Unfortunately, his cancer came back in 6/24. They are concerned how fast and how much it came back with having 6 new liver lesions. He just finished 8 radiation treatments. He will start in the clinic trial next week with immunotherapy and a cancer drug. Praying every day the new treatment will kill the cancer cells. Please pray for my husband. We have alot of life together to live.
Sending you love & hope from NZ ❤
I'm so sorry. My mom was diagnosed. How is your husband?
I'm sorry about that. Please try 5- or 7-day dry fasting before it's too late. The longer, the better.
How is he doing now?
He has been through so much. All of you have. If you are willing, update us. Sending a prayer and a hug. I lost my 69 year old brother a few months back.
My 60 yrs old dad had this , they offered him nothing and gave him 23 weeks he lived 22 then passed away peacefully in hospital, I can’t believe this is still not getting enough research carried out that’s why it’s so rare we need more funding to save people’s life. I pray you fight this and your journey isn’t like my dads, when he passed it was the worst day of my life.
What stage did your father have
They didn’t stage him, he was admitted to hospital when he turned yellow, they put stents in but the cancer grew so fast they blocked the stents, then they sent him home under the impression they would try a liver transplant but the cancer had already crossed the portal vein, so that was a no, he passed 7 weeks later. Our hearts broke and are still broken x
@@allisonoliver8223 Same happened to our grandmother, but she had stage 4 and passed away after 6 months - The biliary is even worst than pancreatic cancer and fast growing - 6 months seems the average period of life after diagnoses for the people that choose chemotherapy and the new bio medicines, sometimes is more sometimes less, but unfortunately not more than 2 years, really sad - But there are good news, because the new cancer vaccines based on the rmna technology, will be available soon, some before 2025 or max 2030
My mom had this cancer, started as jaundice and within 3.5 months she passed away nearly 12 years ago. Her last wish was to donate her body to science for testing this rare type of cancer. I just hope one day they can gather more information and help people in the future.
Hi Stephanie, reading through your vlog I could not just slide on by. I’m a 69 year old Scotsman, now living in Surrey England. I was diagnosed with stage 4 colon cancer in 2004. I had 8 years of ops and chemo, with scan after scan. I hear and read a lot of people mention things like ‘fight’ the cancer. My thinking told me to fight hard and try to do all I was told by my Professor and other specialist doctors. There are too many people who try to fight, then realising what you’re doing isn’t helping…. Possibly harming things. I do wish you a full recovery and, if power of thought is anything, you should know I’m thinking you can get through this awful mess called cancer. Peace and regards from Colin.
Amazing story !! 20 years after stage 4 is wonderful. bless you
My mom was diagnosed with stage 4 cholangiocarcinoma in April 2024, at the age of 75, after complaining of abdominal pain. We fought and she fought, but sadly she succumbed two weeks ago on September 03, 2024. This diagnosis took us all by surprise, as she was completely without symptoms before, she was quite healthy and active. Her body responded very poorly to the chemo, and she also experienced hypercalcaemia of malignancy, which was what eventually took her life. This whole process has severely traumatized my family, my siblings and their families. We haven't done any counseling but it was heartrending to see how quickly mom deteriorated and was taken from us, we felt so powerless, and nothing seemed to work. I am sorry for sounding so negative, but it is hard to describe the loss we feel. My heart goes out anyone who has been afflicted by this horrendous type of cancer.
I lost my brother. Very similar to what you wrote, here. My condolences. Our folks have passed away, so 1st time losing a sibling, devastating. My heart goes out to you.
@ Thank you. I am sorry for your loss. With the passing of time, may you and your family find strength and comfort.
My dad passed away in 2004 and there was no information we could find. He did not receive chemo or radiation treatment and instead went straight into surgery. We had him for 6 months from the time of diagnosis. After he was out of ICU and in a room with 3 others who had the same cancer. No knowledge then of the biomarkers. All 4 passed away that year. One was a Dr. I had worked with and greatly admired.
I am so grateful for this foundation and its research should anyone else have to live through this horrible disease.
I know 2 people who have had this. One passed away after a 2 year battle. The other is now in his 90s, more than 40 years since he was diagnosed. It wasn't easy, and there was a point where we all thought he may not recover, but he's still with us. His first symptom was jaundice and fortunately the cancer was found very swiftly and removed.
Removed with surgery?
@@E.Cerulean yes. A whipple procedure. No chemotherapy.
@@E.Cerulean He has a few digestive issues as a result but that only started when he turned 90. He is now 96.
@@warpedweft9004 Wow nice that he keeps going. Thank you. Is Chemo a bad idea ?
