Interview with Bile Duct Cancer Survivor Lisa Craine

In this casual conversation, Lisa Craine discusses her journey as a person living with Bile Duct Cancer (cholangiocarcinoma).
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BOOKMARKS
02:35 - Life before diagnosis
08:06 - Diagnosis
10:00 - Treatment
13:15 - Ongoing follow-up and support

[@sung33kim]

Thank you Lisa. I'm in hospital had surgery 9 -15 -22 . I feel so alone , don't want to live any more no hope. Looking for something to help me then I found you. Thank you to listening you

[@gemum4219]

I was going to ask how you are doing. Was thinking of you.

[@balzoemg8415]

🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻

[@doyleenjones5070]

My sister went through this in 2013. I fill as if the doctor took her hope away. I always gave her all my attention and love. She struggled mentally and physically I stop my life just for her. Because she had no children of her own. Lisa this is a great thing you are doing because the doctors didn't give her any hope. I took her to Nashville for a case study but she was too far alone and there was nothing they could do. Her only support was me. She has been gone since 2014 and it is still hard for me because she was my only sister. This is a great thing you are doing because all this information was not out here when we went through our journey. If you going through this please embrace Lisa for giving her help and time to you and your family.

[@hasannasir215]

I was diagnosed with stage IV bile duct cancer this past April. This video really puts things in perspective for me. I’ve been saying for the past few months that I was in the fight of my life. Keep up the good work Lisa! 💪🏽

[@srijanasharma8525]

Hi, are you on any treatment?

[@noorfatima2242]

Hey..i want to ask you how are you now and are you doing ok now ?? My mom is suffering from this too .. i want to know about this

[@christinecolon5472]

I was diagnosed with bile duct cancer the beginning of May 2022. I had surgery the end of May that same year. The first rounds of chemotherapy did not work. The cancer has metastasized while I was doing chemotherapy. I am still doing chemo and I am sicker than a dog now. I have lost 84 pounds and I just want to be done with this. I am glad that you got treatment done and I hope you will live for a long time to come

[@noorfatima2242]

@@christinecolon5472 What's your stage when you get treatment??

[@christinecolon5472]

@@noorfatima2242 stage 2.

[@suezerangue4721]

Very grateful to have Lisa's words of wisdom on the Warriors support group and to hear her testimony in this personal interview. Bountiful love.

[@tongyingsun3071]

I am so grateful for your sharing about fighting deadly CC disease. I am a CC IV patient and have gone through first like chemo and radiation treatments. Unfortunately my tumor was not shrunk. I just started second line chemo plus immunotherapy a month ago. Hopefully this new treatment regimen will get a good result. My first medical oncologist also told me no cure for me. My family and I didn’t give up. More and more new drugs and treatments come up every year. That’s our hope

[@Sandro-qq4xb]

Hi! How are you now? I hope you're feeling much better today.

[@Sandro-qq4xb]

Also, how much does immunotherapy cost?

[@steviesteve1716]

Thank you my mother is going though this now

[@barbarameehan113]

Thank you Lisa. You are a Gift from God. Bless you.❤

[@fernemcallister6774]

Wow, she was lucky to not only have a doctor as a friend, but also to get tests done immediately. Most people have to wait for an appointment, then wait for tests.

[@kathelliott9539]

My CC journey is so very similar, thanks for sharing your story Lisa. Love your work 🙏🏻💕🐨

[@americanliver]

Hi Kath! We'd love to hear your story. If you'd like to share, the link to do so is here: liverfoundation.org/for-patients/share-your-story/

[@tanmayjoshi1128]

Hi Kath, my mother is recently diagnosed with the same. Would you be so kind to elaborate on your story or help with some kind of guidance? Thanks.

[@srijanasharma8525]

@@tanmayjoshi1128 how is your mother now?

[@kathrynseton1]

What a beautiful lady she is! Hers is definitely a story of hope. I felt that comment of hers; "I feel like I am on the Island of Misfit Toys," deep down in my soul!! I don't have cancer (a friend was just diagnosed with colangiocarcinoma, and I'll be passing this along to her for sure), but I do have some lesser lifelong health challenges, and it is absolutely TOUGH on some days! It is OK to admit that. If you have tough times, it doesn't mean you are weak. It just means you are HUMAN! Thank you to all of you on here who have shared your own tales of hope and resilience. You are amazing!! I don't know why bad things happen to such good people, but I know the silver lining is that we get a real glimpse of the truly remarkable strength and tenacity of the human spirit...something we ALL hold within us; if only we dig deep enough to find it. God bless all of you. I wish you and yours peace, hope, healing, and most of all JOY!!!❤❤❤

[@larrysimon1]

Thank you for your story of hope and success.

