(4 replies, posted in General Discussion)

Brigitte, you don't have to wait 3 months to be told so, I will tell you right now, You are one of us, You are a survivor, right now today. You will be one from now on. Don't ever for a minute think otherwise, You are now living the rest of your life, You must believe that, scans only confirm what you already know. Don't let this disease hold you hostage, do what you can when you can, and set a goal to move on, go back to your life, it will happen. God bless, Pat

Good news Greg! Hope your success continues many years ! There has been a flurry of good news lately, ride the wave, live your life, god bless,Pat

Deb, great news on mike, good for you both. The first scans seem to be the scariest, and they get less stressful with each one, May your success continue many years, god bless, Pat

Kathy, congrats on 5 years !  I read somewhere that at 5 years medicine considers you 'cured', You probably don't feel like it still getting scans and all, My doctor drew blood and scanned in january and just drew blood for testing in july , one scan a year now and at 7 years they will tell you no more yearly scans, which I don't miss, they did an MRI the last time I was imaged, they said the MRI gives a more detailed look at the bile duct.  At this point, scar tissue in the bile duct is to be monitored as this becomes a bigger factor as you become a longer term survivor. Once again Kathy,  big woo hoo to  you, take care, Pat


(5 replies, posted in Good News / What's Working)

Thank you Lainy, ten years can really sneak up on you !   ha!  I loved your Albert Einstein quote, Learn from yesterday, live for today, and hope for tomorrow..and most of all, never stop asking questions, try to learn something new every day, No one knows everything, not even Albert Einstein, So try to be a perpetual student of life. and be well dear Lainy, Pat


(5 replies, posted in Good News / What's Working)

Hello everyone, today is the tenth anniversary of the discovery of my intrhepatic (hilar) tumor. I had abdominal pain after an evening of deep fried chicken wings and draft beer, prompting a visit to my doctor. He said textbook gallbladder problem and ordered an ultrasound and drew blood. a week later I heard him mention cholangiocarcinoma, only to later find the ultrasound technician took the time to write a report on this intrahepatic neoplasm and called it "suspected cholangiocarcinoma " a hard few words for any medical professional to ignore. The doctor that ordered the ultrasound doubted this possibility, but recommended that I see a specialist.  The specialist had an even better idea of how rarely this comes along, and honestly doubted it to be cc . He ordered an ERCP to be done, which they took a scraping of cells on the exterior of the tumor, being careful to not disturb the tumor too much. The cell scraping was reported to be "cyst like cells, more like a polyp cell" he said, he added often there are these cells on the outside often and cancer cells inside. He referred a surgeon who he called "the best" , sounded like the man for me, dr. Henderson at the cleveland clinic . I contacted his office, and the system there was quick and efficient, things moved quickly, initial consult, cat scan, second visit, pre op tests, I had my liver resection surgery 1/26/06 and all went well, I went home on day 5 and became constipated by pain meds, and began using high grade cannabis for pain, and sleep . I went through many scans and blood tests for many years, all has gone well, one small lump along my scar about the size of a quarter. The past few years I have had bilary restriction issues at the site the bile duct was sewn together, it builds scar tissue inside becoming smaller as time goes on. I also have PSC so my bile duct has a scar like condition throughout, and it becomes inflamed at times, and I see light stools and dark urine and I know things aren't moving right. It may be small bile stones restricting and then passing, or it may be the duct becoming inflamed, I take a anti-inflammatory drug for my bad shoulder called Meloxicam, it seems to open my bile duct up and keep things flowing well so far. I would be sure, anyone considering a stent in their bile duct consider anti inflammatory  drugs before going for a stent. I have followed many cases on this board, especially long term survivors like 32 coupe , Bob had 16 years I believe when he last posted and he was having problems with a stent being clogged and infection . In the long run not just a re-occurrence can bring us down. I have been in control of my case for a while now, I believe a stent is a desparate act to open up a bile duct, I hope for continued success and just reading stories and going back years and following what others have done can educate you about what works. I believe the whole problem begins with irritation and inflammation and scarring condition in the tissues where liver bile flows and sits. I am a retired mechanic, not a doctor, but there is relevence and I always try to figure things out that go wrong. Theories can be right or wrong, but these doctors seem to have many. All of us are a little different but many things are the same. My advise to anyone dealing with this disease is keep a level head, don't let your emotions run you. listen to your doctors, don't see just one. Two heads are always better than one. Take care of yourself, eat well, get your rest, avoid stress. Even if you never had cc, this is a recipe for a longer life, take care, Pat      P.S.    woo hoo


(11 replies, posted in Good News / What's Working)

Lisa, Congratulations on five years!  With stage four no less, you truly have beaten the odds. I hope the next five are easier, god bless, Pat