@@E.Cerulean I have no idea. I'm not an oncologist. All I can tell you is what his experience was and this happened 40 years ago. There's been many advances in treatments since then.
You are a shining example of what a human being should be.
Thank you for this video . Im sorry to hear all of these stories. My mum just got diagnosed and when the doctors say theres nothing that can be done , it killed me. Giving her only months. The feeling is horrible.
Im praying and hoping to find a way to help my mum. 🙏
my mom was 89 at her diagnosis Dr gave her 6 months she lived 6 weeks this was during covid and i can't explain the heart ache... she stayed home and my sisters and my aunt cared for her through the end ...with the hospice meds she did not suffer such an aggressive CA i miss her so very much😢😢😢
So sorry to hear this. God bless you and family 🤍 it truly is a horrible feeling.
My husband who is 45 has just got this diagnosis 2 weeks ago. Unfortunately we didn’t have any warnings, no symptoms no signs,4 th stage spreaded to liver . Hoping some miracle will happen.
So sorry to hear this , how utterly terrifying for you both - I hope you get your miracle too ❤🙏
@@hannahhopkinson9044 unfortunately I had to burry him 23 days ago. We had 32 days after our diagnosis.
Our friend was just diagnosed. He is 41.
@@hannahhopkinson9044 I became a widow. Today is his 37 days of demise. No miracle came for me .
@@beeshk2388 How is your friend now?
Great piece. Helps me understand cancer and cancer treatments better. My mom has bladder cancer, stage one thankfully.
My husband of 53 yrs was discovered with this cancer in 4 stage n l lost him within 8 months. It was too soon only symptoms was slight weight loss n jaundice wh he got n got detected with stage 4 bile duct cancer. May God help a cure to be found at earliest
Exact same for my brother. Diagnosed Late October 2023, died 5/4/24. Horrible disease.
My father diagnosed on 25th feb 2024 by stage lV colangio carcinoma, he is on chemo + immune therapy but he is suffering very much. Pls god dont give this type of cancer to any body its very painful for both patient and the family also
So sorry. Update ?
Sounds so like my brother. Diagnosed late Oct 2023, died 5/4/24. Chemo almost killed him. He would have turned 70 on 6/8/24. I miss him terribly. This is a horrible cancer.
My father was diagnosed with this cancer 2 months ago. I wish sooner there will be a cure for this. I don’t want anyone to go through what are we going through right now.
Same here. My dad was diagnosed in October .They did nothing , Doctors kept him till yesterday and did surgery,they opened him and closed and did not touch anything, saying tumor is too big 😢 now saying about giving him a chemo ....Dont know what to think why waiting so long?
Please share your experience 🙏
It's sad reading comments about lossing their love ones because of this cancer. 😞
It was 8 years yesterday 10-15 that my husband lost his battle with this horrible cancer. He was diagnosed 10-28-2014. He had 2 drains put in the bring down the bilirubin. He tried chemo, first treatment, he got real sick with sepsis. Almost didn’t make it through the night. He got better with antibodies via IV at home. Tried chemo again when he was better, again became sepsis, ended up in ICU. At that point he said no more chemo, he felt it wasn’t worth getting so sick. He lived 8 months. He died 2 weeks short of a year from his initial diagnosis.
This is almost the exact same description of my brother's case. He was diagnosed Oct 2023. He had exactly the same about sepsis and chemo and IV anti biotic. It now is April of 2024 and he said I don't want anymore of this. I believe he will not be with us long. I'm so very sad to hear that not only is this rare cancer not so rare anymore, the catch up rate for successful treatments is not good. This Foundation is a blessing. Your brother's life through your work is helping so very many people. I pray that more also will happen with preventative measures and early detection. This disease is just heart breaking. If any bit of light can bring Hope, may that happen with the new options and people willing to stay positive in their journey. We all can help bring joy to each other. The cancer survivors I know talk about how they believe being positive in outlook is that extra tool for healing and living longer. If anyone reading this needs a boost, I am happy to reply and help cheer you on as you encounter this challenge. Like in the video Stephanie says, there is a VERY strong connection between mind and body. I believe that wholeheartedly. 🙏♥️🌈
Stephanie~you are amazing. I hope you are well. ❤❤❤
God bless you stephenie❤ and thanke you stacie for the colangiocarcinoma foundation i spent hours reading about it when my mum diagnosed with it in the beginning of 2021, some doctors told us she only had 2 months...!!, but yet she's still with us until today...and we will keep fighting.... and please always seek for second opinion
Could you please kindly share what was the treatment? If you don"t mind, of course. And all the best! ❤
Lost my dad to bile duct cancer in 2016,he was 87 years young and I miss him so😢..he died within two weeks of his diagnosis.
