Darla, Marion, Lainy, yes there are times it is not the right time to share all related experience, and part of a support discussion board does require being mindful of how some may interperate well meant words in a hurtful way, but also posting good news is not chest thumping, it is sharing sometime the most incredible and relieving news you could have gotten from a doctor, or anyone for that matter, They have opened the envelope, and the results are... you have won the lottery of life for 1 year.....unlimited breaths. You've GOT to tell someone.... right?

2

(48 replies, posted in Introductions!)

Aiste, good to hear he is happy and moving around, it is good he made a friend in there,stomach cancer, like all gastro-intestinal cancers, is hard to beat too. sounds like he's doing fine, God bless you all, every day will get better, Pat

Dear Julie,  I too have posted  about how it feels sharing milestones amongst some who do not fare as well. It is your good heart thinking of others feelings while you write. There is a reason we are here, a reason we come back to this site, it is because we want to give others facing the tough part of their journey hope. When I was reaching 5 years of survival, I tried to look beyond statistics and find a long term survivor, I asked my surgeon about how many long term survivors he had , he said he had many, this was just as privacy laws were being re-written in the states so he did not put any of us together at that time. I did not have this site then, and I never had that person with more time to share details of his/her survival with me. I did not know I would become what I wanted for others. So do not feel bad sharing victories dear Julie, let time go by and the good feeling overcome the uneasy ones when sharing good news. What would this site be like if all posts were from people who are sharing bad news?  Keep sharing, and don't let your good caring heart beat you up while you are doing it, take care...Pat

4

(48 replies, posted in Introductions!)

Aiste, I was a little concerned about his fever, thanks for letting us know it has come down. It is good he is eating, I was all liquids, and on day 3 at 3 a.m. I was awake and suddenly extremely hungry, so hungry I was uncomfortable, the kitchen was closed, the nurse was able to put together a small can of chicken noodle soup and a carton of white milk from the family waiting area, it was the best canned soup I ever ate, and I like canned chicken noodle soup ever since...lol... they would not give me solid food until the doctor said o.k.  seemed like in no time I was out of there yay! Back home with my dogs and my fireplace to relax by.... I am happy for all of you, hug that mother of yours, too much crying is not good for anyone, tell her Pat said all will be alright again soon,  keep me updated, Pat

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(48 replies, posted in Introductions!)

Aiste,  try to remain strong, sounds like mom and dad need you and your strength. When I was post op I did not know about liver enzymes and other details, I think the doctor doesn't want to complicate your mind with too many details, Just simply focus on healing and talk about what you all will do when the beautiful summer weather comes, try to avoid shop talk til the dust settles as they say, fill his mind with hopeful thoughts of what he wants to do after he gets better. Think of something you all can do as a family together and this will give his mind proper direction, talk about  favorite things you have done  and try to get his thoughts out of that hospital bed, I bet a well chosen topic can get all your minds off negative thoughts, for now the goal is to heal up and go home. Stay positive, we are pulling for you too, Pat

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(21 replies, posted in General Discussion)

Fred, good to hear the surgery went well... I hope all goes well from here, Pat

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(48 replies, posted in Introductions!)

Aiste, sounds like everything has gone perfectly so far, let's hope he's comfortable til he see's you, I will hope and pray for his continued success, Pat

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(48 replies, posted in Introductions!)

Aiste, I did very well after surgery, The surgeon was not sure if he would need to take a piece of intestine to make a section of bile duct if needed ( fortunately, he did not, he said he was able to move things around a little bit and made what was there reach. )  I was up and walking on day 3 and I went home on day 5 after surgery. One big difference is I was 49 at the time, so I was 25 years younger than he is, he may not be expected to heal as quickly as I did, but we can hope for results close to mine as you say he is healthy. The toughest thing about it is your stomach muscle is now cut and re-sewn together. That is probably the most uncomfortable thing about the recovery is the tender stomach for a while, sitting up to move and such.  He has you, which is huge also, my daughter looked after me and cooked and cleaned and helped me do as well as I did. Without her I am sure it would not have been so successful. Tell him be strong and everything can be as good as before. Best of luck to you both, Pat

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(48 replies, posted in Introductions!)

