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(9 replies, posted in General Discussion)

Nancy, I am sorry to hear of Rons latest setback.  I have been waiting to hear how he did in New York, and you may not have a computer with you so when you read this I hope things are better. I am at eight years plus passed resection and  they were doing blood scans once a year, just as with Ron. I just don't believe once a year is enough, and today I went for a blood draw to at least check for skewed liver enzymes. My question is this... How does a long term survivor of this awful killer keep a vigilant watch for its return? There is no set process because it is rare to get, and even more rare to survive beyond 5 years. Is there anyone with a plan for this after 5 years of survivorship ? Nancy and Ron you are both in my prayers, Pat

Sharon, my name is Pat and I had a resection (60% removal) partial bile duct and gall bladder in January of 06' at that time I was told chemo is ineffective against this cancer (intrahepatic) my tumor was small and fortunately I am eight and a half years past diagnosis. I was told by my oncologist this past spring that in the eyes of medicine I am cured, and at this point I am in the care of my gastroenterologist, who I see annually and who now will order follow up blood scans. For the record, my oncologist told me I am cured. It can happen, I have had the best years of my life since that surgery, and I am grateful and humbled with each new day. You will never feel "out of the woods" just live each day, each week, each month, and maybe each year as it is your last. It is the ultimate reason to do "what you always wanted to do" , and I mean as soon as you feel well enough, do what you always did and more, eat healthy and hopefully you will get the results you are praying for. I wish you great results, Pat

Makua, I am sorry to hear of all your sons difficulties, I did take Marinol for two years, it does help with appetite, Drabinol is one of over 100 cannabinoids, compounds unique to the cannabis plant and the only compound known to medicine to affect the human appetite. While your son is in Colorado he may want to try Cheeba Chews, the CBD/ quad dose will get him settled.It is too bad we are so far behind in most states, good luck, Marinol is available in all states, but not as effective as marijuana, Best wishes for your son, Pat

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(10 replies, posted in Thought for the Day)

Marion, Gavin, Willow and Clare, I am happy to hear your thoughts and you are right and there is a lot in this world of ours that is not how we would wish it was. I know sharing my case and all I have is in hopes of others doing as well as I am. You should all be proud of what you have done with this site, I will try to continue to contribute and keep you all up to date, but I do take a break when it overwhelms me. For now I am doing well, I tried volunteering for a local cancer support group which I like, it was like applying for a job with a background check and all, ended up all they had for me was to distribute flyers for their main fundraiser. This was a little too invisible, and I felt I could make a bigger difference helping an old friend who had throat cancer, and had his larnyx removed and he did not drive. I was given medical power of attorney for him and for two years I drove him to all his appointments and spoke to his doctors for him, his radiation treatments required a mask to lock him in place, this caused him to have panic attacks during his treatments and he was truly afraid of the machine which is quite intimidating. I held his hand through all this and we beat his cancer. he was suddenly taken by an infection last year, and in recognition of all I did for her son, his mother gave me his prize possession an old convertible that had been in her garage for 28 years. I told her I would never sell it and I would remember him every time I touch it.People were making very large offers for this car, and this dear woman thought more of me and what I did for her son than any pile of money. Wow, every now and then selfless acts are rewarded. I love this sweet old woman and I have continued to help her til now. I show this car at local cruise ins, and I have taken her for rides in the car, and I know I have made her happy. These are the kind of distractions that have kept me from opening the laptop very often. When winter releases my area from its grip I will be out driving as well, so I will do what I can, Pat

5

(10 replies, posted in Thought for the Day)

Randi, Lainy, Darla, I don't know why god has chosen me to see and feel and Live what I have and I am not tempered by all this, I am no pillar of strength and I cry more now than when I was 6 months old. Life has made me aware and opened my eyes to the difficulties some must face. I try to share my triumphs and I hurt to read what this awful disease does to us. I am the little fish that escaped the whales mouth. I do not feel so happy as one would think. I feel for all the others, and I feel their pain.Life is a gift and a blessing,and every day is a miracle. It is hard for me to express the feelings I have for you all. Pat

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(10 replies, posted in Thought for the Day)