So sorry for your loss. I also lost my dad in 2016 when he was 87.
Thank you and to you the same
My Mum had this cancer. She only lived 6 months after diagnosis. She had surgery which saved her life at the time. She went yellow and the itching drove Mum nuts. We had to cut her nails really short to save her making wounds. Her bilirubin was off the charts. They tried chemo but it didn’t work for her. It’s 20 years in November since she passed away. My sisters, myself and my daughter have all had issues with our gall bladder. My daughter and I have both had it removed. Mum had gall bladder problems before her diagnosis. RIP Mum. Love you and miss you always ❤❤❤The best of luck to you. ❤
God bless you and family . Its horrible, my mum just got diagnosed and the docs said theres nothing they can do .
@@AD-bq8nw I feel for you. The very best for you and your family. ❤️❤️❤️❤️
@@vickimarlene4905 thank you so nuch 🙏
My mom was 70. She was diagnosed stage 4...no treatment offered. Passed away 6 weeks later. Symptoms were nausea...weight loss...shoulder pain and began to get jaundiced
So sorry . God bless you 🤍
My deep condolences...❤😥🙏
Why no treatment offered?
@@Wafaasfitnessroutine stage 4. Too late unfortunately.
Mom had it. It took her life. She turned yellow.poor thing never had one cancer pill either. She was going to U of M cancer center. She passed the morning of her visit. I'm glad she's not suffering anymore. But can't help but miss her so very much. Bless all the people in the world who had it. We need better things fur all these cancers. I see about every famous people that passed. All with different cancers. This needs to be stopped . It's as important as getting ready to defend the country. Way way too many passing from this. I pray lots fur it to come 🙏🕊️♥️
You are a beautiful warrior stephanie.
My brother, not heavy, non-smoker/drinker, died about 4 weeks post-diagnosis. Prayers for research breakthroughs.
Same with my brother. Diagnosed late Oct 2023, died 5/4/24. So so sad. Terrible disease.
I can’t even know what your going through- thank you, thank you & thank you for taking the time to post this video (yes, your son is amazing coping with all of this), I am going through the dr roundabout to try & diagnose what’s wrong with me & this video gives me great help and insight
Just one question, if I may; what type of scan did you have & was it with or without contrast ?
Thank you so much for sharing this information xx
My husband died 3 weeks after diagnosis. It’s the worst disease you could imagine.
I'm so sorry...so devastating, this heartbreak. ❤
My condolences - My mom made it 3.5 weeks after her diagnosis. I completely identify. I hope you have found peace and comfort. I have not to date.
My sister died from Cholangiocarcenoma in 2013, She had it for less than 10 months at the time of her death. There is a high risk I will get it to. I go 4 times per year for MRI
My mom at 70 yrs old found out she had cancer on 3/2/2024. After doing additional tests she found out on 4/3/2024 that she had Stage IV cholangiocarcinoma. She was told on 4/3/2024 that she had a year to live and the pursue getting chemotherapy. She never made it. The day that chemo was supposed to start her body started to fall apart (because cancer had consumed so many other organs). She died 56 days after finding out that she had cancer and a mere 24 days after hearing she had 1 year to live. This cancer is terrible. I feel for everyone else that has or will go through this with a loved one. Cancer is awful.
It is terrible...
❤
My sister in law died of this type of cancer. They gave her 6 to 7 months to live with chemotherapy and 2 to 3 months without it. She chose without chemotherapy...she died in 3 weeks.
That is so sad 🥺 sorry to hear this. God bless you and family 🤍
😥♥️
I just dealt with a similar situation with my 70 yr old mom. She found out on 4/3/2024 that she had Stage 4. Went through all the tests and prep for chemo and she died 3.5 weeks after her diagnosis - never able to get chemo. I hope you have found some sort of peace. This is the worst thing i have ever dealt with.
What liver enzymes were elevated? What were your numbers? Thank You
I had my Gallbladder removed in 2023 and the perceiver caused a Stricture around my Bile Ducts and now I am n stage 2 cholangiocarcinoma. They tried to repair the damage but was unsuccessful. I am seeking help in a malpractice claim in NJ. Any advice on a good lawyer would be most appreciated.
My grandma passed from bile duct cancer. She was 90. I had never heard of it before her diagnosis.
We need genetic testing that identifies risk of disease so we can monitor risk and intervene early xx
Totally agree imagine the amount of lives that could be saved!!!