[@roxanam.rodriguez4694]

It's great to hear her experiences that can help so many patients and their families. And I agree with the comment of someone, doctors need to learn so much more and really care for his patiens..since Residency! I saw some residents at a hospital that were less than compassionate and plainly mediocre with cancer patients. Can't imagine what is the future of medicine! Keep the good work Lisa. And if a doctor doesn't seem right..fire him and find another opinion!!!

[@PeriodDrama]

My father has just been diagnosed with this. This woman’s story is inspirational but I fear for him, the cancer has also spread to his lymph node. I know nothing about cancer, I’m wondering if he stands a chance at all or if the fact it’s spread means it’s over. Man this is scary.

[@sung33kim]

Thank you. I'm going through a lot lately and I was debating not to do surgery or kimo . When my time to go I go than my daughter find out that I have Bile Duct cancer stage 3 ( calsonoma?..), she was shocked and cried how could you let it this long... I found mass on Liver in September 2021 ate spicy food, next day I was uncomfortably stomach pain and found the liver mass then on tests, Dr's, I didn't want nobody to know so I was watch out eating right food...today I'm going another test MRI for Abdman & Brain Drs don't know where to spread. my daughter takes me all the Dr's and test make sure I follow...I had a lots thoughts abot kimos or surgeries then first time I'm facing about my illness so I was looking for about Bile Duct through youtube? Then happened watch this "Oh my God! " my Jesus watch me over again ...listening this , gave me a strength. Thank you!!! I will follow what Dr's and my daughter tell me to do so (which is I haven't talked my daughter 6 years) Thank you for this program. Will helping me a lot . God bless you ! Sung kim

[@kittaalberts5797]

Hi My Husband has been diagnosed with bile duct cancer and we are in South Africa. We are 4 month in this and the drs are not in a hurry to do the operation. I feel so hopeless

[@anneliesevoelker2502]

My mom used vitamins. Something I don't do. She died in December 2016 from bile duct cancer. Her eating habits were poor, she rarely drank water, her skin was drying out. She open heart surgery in 2010 and had a mitrel valve replacement a mechanical not a pig valve. It happens so fast. I'm healthy and 51. Better shape than she was at my age.

[@charmainecregan6171]

Thank you Lisa -

[@joshineha13]

Need some details on the treatment options provided on the CC Stage IV, can you please help share more information. It will be super helpful.

[@shanehaerr1514]

I hope you are still doing well and surving. My wife is a 5 years survivor of stage 3a HER2 positive breast cancer, now last week she was diagnosed with intrahepatic cholangiocarcinoma. We didnt get stages yet but i am feeling its a 3 or 4. The mass is large originating in here left lobe but spread to the rest of her liver. It looks to be about 1/3 of her total liver at this point. She has had 6 months of nausea and morning bile regurgitation, but her doctors believed it was a symptom of her hormone therapy from the breast cancer. We started with tests about 7 weeks ago. Now that we have an official diagnosis we are looking at starting chemo in 2 weeks. Unfortunately we live on Maui and our medical system is way understaffed. We were told surgury was likely not an option. After hearing your story, I am going to try to talk to the surgeons on Oahu and mention your doctor up in Cleveland. Hopefully they have more options for us. Thankyou for your struggle and more importantly advocating, educating, and sharing.

[@babs1965]

Hepatic arterial infusion pump chemotherapy in patients with advanced intrahepatic cholangiocarcinoma confined to the liver

[@joanbaczek2575]

They found dialated bile ducts a year ago on ct scan , they tell me wendsday out of the blue and acted like I was told this a year ago! I have mri in 3 days!

[@patricialindleymccrae5042]

Lisa is such an inspiration. She's just an awesome person. I hope she continues to beat this disease and stays cancer-free. She is just amazing. I worked with Lisa and she was a wonderful lady then and still is.

[@bitemimimi5502]

Thanks Lisa this interview has been very important .I have just need diagnosed and iwould like to get contact with your group .

[@gemum4219]

What are the complications which typically and eventually are the causes of death for extrahepatic bile duct cancer?

[@little5bee]

Lisa is amazing....no victim mentality for her.