To all who post here and moderators, You are one of my many blessings. I am grateful to all of you for the information and support that have helped things go so well for me. I have been blessed with health, and my oncologist told me last week I am cured, I will not be seeing him anymore. It has been a journey that taught me about life and death, about happiness and sorrow, about small victories and big ones. It has been increasingly difficult to post about good news amongst so much sad news. My key to dealing with this has been to find a way to help others who need it, every day, to give myself in some random act of help or kindness with no reward intended. I hope to find a way to contribute in the future, but words and thoughts of encouragement have not flowed well lately and I almost don't remember the feeling of laying in a hospital bed. I have read more than written lately, and I hope for a way to contribute. i wish you all health and happiness, Pat

Sadly its true.... sugar is ingredient no. 1 in many things, I always said america runs on sugar and gasoline. I went to the oncologist this week and he took a blood scan and said all is well . Dan, these are u.s. numbers so I don't know if they even mean anything to you, and I am not bragging either, just to share the numbers with you, my bilirubin total is 0.2, albumin 4.4,Alkaline Phosphatase 64, he said by medical definition I am cured and cancer free, I am not a cancer patient but a resected liver patient with bilary restriction issues, I will no longer see my oncologist, but I will now be in the care of my gastrointestinal doctor for these issues. My CEA was 3.6, which is what it always is, the doc says it is slightly elevated because I smoke cannabis , and not to worry. As far as what not to eat, deep fried anything you are playing with powerful stuff. If I eat KFC I can poop over the house. No fish and chips, I went to a picnic and ate a bratwurst someone didn't cook through and wow. Here is the answer, COOK FOR YOURSELF. If you eat out or eat anything prepared by others, you don't know how it was handled, or mishandled which is easy, I purchase my ingredients and prepare virtually all my own food, eat what you enjoy and cooking is fun. sorry to go on, Pat

Danny, in the eight years I have been blessed with I have probably done it all, good, bad, ugly. Before cc I ate it all, greasy spicy anything and wash it down with beer, friends said my stomach is cast iron. Well when I learned of the presence of a tumor I changed my ways for a long while. I lost a third of my body weight, 239 lbs. to 160 in about 12 months time, including a piece of liver being removed. An infrequent beer is almost nothing. If one eats a stir fry done with cheap commercial oil it can cause a reaction from the liver. The reaction of my liver to something fatty is a burst of bile, with a straight pipe now connecting my liver to bile duct means right into the gut, no gall bladder any more to slow things down, and depending on a few variables I will see this in my next stool,yellow or diluted bile, looks like urine in the bowl. This is how I have learned my limits as to what the liver will tolerate. If I eat super healthy lean diet my digestion is textbook and you would not know I ever had a digestive disease. I have lived a good life after my cc, and every now and then it is alright to let the wind blow your hair a little bit. Bananas, eggs, roasted veggies,salads of all types, are liver friendly, oatmeal, farina, I use honey as a sweetener, I am not perfect but I know these are good, fresh oranges, apples cut up, common sense tells it all. I love bean soup, a salad, chicken made a thousand ways, enough? avoid processed sugar, it is the devil. Pat

Danny, hello to you and Martin. I too am a long term resection survivor and like Martin was, I have been doing remarkably well. The only problem I have had with the plumbing is last summer when I would have a beer or eat something greasy enough I was feeling mild pain in the liver area. I saw a my GI doc and he ordered a MRI of my bile ducts, which showed scar tissue build up around the bile duct at point of resection. I believe a bile duct is a delicate thing to sew back together, and with martin and myself it is truly a test of the skill of the person suturing a floppy tube the size of a drinking straw. We both have long surpassed the time this repair has to last most in most cases.My point of resection had bile duct restriction of scar tissue down to 3 mm where it should be 7 or 9 mm.One day it just seemed to clear itself and start working as it always had. I have lived one miracle after another and I don't know what to say. I read these boards and I see how things too often go, and I know I am blessed and I read these posts and I cry, I cry like a baby for all these good people for who things don't go so well. I cannot reply about chemo or any other treatment than a good surgery in time. I am sorry for this development, but do tell Martin I am praying for his return to an easier recovery.God Bless, Pat