Well Aiste, my Gastroenterologist sent me a text yesterday, he was able to look up the date of the ultrasound that first revealed the presence of a soft tissue tumor in my left hepatic bile duct. the technical date of the beginning of my journey. September 21, 2005. I am afraid to tell you how long I asked God for, it was much less than I have gotten. I had no information other than what my doctors told me. I remember early on they assured me it was very unlikely this was a rare cancer, a fraction of 1 percent, don't worry. I never dreamed 10 years would be such a winning of the best gift I ever could have gotten, better than any riches I can imagine. Set your hopes high, and you can beat the toughest odds. I will post again in about 12 days, take care, Pat

Well Aiste. I asked my doctor ( a few have retired )  to look up the date the ultrasound was done, as most records require a bit of looking, it would be fun to know the exact day, my gastrointerologist said he will look it up. I think it is the last week of september but it may be the first week of Oct. Maybe I will go out to dinner somewhere special, or have a small party with my grown children. I don't want to overdo it, but it is wonderful to be here, thanks, and take care , Pat

Oh Duke, farewells are what I struggle with most, I hope you can make as big a difference on the other side as you have here, I am sure you will and I will see you there, I hope you have kept some strength for yourself as you have given so much to so many, Peace, Pat


(7 replies, posted in Introductions!)

Hello Scott,  Thank you for sharing your story, mine has similarities and differences, I was 49 when diagnosed,  I have PSC  and no colitis. My tumor was smaller, left hepatic duct ( hilar ) the tumor was contained within the bile duct, everyone seems so up on there facts, I didn't pay attention to details like tumor size, to be truthful. That was almost ten years ago, I didn't have a discussion board, or even anyone who had this cancer to talk to, so other than my doctors ( my primary care physician's mother died of cc so he was familiar with it )   My doctors recommended no chemo, so I have had no treatment other than surgery, Lots of scans and blood draws over the years, all clear, and other than bilary restriction issues from PSC and resected bile duct site, I have had no issues, no stenting, and my case is easy street compared to most, but listen to your doctors, your fate is truly in their hands and they want you to beat this. Waiting is hard, I waited 5 months from tumor discovery to surgery. 47 is too young , just as 49 was, my children were on their own ( I had my kids early ) so they would have gotten by without me ,  so I didn't have that to stress me while dealing with it. It is easy to say and hard to do, but find a relaxing place to go that is interesting and distracting like a museum or zoo. Good luck, Pat  Also Scott, I am hurt and saddened that your wife and family have been so robbed by that heartless greedy man. I saw that story on "American Greed " and I was appalled, not even knowing how many people he hurt. I am so sorry are the only words I have, and let's be thankful he was caught, my heart breaks for you and your children, try to be strong for them, Pat

Thank you Marion , I help an elderly woman, and with all these privacy  laws in place, doctors don't seem to know what they can tell a caregiver, some worse than others, mostly when you are new to an office. A limited p.o.a. , just to help keep things straight, not make any decisions seems what I need. This will help us understand the process, thanks again, Pat


(51 replies, posted in General Discussion)

Dear Chucks daughter, I am sorry for the latest turn in your father's battle. He is a strong willed man who is blessed with a great deductive mind. He has made a difference here for many diagnosed with this awful disease. Tell him Pat from Bay Village said hello and thank you for all your spirited help on this board. He will NEVER be forgotten, thank you, Pat

I see there hasn't been a thought for the day in a while...this is an old joke but you all may enjoy it or perhaps it will brighten your day a tich... the parts of the body began to argue amongst themselves and decided there should be a "boss" amongst them to be in charge of the rest... The brain spoke up and said "I control all the rest of you so I am the obvious choice for boss " then the eyes spoke up and said " we see the way for all of you, without us, you would be done...then the stomach chimed in.."without me you would not have energy to do anything...I power you all...then the sphincter chimed in and said" I dispose of all the waste from all of you, I should be boss"... well, all the parts of the body laughed at the sphincter, so disgusted, the sphincter closed up...soon the brain became foggy and confused, the stomach became ill, the eyes became crossed, and all the parts of the body agreed the sphincter should be boss. The moral of the story is....you don't have to be a brain to be boss..........just a sphincter...........ha     Pat

Jessica,  although they seem to be more common as time goes on,  young cc patients seem to be more common today than ten years ago, it is still quite infrequent. I was 49 when diagnosed and operated on. It happens, and usually without symptoms until later stages. I was fortunate, in the words of my surgeon, my tumor "manifested itself in a way that produced early symptoms" , your tumor was found during pathology tests after transplant, both cases incredible strokes of luck. Early diagnosis is a key element to long term survival. May your good fortune continue,  Pat

Jean,  this topic is rather controversial as to chemo or not to chemo.  My case was similar ( hilar tumor in left hepatic duct, resection of left lobe, 1/3 right lobe,gall bladder and partial duct resection, clear margins and no lymph involvement ) My doctors recommended no chemo. I chose follow their advise. I am about 10 weeks shy of my 10 year anniversary of chemo free, cancer free life since discovery of my tumor . I have supported others with this cancer, none did well, all did chemotherapy. One woman, 32 years old with a two year old daughter, died within 24 hours of contracting an infection from her chemo port. This disease can break my heart even when someone has done well. I have told my story many times but everyone is different as their fingerprint. I am sure there are those that did well with chemo, and many will support it, listen to your doctor, he wants you to win if the outcome so far is this amazing. Sounds like your mother has gotten a huge miracle on this one, congratulations, Pat

Cathy,  how wonderful !  Good for you! I hope all is well, enjoy every sunrise and the day that follows...God bless,    Pat


(91 replies, posted in Introductions!)