I have cholangiocarcinoma. I had genetic testing in the hopes that it might help my family but the test was completely negative.
My wife was diagnosed with stsge 4 on 5/18/2024. Her inly symptom was nerve pain in her right shoulder. The doctors believe it was swelling pushing her lung up into ger right side and pinching the nreves rhere.
We took her for rotator cuff surgery a month before her diagnosis. They found a skight tear and repaired it.
The pain didn't go away. A series of tests revealed later it was bile duct cancer.
Yesterday my doctor called me to inform my biopsy result.the result I had a bile duck cancer.now I’m so sad and stressed 😥
How are you doing Emily?
How are you getting on...chemo? Surgery? God bless you what ever is happening or has happened. We are strangers, but prayers can come from anyone. I am thinking of you. Hoping you have people in your life that care about and for you. God bless you.
She’s beautiful inside and out ❤
Is Dave able to tells what chemotherapy drugs and the duration of that part of his treatment? Thank you.
One of my best friends was diagnosed with this cancer. He was lucky in that he lived 8 years beyond his diagnosis given he responded well to various treatments and clinical trials. Ultimately, he ran out of treatments and was gone within 2 months. I’m thankful more was known about this cancer when he was diagnosed as it gave him more treatment options and prolonged his time with family and friends. Rest in peace, David. You are missed. 🤍
what stage did her have
Thank you for sharing
Just diagnosed.
😢🫶🏽🫶🏽🫶🏽 in my thoughts 🫶🏽
I hope you pull through 🫶🏾
❤
How are you?
Stay strong ❤
THANK YOU
How did your loved ones pass away? Was it sepsis, hemorrhage or something else?
My father was 85 when diagnosed. In August they figured out it was extra hepatic bile duct cancer (Cholangiocarcinoma). To differentiate it was extra hepatic (outside of liver).
It was caught early and he was eligible for surgery because the mass was well-defined and had not spread beyond the bile duct. It was removed and he was up walking, eating and making progress. He then contracted Clostridium difficile which caused severe problems not related to the cancer.. He died a month after his operation due to the infection, not because of the cancer.
My sister was misdiagnosed. They told her it was pancreatic cancer . They thew the kitchen sink at it in terms of chemo. Come to find out it was duct bile cancer . She has pretty much given up . She stopped all treatment. Just found out last night it had spread to her perineum.. she cant eat hardly drink .pmease keep her in Prayer
I’m sorry about your sister 🙏
I am so sorry about your sister. My father was diagnosed in June 2024 after yellow skin and eyes and pain in upper right abdomen. They took him into surgery 3 weeks ago after two rounds of chemo. When they opened him up, they found multiple lesions on his perineum and aborted surgery. He is having his third round of chemo now. Not sure about next steps, we will just have to wait and see.
@lyniereese1150 she passed away about 3 weeks ago. Thank you for your reply
@@whateverheather655 I am so sorry. Peace and love to you.
@@whateverheather655I send my heartfelt condolences. It is a horrible disease to remain hidden then attack so brutally with no chance to treat it.
My brother, 61, was diagnosed a year ago, stage 3. Tumor was 14cm. He is responding well. Tumor is 5cm.
I’m hopeful, he’s doom and gloom.
No pain, only chemo brain and tired.
Any good news??
Prayers for your brother. Hope he does great.
My father died of this type of cancer in 1976.
My uncle died of it. Dead within months of his diagnosis 😢
I'm so sorry!! God bless!
My wife was just diagnosed with bile duct cancer yesterday. Im so heartbroken. When going straight to surgery... is it the Whipple procedure? What to do... idk.
Stay strong ❤
My Stepmom died if this cancer as well 😢
I have been diagnosed with 3rd stage cholangiocarcinoma a year ago. Am 45. I had all the mentioned symptoms before i had a surgery after billary drainage was done for about three weeks to stable my bilirubine level. I had the surgery to remove the tumor with bile duct line including the goal bladder and half of my liver. i completed chemo therapy given to me by pills called "capecitabine". So far the ct scans and the LFT tests shows no regenrating of the tumor. I am now having a continous bowl movement and Lots of gas specially at night. should i worry?
Parasites lead to chronic inflammation of the bile ducts.
Interesting
They live in many organs. We just don’t know it. And doctors do not look for it either. Their excuse is that we are not a 3rd world country. I say that parasites are not so picky.
I had Klatskins Tumor. Cholangiocarcinoma.
Stage 4 terminal. I was sent from Reno VA to Stanford University and Dr Dua. 11 hour whipple, and I survived!
This was in 2020.