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(2 replies, posted in Members' Cafe)

Dear Jen, I am sorry for the loss of your wonderful dad. Life is a temporary assignment and too many people live as if they are as sure as the sunrise. We are not, and when the time comes for us to move on what is left behind is most important. Your father left his mark on the world with you, and all his help with homework, time spent doing things for you and with you, that was his life project and he lives today through you. Your memory of him is only as strong as how he felt his love for you. Your memories are timeless treasures that make you stronger and more understanding of life's uncertainty.Value every day and invest in those children of yours to fulfill life's cycle with them.May god bless and take care, Pat

Lainy, congratulations on seeking companionship , as life is structured and best with a companion. You are a cc widow and you are able and deserve to escape the loneliness that comes with it. I hope you find the happiness we all seek. Sadly I have not sought companionship as I don't want to put anyone through what you have lived since losing teddy. You have dealt with it but that is pain that cannot be described. I always felt my cc would return so I chose to be a loner in that regard and its been tolerable, but I do get lonely and loneliness provokes thought and reflection, and a dog or two livens up your life a bit too. I asked god for love  last year and he gave me people who needed help. Go figure, so now I am too busy to find that which my heart tells me to avoid. I hope the new year brings you the health and happiness you deserve Lainy,    Pat

Hello Sweet green, I am sorry for your loss of your husband, I am a resected cc patient and recently an MRI indicated the site of  my bile duct resection is becoming restricted, and I questioned what to do,concerned this could be the beginning of it's return, the doctors all consulted one another, took a while and they came back with "it is scar tissue building up at the site of duct resection, if it becomes a problem, stent it." and he added, yours is a variety of cc that is "cyst like" I believe he said, and not to worry about it . ??Reading this article makes cystic bilary tumors worse than cc with equally bad survival numbers. I am very blessed in many ways, it seems my bile duct cleared itself, and I can eat chicken skin without pain if I wish (love it, can do a little ) So who knows ? If I had rushed to get a stent then they need bimonthly replacement and now you risk pancreatitis every time you get one.You are your own advocate and educate yourself and make your own decisions. I am the only one in my family with any symptoms of liver problems. I have not seen my onc since all of this, I am due in feb. sometime. Perhaps I will learn more then....best wishes, Pat

Marco, I knew a woman who I was a support person for had a liver resection, and upon her first scan, 90 days past surgery found another tumor, which her surgeon said he would go back in and remove. she was early fifties and it was hard on her to have healing tissue recut and resewn , the poor woman had a lot of pain and another tumor came a few months later, she chose hospice after trying chemo and being totally exhausted. This is a tough road and most surgeons only try this once. I hope you find a way, Pat

Danny, just a thought, in earlier posts you mentioned that Martin juices his fruit and such, that can give a healthy digestive tract a real challenge, the outcome is predictable. Maybe try more solid food and bananas, works for me, Pat

I am so sorry to read your sad news about jeff, my god bless you both, Pat

16

(7 replies, posted in General Discussion)

Sometime in late september ( I didnt write the exact date) I past my eighth year past diagnosis of intrahepatic cholangiocarcinoma, and I am not a health guru or anything like that, I live a ordinary life and the only thing that seems to have really saved me was early discovery and a slow growing tumor. I am blessed with a supportive family and I had a good job with excellent health insurance and many good doctors and a ultrasound technician that called the soft tissue tumor in my bile duct "possible cholangioccarcinoma " in her report, sending my doctors in the right direction right away.I had my liver and bile ducts resected in january of 06' so my message is things can go well, you are your own advocate, listen close when any doctor or nurse speaks to you. More importantly, listen to your body, it will let you know when thing aren't right. My life has been rather busy lately but I am doing well and my mantra lately has been to help others that life has overwhelmed. I hope to have more time for online activity this month and it is good to be back, Pat

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(15 replies, posted in General Discussion)