[@Hhopiuygv]

My husband is going through as well ❤

[@lindatemple937]

I’m just baffled. Started having severe pain just below my right rib area that lasted for a full month. Now I’m having severe pain in the upper abdomen radiating thru to my back and both shoulders and into my chest. And, gas and bloating of my abdomen. Had a CT with/without contrast. Only thing it showed was Ectasia of intrahapatic and common bile ducts. But, the doctors don’t want to address that. Can anyone tell me what or who do I need to see who WILL address this? Or, am I just making too much of it??? I’ve seen 2 different GI doctors. I also have an Autoimmune disorder called Sjogrens Syndrome with a couple of overlap diseases…

[@maureenmiller-delisle2505]

Get a second option

[@bekind5738]

Go to a major medical center and ask for Hepatic pancreatic doctor. Get copies of your CT scan(CD) and report. Also get copiesof your GI doctors reports

[@crystalo3550]

Please I know that you don't know me but I have been doing extreme searching on this subject and everything that I've found points to parasites they are the leading cause for bile cancer in the US they aren't familiar with parasite like they should be because they don't see them as a problem for the US they think only 3rd world countries have it well the veterans were stationed in the area during the war where the parasites that cause it was that place its very common and the #1 cause is the 2 parasites they call liver flukes cysts are cause by the mother parasite she lays up to 200 thousand eggs per day most are passed through feces however us doesn't have a main cause for bile cancer because they are naive they don't realize that this cancer is very common among the vet that were in those places during war not only can they travel through food people animals but also through water and air so if the main reason is these flukes over there an in us they don't know what main cause is make me wonder do they actually know just chemo makes them money they would be jobless people are curing themselves with a animal parasite medicine it's like 5 bucks u can research it and you can find on rumble please I urge you to get rumble truth is there I hope that you will take heed to what I say time is of essence and you have a better chance at healing yourself the sooner you do it there was a man given 3 months he was told to go home call hospice and out of him and 100 some patients he decided to take fenbendozole for dogs and he cured himself even if u don't have cancer that pain u feel do not ignore my sister boyfriend ignored it and now has cancer that spread through out his body he won't listen to me because I am not a Dr he trust the Dr to much and don't realize that Dr are ignorant and don't acknowledge that parasite are a global problem plus they need to feed their families and us knowing that parasite medicine working would mean that they will be without a job its not just in 3rd world countries I even stumbled upon a article that tried to go around it but was ultimately stating that parasite are the cause for aids to I strongly urge you to not let what im saying go in 1 ear out the other people are curing different types of cancer with parasite medicine if parasite can cause nightmares allergies anxiety and depression and list goes on they're the reason for the Gender disphoria because they cause mental illness they deplete u of all nutrients they even can get into the brain and unbelievable but can control your thoughts I know sounds wild but if u go on rumble an type in parasites u will and I believe you will see that I am right to many dots connect and continue to for me I hope you will listen to what I am saying and u will probably be laughed at by Dr's or they will not take u seriously because as I said they don't think of parasite being a problem here 1 Dr I listen to said while they were getting there degree or license they were told to not worry about parasites because they aren't a problem in us only 3rd world countries so u will have to push the issue and I would even go as far to say tell the Dr you believe u have liver flukes and believe it's becoming a problem for you and may lead to cancer if untreated if necessary tell them you have a family member who was just treated for them and u believe u may have been infected because u guys are very close drink from each other cups and sometimes even trying each other food don't be embarrassed it's your life on the line push and push they will do a routine blood work don't let that fool u they can stay undetected with the blood work they need to use microscopes to check your feces saliva they can misdiagnose them as cancer as well for me that is because they are parasite so make sure they don't just do blood work there was a lady told she had brain cancer they did a biopsy pulled back a part of her skull and found it was a parasite she didn't even have cancer

[@crystalo3550]

Autoimmune disease are also caused by parasite

[@arthurbalcita4851]

In the Orient, most common parasite involved is Clonorchis sinensis. By Amelia

[@maureenmiller-delisle2505]

What chemo where you on? I was just diagnosed with Cholangiocarcinoma April 10th starting radiation this month had a 6+ hour surgery for a liver resection April 10th unfortunately they couldn’t get all the margins due to mass was growing on hepatic artery! My surgeon was able to removed the intrahepatic ducts that were severely dilated due to the cancer I will do an oral chemo post radiation had bio markers for mutation done last week for other possible targeted treatments I was staged G2

[@Lee-sv8su]

My mother age 83 just diagnosed with it it is not possible to operate but the cancer is isolated she has been offered chemo not sure what to do or what her prognosis is

[@melk.175]

What is the name of her surgeon? I didnt see him listed at Cleveland clinic... thanks for anyone that can here this

[@satishvinayagam]

My wife is diagnosed with CC. She is only 32 years old. Is there anyway you could help.