Dear Aiste,  most Cholangiocarcinoma patients are not definitively diagnosed until after surgery, usually  the tumor should not be disturbed until removal. Your father sounds like a very special man, and his condition is operable, which is huge. I wish you and your father the best possible results, god bless, Pat

Catherine , great news !  Good to know  chemo is effective against some variety of this awful disease, congratulations, Pat

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(21 replies, posted in General Discussion)

Fred, every cancer case is different in some way, the only thing that is always the same is that we call it cancer. That said I will share some things I remember leading up to my surgery. I remember being more excited than fearful about the operation, The surgeon explained to me the importance of the portal veins involvement with the tumor. My tumor was contained in the left hepatic duct and had not "grown through" the sides of the bile duct yet. the hepatic vein runs along the bile duct where it enters the liver about the same area the bile ducts come out. It is easy for this to turn into a big mass which is difficult to dissect and separate healthy from sick cells. I asked why remove half the liver if a tumor is in my bile duct? After my surgery he explained cancer is present in the bilary  tree within the liver like rust on the inside of steel pipes, hard to show me on a ct scan but seeing as there is a tumor further down the duct, it is presumed the liver is also involved, curative surgery requires removal of all possibly involved tissue. That means half the liver or more. Be positive, he's young, you found it earlier than most, pray, many prayed for me, it can't hurt. Try to help him find ways to relax, 10 minutes of quiet solitude a day,  It sounds like his chances are good for a positive outcome, best wishes to both of you, Pat

Julie, I too would like you to know your news is uplifting. Too often I read of  a setback rather than a success, we are with you!  Take each  miracle as they come, Live every day fully, In between stressful times, seek distractions that make you happy... your time is like a priceless family jewel, spread it around wisely and don't use your awake time worrying about what might be. May each year get better, Pat

Also Louie,  my C 19-9  was never more than 8 ever, not even right before surgery so I know this is not an accurate  indicator of the presence of a tumor or active cc in my system. Just like Kris's husband I went into surgery without a 100% assurance this was cancer, I figured so what, cancer or not, something is growing in my bile ducts blocking things up, it has to go. It is possible for it not to be so bad as you might imagine, I came home 5 days after surgery, I did not have any infections or complications, I went back to work , a maintenance job requiring moving around quite a bit, in just 10 weeks, My case went well, better than most I guess , perhaps because it was not so advanced. I was not diagnosed until after surgery as well so cancer or not, something is growing in his bile duct that is blocking things up. I know it's easy to say but don't be afraid, It can go well.  God bless, Pat

14

(4 replies, posted in General Discussion)

Daisy, I am sorry that competition between different hospital systems is slowing your process of making a plan. I was diagnosed in one major hospital network, and the doctor that performed my ERCP referred me to a surgeon in the other major hospital system than his own, citing this doctor as "the best" , all the cd's of my ultrasounds, and medical record could not be read by the other hospitals computers, requiring duplication of all tests, however it all went quickly once the plan was made. good luck, Pat

Louie, when I had an ERCP  they did a brushing of the tumor in my bile duct, (Hilar CC ) and the brushings came back as a type of cyst like cells, and the doctor that performed the ERCP said often the outer cells are not but the inner cells of the tumor are cc , and he recommended having 60% of my liver removed. I did and when they did their testing on the tissues removed from my bile duct they came back positive, intrahepatic tumor was in fact, cancerous in the center, and another cell type on the outside. I believed him and proceded with the surgery as quickly as I could arrange it. they cannot disturb a tumor in the bile duct or if it was somehow opened up it is like a dandillion in a breeze, a recipe for the spread of this terrible disease. Prompt action paid off and as it turned out, I have remained cancer free for more than 9 years . I wish you  and your husband the best, Pat

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(24 replies, posted in Introductions!)

Melinda, awesome news on your husbands clean scan.... and may all your issues go well, I am sorry his religious values keep him from using anything that may help him, even where it is considered legal for certain medical patients, cannabis still has a shadow over its use for many.... he doesn't have to grow his hair long and wear tiedyed  t shirts to use it anymore. I wish you both continued success and may god bless, Pat

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(12 replies, posted in Introductions!)

Fred, I was fortunate to have a tumor discovered in my left hepatic duct (right where it emerges from the liver) and had resection surgery Jan. 06' at which time my oncologist felt chemo was not effective for my case,  so my only treatment was surgery by a skilled surgeon called the best liver man in the area by my gastrointestinal doctor. He had written numerous books on liver surgery and transplantation, he is now retired and hopefully you can find a man with great experience in this field. I am able to do everything I did before diagnosis other than lift heavy objects. I am blessed in many ways, other than a big ugly scar that resembles a mercedes benz emblem that spans my abdomen you might not know anything ever happened here. Hope for the best, your son is young for a cc patient, hopefully he will heal well and have positive results as I have.  Use common sense, eat healthy , avoid chemical solvents and toxic atmospheres, fatty foods make the liver work, I avoided them before surgery. I know it is difficult, but try to avoid stress, that is my treatment and advice in a nutshell, I hope your son does well, God bless, Pat

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(12 replies, posted in Introductions!)

Fred, welcome , there are many here who understand your fear, I for one was diagnosed at 49, which I felt at the time was too young. That was over nine years ago, and medicine is making huge strides on many cancers. Keep the faith, hope for the best, one challenge at a time, don't be overwhelmed  by it all, and be his key support person. He will be in my prayers tonight, Pat

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(24 replies, posted in Introductions!)