Hello all....It has been a while since I have even  opened the laptop, a dear friend passed in june and he was the only child of a 92 year old woman who has had a rough couple of months, she is the sweetest old gal I have ever known. It is sad when you out live all your family members and you feel alone and scared.She has church members and a few people who care, one younger sister and they try, but Kay was a loving mother who never gave up on a young man with addictions.I am trying to help her sell her home, put a life time of nick nacks on ebay, all with a story  and tears. We all hope for long lives with most our mind and body intact and functional, but the sadness of the eventual loneliness is not part of our wish. I have been there for her, cut her lawn, spent time looking for a  retirement home where she wont be so alone and have others to talk to and do things with. Life isn't fair but we can fight for what we feel it could be. I guess I could sum it all up by saying God gave me people to help. God bless you all, I'll be back, my bile duct restriction is scar tissue according to my surgeon, so when it becomes a problem he says stent it, Pat

Hello Dorien, It was 5 months between initial discovery of a tumor in my bile duct and surgery. It was still stage 1 when I was operated on so I would say my case was slow growing. I have read everything relevent to this cancer and one thing I read was a study linking coffee drinking to slowing the advance of most liver cancers. I drink 2 cups or more a day. Who knows what may affect the outcome but mine has remained in check for almost eight glorious years. One day hopefully medicine will figure out what triggers this errant growth and also what suppresses it.The human body is an amazing thing and they say every cell in the body replaces itself every thirty days. I believe it is this mechanism which goes wrong to form cancer. When a liver containing a tumor is surgically removed what is the blueprint for the body to regrow all those cells? And when the body regrows an assembly such as a liver lobe would this blueprint reform a tumor when reproducing what was there? I have many questions for my maker when I meet him, take care, Pat

Sandie, First I am so sorry for your setback in this battle. We live with this over our heads and we live our lives as purely as possible. There is no reason to apologize for your diagnosis, ever. How everyone deals with your condition is very complex, and most all the population has no idea what the inside of your shoes feel like. It's like a nuclear war is going on but nobody but you is affected. Keeping your cool is tough and only a select few understand your distress. This site has people who are familiar with this and we share your triumphs and setbacks. Don't ever worry about sharing what makes us all cry as we will cry and hurt with you. Hopefully knowing that makes you feel a little better. Please keep the strength you have shown til now and know I am hurting with you, Pat

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(34 replies, posted in General Discussion)

Its fun to laugh Moonpie but it is very important to listen to our bodies when  we are afflicted with any digestive disease and the end result of digestion is a key indicator when things are right or wrong.Don't stop looking, Pat

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(15 replies, posted in General Discussion)

My oncologist reviewed my MRI this week and says he doesnt like the look of it. They are going to run it by my surgeon who is no longer practicing surgeries but he is consulting or something. He says there is no nylon fitting where the ducts are rejoined. there is scar tissue or something (eek) growing and restricting the duct from 7 mm to 3 mm where it is repaired. Dr. Pelley says it is a major surgery to do anything with this. The jury is still out right now. I lost a dear freind this week who I had helped during his battle with throat cancer. I have been asked to give his eulogy and I have been inspired by the kind words I read on these boards. I will let you know when the man who saved my life once reviews the the disc and tells us his recommendation.   Pat

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(34 replies, posted in General Discussion)

If your stools are marbled with dark and tan have your horoscope checked.

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(34 replies, posted in General Discussion)

From now on, you can tell people you really know your s*** !

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(34 replies, posted in General Discussion)

Light colored stool is an early sign of bilary obstruction. A very lean diet with all fruit and vegetables and rice will give the same outcome so to speak.This has been my observation ...One time my stools were light tan for a week or more I panicked, called my oncologist, set up a scan right away and all was fine. stools are white after a scan, if you are paying attention, and this whole life of having cc hanging over your head makes you nervous about every little thing. good luck moonpie, Pat

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(15 replies, posted in General Discussion)

After my surgery while I had a piece of rubber tubing coming out of my side to a drain bag, when I was being prepared to go home the nurse yanked the tubing out and it pulled off this three way fitting that is designed to break off and become a two way fitting, that is what my onc. told me when I asked about it years ago, just thought someone would have some knowledge of this. Seems this sort of repair doesn't usually have to last so long most the time, scar tissue could also build up and restrict the junction perhaps ?