[@RahulSingh-ss2zp]

Should I contact with you brother my mom is also diagnosed with that

[@vatsalshah3079]

@@RahulSingh-ss2zp Hi Rahul, can We connect once please as my mom also diagnosed with same ?

[@srijanasharma8525]

Please update about the CC

[@hrushikeshswain574]

My wife 's also same case now she is taking chemo at Odisha , kundly advice me what can I do ?

[@High_Travel]

​@@hrushikeshswain574now?kaise hai

[@g.wilson9533]

Thank you Lisa for sharing your story. Can I please have your email contac information? Thank you

[@MrGeorgewf]

Stool was pale? How long? Was it all the time or periodically.

[@samyukthamaddela8157]

can anyone suggest some therapies to know more about how it can be cured

[@beingbranded1264]

How to contact American liver foundation

[@americanliver]

You can visit www.liverfoundation.org to utilize live chat, email us at [e-mail], or call 1-800-GO-LIVER

[@tugzzcouncil485]

thats how i felt walking on a malll like i was alone

[@tirthkapasi9003]

Who was her doctor ....

[@ramssays4721]

Bile duct cancer dangerous or not ..?

[@lcool6183]

Extremely

[@isaacali8695]

Doctors are not God. They must not tell people how long they will live.

[@cyndidalakian6914]

My husband is having his liver resection for Intrahepatic Cholangiocarcinoma Monday. This video is giving me such hope. What an inspiration.

[@lcool6183]

I hope everything goes well! My mother got that done April 1st and is sadly still in the hospital and don't know the future for her. Sending prayers to you and ur family for his speedy recovery!

[@cyndidalakian6914]

@@lcool6183 My hubby had his surgery May 23. Hospitalized for 16 days. Rough recovery to say the least. Came home for a week and rushed him back to the hospital 6/13 with some setbacks. Most specifically, fluid in the lung. How is your mom?

[@lcool6183]

Cyndi Dalakian my mom is sadly declining and set to pass away today she has been in there since April 1st 😢

[@cyndidalakian6914]

@@lcool6183 Oh my heart is hugging yours. Please know you and your mom and family are in my prayers. I have no words. Just prayers.

[@ambicadua8326]

@cyndidalakian6914 hey Cyndi hows your husband doing? Was it a complete lobe resection or wedge?

[@OscarMPG1]

A loved one of mine was just diagnosed with Stage 4 Colangiocarcinoma. The doctors said Surgery and Radiation are out of the question. The only option is Chemotherapy. IT HASN'T spread to any other organs. the focus is palliative care. Someone out there please give me hope that my loved one can beat this and live.

[@MrMoss786]

Look up dr Thomas Seyfried approach

[@OscarMPG1]

@@MrMoss786 Too late. The loved one is gone.

[@MrMoss786]

@@OscarMPG1 I'm really sorry. My mum just got diagnosed with stage 4 gallbladder cancer.

[@cathie223]

A Red Sea Ready life-giving story with insights about options the emotional and physical preparedness offering hope as a loving and nurturing response. Thank you ALF for interviewing and sharing Lisa Craine’s story, as essential for patients and family to understand and learn more about CCA. Lisa’s willingness to offer assistance to help others a testimony of her Faithfulness to walk alongside others in their personal health care journey.

[@rmenzies]

Very impressive person, amazing story

[@polynikes3336]

Lisa is an angel

[@hortonc5996]

Most importantly Drs need to love their patients.. it re😢ally means the most when you have someone with the knowledge to help you and care deeply to help you.. the best Drs open their hearts!!

[@sunithakanuri441]

What is the stage of cancer? My father has stage 3 bile duct cancer

[@montecito12]

Thank you for your hope and encouragement.

[@rogerpeterson7581]

Wonderful video. I'm going to have surgery for cancer in my bile duct and the first section of my intestine. I appreciate this video.

[@TheSonglvr]

So how are you doing, Roger?

[@rogerpeterson7581]

@@TheSonglvr I go in for surgery Monday 10/24/2022. I'm not feeling too bad now but, up until a week ago I was very weak and just generally didn't feel good. Thank God that ended. Thanks you for asking.