(1 replies, posted in General Discussion)

Sadly, the woman I have been sponsoring in New York has been told the pain in her stomach is cholangiocarcinoma which has spread to her stomach after what appeared to be a successful resection. My heart breaks for this dear woman, and her doctors don't seem very hopeful due to the aggressive return of her tumor. They have recommended palliative care. This disease has broken my heart again. I am beyond words to write.  I wish for some kind of cure someday, every case is different, everyone heals differently and gets different results, I just wish more did well, My best to all, Pat


(1 replies, posted in General Discussion)

The bile duct is an important little thing. It is the bodies sanitary sewer, it is a pathway for an important digestive enzyme critical for proper digestion of food. Both of these functions are vital, or required for long term health and virility. Most people never even think about their bile duct in their lifetime. It is not until something is not right in the bile duct that a doctor is consulted, and we then learn how important it is. I have made it a bit more than a year taking an anti inflammitory drug to control a restriction in my bile duct, and so far it has been working. If I miss my pill or forget it, I see a tan stool the next day or two, and upon taking the pill after missing it, I see a release of excess bile, then things seem fine again. An MRI a few years back showed scar tissue restriction at the point my bile duct was resected, this is where inflammation closes off my bile duct. For now I am able to put off a stent for an unknown time, and it seems to me the best way to go, and it is working.  I admire all the brave people on this board who have faced so much more difficult battles with this little body part. You are all heroes in figuring out how this little component works and how to fix it when it doesn't. I just want to share this simple solution to a problem that could have been treated in a much more difficult way with many possible side effects or new problems caused by the treatment. So as of today my bile duct seems to remain open and functions well as long as remember to take it, ( it is a medication that is very hard on your stomach, must be taken with food, and if not can cause a 'bleed out' as they call it, not good )  so there is no magic bullet but I hope something I have shared helps someone defer a stent for a while, take care,   Pat

Brigette, I am sorry how upsetting everything has been, I hope all goes well with your upcoming scan, take that wonderful dog for a walk on a pretty spring day, and try to be as upbeat as he / she is and live for the moment. Take that lab to the water with a tennis ball and all fun breaks loose. I wish you the best, Pat

Dear Elizabeth, first, I am sorry in so many ways for how everything went. This is an older person's cancer is what I was told, and 28 is certainly way too young. My path was very different, and my lucky breaks came one after another, I live in Cleveland, good for hospitals, bad for sports franchises, I was lucky to be referred to a surgeon who was one of the best, late in his career, had written 11 books on liver surgery and transplant. He was very good, I could understand him when he spoke, My hilar cc was found early, with a tumor that formed and grew in a very unusual  way. It created a back up of bile in the left side of my liver. This makes the liver degrade and become "sick" , discolored and mushy. The assistant surgeon , a resident I assume, told me the left half of my liver appeared this way. One of my lucky breaks was to only travel less than twenty miles to get to the hospital or to see a doctor. Alaska is beautiful, and he must have seen a lot of beautiful things to talk about at the end of each day. I am also sorry you only had 4 months.  Most stories don't go like mine, I was 49 and I healed well, experienced minimal pain, and I remember hating sleeping on my back for weeks, and how nice it was to sleep on my stomach again. You are right, a skilled hand is everything, and now, a little more than ten years past surgery, I am doing well, and for the most part sans a big scar that looks like the mercedes star, You would not know anything happened here. Once again, I am sorry for the loss of your Partner, God bless ,Pat

Scott, I know about doing what we love to do, in spite of health issues, it is not the port that may slow you down the most, you may feel less active when they begin to use it. Doing what you love  is key, it is what defines us. I would suggest an electric winch for the boat trailer with remote, a log splitter and  a wheeled cart for split wood, and perhaps a snow blower. It's not about exercise, it's about stamina and energy to go do things. If you don't feel like opening the laptop, you might not feel up to shoveling the drive either. Staying active is part of your great attitude, you are driven and motivated to move ahead, I admire and agree with that, however I would try to anticipate the fatigue the medications may cause. I use all of these items and still get a decent amount of exercise from them. good luck and keep moving, Pat


(351 replies, posted in Introductions!)