I still have a 2-17% chance of surviving 5 years. Still here!
Michael Landon died from this same type of cancer in 1992; or at least it was dealing with the bile duct.
In 92, this type of cancer was something unheard of, at least that I know or found when I researched it.
Michael Landon had pancreatic cancer, not cholangiocarcinoma. However, what people here are saying reminds me of the outcome of people with pancreatic cancer.
I've never understood why you have to have FDA approval for a treatment when you have a terminal illness.
Why can’t these stories tell how they were Feeling. How long it Actually took to get the right Diagnosis. Cuz if the CT scan looks ok then Doctors just think they are fine.
No Follow up nothing. And you still know something isn’t right.
And what it took for the doctor to finally believe you. And get the right test done.
We need those stories. Cuz more ppl fight a Battle to get a Diagnosis more then anything.
Unless it’s super obvious you have Some kinda cancer.
But there are Cancer really hard to diagnose we need stories like that.
Just curious....what is the purpose of these stories?
Prayers for complete healing in Jesus name!!
😢
God, thank you for deliverance from evil and from wickedness. Thank you for safety. Thank you for protection. Thank you for rescue and thank you for keeping our hands clean and safe and busy. We bind idleness In Jesus mighty name. We bind idolatry In Jesus mighty name. We loose safety and the Lord Jesus mighty protection over Gods creation In Jesus mighty name. Amen 🙏 Thank you for healing the land and ground in your grace in Jesus mighty name. Amen 🙏 🤍
❤
Maybe in 100 years we'll have Bile Duct repair hero's. We're at the mercy of this bunch, it's not close to acceptable. The product is poor that's the truth. I wouldn't donate $.05
I was diagnose of Collangiocarcinoma, last June 2023, and the Doctor says I should undergo operation, but I did 2nd option, I go to Life Extension Cubao in Quezon City , Philippine, and I meet Dr. Bernardino Ong of Life Extension, I said to him Doc here's all my laboratory but I don't want to go for operation, Dr Ong said to me, ok if that's your choice, ok, I will give you food supplements and I will diet you, I said , ok Doc, so He gave me all his prescription 10 kinds of food supplements of different effects and he diet me, . By just 8 months of diet and taking of 10 kinds of food supplements of Life Extension I have recovered and Thanks to God for there's a Life Extension Clinic in Cubao and for Dr. Bernardino Ong.and foremost to God .
Almost all cancers are found at a late stage. This early diagnosis is wishful thinking.
Well, breast cancers are often found early, as are melanomas. I bet there are other cancers found early.
The carnivore diet Dr.Ken Berry on TH-cam on cancer.
Please stop insulting our intelligence by offering these quack solutions.
@Ceerads But I'm not insulting I'm trying to show people and spread the message about how carnivore is helping to improve a lot of diseases or even reverse the symptoms.
I am vegetarian. Sorry. Not Sorry.
@@Darrinnewlife When you’ve gone through all the education and hospital work in oncology and joined a team of cancer researchers at a reputable hospital, you can offer your “cures.” But even then, this diet will be considered bull.
@ceerads what is the carnivore diet? My brother was recently diagnosed with this...
Are you still with us, hopefully
I was diagnose of Collangiocarcinoma, last June 2023, and the Doctor says I should undergo operation, but I did 2nd option, I go to Life Extension Cubao in Quezon City , Philippine, and I meet Dr. Bernardino Ong of Life Extension, I said to him Doc here's all my laboratory but I don't want to go for operation, Dr Ong said to me, ok if that's your choice, ok, I will give you food supplements and I will diet you, I said , ok Doc, so He gave me all his prescription 10 kinds of food supplements of different effects and he diet me, . By just 8 months of diet and taking of 10 kinds of food supplements of Life Extension I have recovered and Thanks to God for there's a Life Extension Clinic in Cubao and for Dr. Bernardino Ong.and foremost to God .
I was diagnose of Collangiocarcinoma, last June 2023, and the Doctor says I should undergo operation, but I did 2nd option, I go to Life Extension Cubao in Quezon City , Philippine, and I meet Dr. Bernardino Ong of Life Extension, I said to him Doc here's all my laboratory but I don't want to go for operation, Dr Ong said to me, ok if that's your choice, ok, I will give you food supplements and I will diet you, I said , ok Doc, so He gave me all his prescription 10 kinds of food supplements of different effects and he diet me, . By just 8 months of diet and taking of 10 kinds of food supplements of Life Extension I have recovered and Thanks to God for there's a Life Extension Clinic in Cubao and for Dr. Bernardino Ong.and foremost to God .