Melinda, welcome to this site, I am not able to advise you on chemo brain, I have had a 60% liver resection and the stress of the first few scans, that was nine years ago , I was not as well informed as you, and at the point you are  I had not yet found this site. The first year I remained hopefully uninformed, come 10 months I did some research and was very disappointed with the numbers that I found. My doctors at that time, in my case, advised against chemo. I experienced appetite problems, sleep cycle problems, and some stress as a scan neared. Pain medication constipated me right after I came home, I used cannabis for pain, for appetite, and as an added bonus it helped me sleep and it helped me not think about the stressful things. If you have a hobby, cannabis helps you get lost in what you are doing, lowering stress even more. Stay busy, if you have a dog, walk him or play with him or her, be positive, seek happiness anyway you can, go to a museum or a show, stay busy and seek relaxing atmospheres and surroundings. I see you are in California so medical cannabis shouldn't be a problem. Some preliminary studies show cannabis may have positive effects in slowing or stopping the advance of cholangiocarcinoma . However you deal with it, I wish you the best. There are many on this site with experience with chemo, good luck, Pat

20

(6 replies, posted in Members' Cafe)

Lainy,  crowd behavior can be rude. Impatience and greed are two things that irritate me about the human race.  I took Gary to a rock concert he wanted to see, the usher led us to our seat as people are rushing about in the 15 minutes before the show,it took a moment to get him from his wheelchair into his seat, a wall of people , the fist few saw us and stopped in the aisle and the group behind couldn't see us and just pushed the crowd into us. For a moment I almost went off, and then, all at once the crowd stopped and all at once woke up to the fact someone is having a difficult time and stop a moment for them. Sometimes people don't think and just go on automatic with brain on 'pause' rather than "play' , and we all can be there. Having a friend like Gary opens my eyes to the shortcomings of human behavior, and it helps me to be aware of others that are unable to keep up with the flow in a crowd. Helping Gary proves to him he is not so alone, we can do things we used to,and I will make this happen. This man was gifted with being alive, it shouldn't be a miserable time,and friends and family are what tip the balance of life. What comes from it is as wonderful a friendship life can give you. take care, Pat

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(6 replies, posted in Members' Cafe)

Lainy, it is hard to imagine a day in the shoes of a handicapped person, how they deal with daily challenges. One time , while we were out, Gary said "More than anything I miss going out fishing for perch on lake Erie." I have given much thought to those words, and I have found fishing rods for the handicapped online than have a battery and a little motor than winds in the fish when you depress a trigger. One of my goals for this year is to get Gary back out there catching fish ! We used to go fishing all the time, and it will be a challenge getting him on a boat and out there, I am sure I could get one of his sons to help me make this thought a reality that would make my dear friend happy, I know it. That is what makes life worth living.... Pat

22

(6 replies, posted in Members' Cafe)

Oh Lainy, I have said it before, life is not fair.A dear friend of mine fell off a roof while attempting to repair christmas lights on his home. He nearly died, his family looked on helplessly as he clung to life through that holiday season they all struggled with the thought of dad being gone. He did make it, after 10 years of surgery, rehabilitation, therapy, he is paralyzed on his left side, blind in his left eye, challenged every day, with ghost pain from his shattered nervous system, life is is unpredictable. I help my friend when I can, I take him out once a month to lunch and anything he wants afterward. I spent last fathers day with  Gary and his three sons, his wife, and his mother. This family has so much love and faith and a positive outlook it is wonderful. It doesn't have to be cancer that changes your life forever. He is still here and living life, we were childhood friends , and as difficult as every day is, he cherishes his old friends that think of him. I enjoy getting him out of his house which he is pretty much confined to while his wife is at work. If you want to feel unspoken love and appreciation help a friend who quietly needs you. They are out there if you look I would bet, the reward can be an incredible feeling , better than drugs or alcohol. So be kind to a deserving friend, it can be addictive,Pat

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

Nancy, congrats on 5 years !   When I first read about cc and it's stats I was upset to say the least, and statistics stopped at 5 years and the numbers were not very encouraging. I didn't find this site until I was a six year plus survivor. I have learned so much about this disease, and how blessed we are to have somewhere to talk about concerns. Keep celebrating those milestones ( My liver was resected 9 years ago Jan. 26 ) only once though, you are a trooper, Keep that great attitude,  Pat

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(23 replies, posted in General Discussion)

Sandie, may your trip be filled with beauty and perfect weather, enjoy ....you deserve it,  Pat

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(2 replies, posted in Thought for the Day)

Duke, thats beautiful, Thanks for sharing  that one, it's "rich", Pat