Dear Aiste, I haven't been seeing any recent posts, and I feared his bile leakage was why, oh I am saddened by this news, I am sorry for all of you. I am at a loss for words, I will pray for you all, Pat


(7 replies, posted in General Discussion)

Marion, I haven't felt as though,I haven't checked, and when I was checked in at the doctor's office, they did not mention it being elevated, realize I have been living with this for a while, and honestly I didn't think I would last this long. I have had a few people suggesting just get it fixed, and it is true I am enduring more pain and discomfort by not doing it,so I guess it is time. I much prefer being a visitor or an advocate at the hospital than a patient. Oh well .... better start taking care of this body, I may need it for a while yet,  Pat


(238 replies, posted in Introductions!)

Excellent news Matt, Good luck with everything, Pat


(7 replies, posted in General Discussion)

Well Marion, just 48 hours of anti-inflammitory medication (maloxicam) taken for my bad shoulder and the bile duct is opened up enough for me to see a burst of bile again after drinking 2 beers. I feel better too, I wonder how many people in a similar position with the same symptoms, went right to a specialist that might miss the connection, or any doctor not having all the facts about their issues elsewhere in the body, and just stent an inflammed bile duct , which would have difficulty even with a stent in place. I am a mechanic, I diagnose and repair things, wow  am I impressed with the man that figured this out, How many people got a stent for an inflammation, I wonder. I would have gone in for a stent if that was the initial proposal to open things back up. I have read here for a while and this is new to me. I hope this helps someone before someone jumps to the next step. take care, Pat


(7 replies, posted in General Discussion)

Upon seeing my general practitioner regarding light colored stools and he reminded me of the last time this happened I also complained of extreme pain from my left shoulder joint which is completely worn out. By rights I should have a complete shoulder replacement. I dread another major surgery. The last time I had an MRI the radiologist mentioned "I can't believe he is not screaming about his left shoulder". When the MRI tech. mentioned this to me. I replied, "who do I scream to? " My shoulder is in a state of inflammation, which sends off some kind of distress hormone that triggers inflammations to light up all over the body, especially in locations of former trauma and scar tissue. He wrote me a 10 day supply of an anti inflammitory  med. and my shoulder felt better and my stools went back to normal coloring.So who would think my bile duct restriction was caused by that? Thank god for well informed, smart doctors...Pat


(91 replies, posted in Introductions!)

I  have a news flash for you Aiste, there are doctors here also that will not talk straight when speaking to the patient, never mind his family or advocate,  just ask Duke. Selecting a doctor or hospital is a big part of the outcome, where ever you are. Part of it is Luck of the draw, a great doctors flawless work can be damaged by a nurse or other staff. Doctors can have egos that are bigger than the hospital they work in. The surgeon I had was a leader,  a teacher of other doctors,and the project supervisor for this whole job. He was the man in charge, and you could read respect (and fear) in the actions and words of the nurses. They would not do anything without his nod. This was ten years ago, the process worked in my case. Sadly the economics surrounding my case are probably quite different than your father's. I had medical insurance as part of my job's pay, it was one of my blessings as I could freely choose my doctors and even now I can , if and when needed, seek treatment anywhere many on these boards have. You seek answers I did not have when I was where your father is. You are all amazingly well informed compared to my family and myself 9 yrs. ago. It is hard for me to understand the process but communication is important. The computer is a great tool, It helps us find information and more, People study this disease , as you have, and in some ways by what you say and by the nature of your questions,you intimidate the doctor making him want to be quiet and recheck his own info. consider that, scary, Pat


(91 replies, posted in Introductions!)

Aiste, I am sorry to hear about his bilary leakage, this location where the bile duct is rejoined together is perhaps the toughest part of this surgery. My point of bile duct resection is built up with scar tissue which eventually restricts the flow of bile within the bile duct. I have been witnessing lighter and lighter stools, for a few weeks, this has happened before and I am hoping for it to change back as before. Pain too and I do my stretching and I massage the area hoping to get things moving a little, I hope to avoid a stent as long as possible, I am not jaundiced yet but I see this condition on and off. hopefully it will subside . The excitement never ends and this bile leak could explain your fathers temperature fluctuation. Let's pray this too subsides and functions better, he is moving around and walking some, this helps get everything moving a little. You are all in my thoughts and prayers, Pat

My, your mother's case sure moved along  quickly it seems, I don't know how long all the tests you mentioned took to do, I was almost 5 months from finding a tumor to surgery. I hope all goes well, there are a few recent resection patients posting lately, and all, including your mother, sound promising. I wish you continued success,  Pat