Matt, congratulations on your great results.  You have had such a ride and have come a long way, good for you, your guardian angel is doing great work, god bless you and your family, Pat

Hello all, I am sponsoring a 73 yr. old woman who was resected in December and still having pain in the stomach area. She had a blood clot in her lung after surgery and they had her on blood thinners since .  She recently made a smoothie with fruit and barley powder or something like that and had terrible pain shortly after. Her doctors are in disagreement on the length of time for her to be on blood thinners. She feels they are hard on her stomach and may be a big part of the problem. She has begun injecting her blood thinner medication and stopped the pills. She says her pain is constant, she has trouble sleeping  and her doctors do not seem very concerned and she is frustrated and asks me if it requires a trip to the emergency room to   get looked at, I told her I am not a doctor, but I would suggest seeing your gastrointestinal doctor, and perhaps get an endoscopy to look at that stomach, which she says had issues before surgery. She does not have a doctor guiding her through this, and we all know you can't just see you oncologist at the drop of a hat, She describes her abdominal pain as an electric shock going through her. She was stage 1 with no lymph or portal vein involvement. She was operated on at Sloan Kettering so it is a top hospital, I told her my go to man is my GI doctor and he has helped me understand and coordinate doctors and issues. Any thoughts on this pain that feels like a shock ? Maybe a suture poking a nerve? I feel for her, she is exhausted and just hoping for a good nights sleep. Mind you I was 49 yrs. old but at 14 weeks I was sleeping on my stomach and long free from pain medication. I hope to help her find some comfort, any thoughts would help, thanks...   Pat


(9 replies, posted in General Discussion)

Dear Nancy, I  was shocked to read about the return of Ron's cancer and even more of his passing.  It has helped me to realize you cannot be too cavalier about this terrible cancer. Ron knew that seven years is more than many have gotten, I am so sorry to hear his fight is over. God bless you and all of Ron's family,         Pat

Bridgitte, life changing  every day. When I was diagnosed, I was at peace with whatever is to come. Not the feeling of being sentenced to the gallows I had imagined such a diagnosis to be. My doctors all said, right up until surgery , it might not be cancer,  So after surgery and  pathology is done, they now will say the word and yes, diagnosis complete, I remained hopeful, positive, and it never really goes away from your mind, You have a plan B, hopefully you will never need to implement that. You  may heal well and not ever need another procedure of any kind, like me. You might be grateful if all goes well, and try to find a way to help someone who is having a harder time than you are dealing with an uncertain diagnosis that continues to take an uncertain path even after a successful surgery, so value and use every day you are blessed with, do the things you always wanted to, have fun and laugh and cry and live life. that is the secret, just live life if you have it,  it can go well,,    Pat


(3 replies, posted in Members' Cafe)

Scott, I like the Suburu commercials with the Golden retriever driving, the wife coming from the beauty shop, who thinks of this stuff?  The puppy in the carseat waking up...OMG

A  recent Time magazine article on the life of David Bowie mentions that he died of liver cancer. I wonder if he is another celebrity taken by cholangiocarcinoma ? Many news reports have mentioned he was taken by cancer, most don't  mention what type.  May god bless Ziggy stardust, Pat

It was ten years ago today I had my liver resection surgery ,  it doesn't seem so long ago yet it is.  I have lost both my Golden retrievers to time, both taken by canine cancer. I have lived so much since that day, felt much happiness , been witness to some sad and difficult things, My blessings are many, and on that winter day, when I was wheeled to the hall outside the operating room, they park you in the hall, in a quiet spot nearby, this must be prayer time or something, I never dreamed how my life would change that day, and You suddenly become an actor in a play that seems to be written as it goes along, so even the actors don't know how it ends. It is hard to condense it into a post. Part of living life is thinking about and being touched by death. Even when all is well, life begins and ends all around us, it is part of the balance of all things. I am still a student of it all, and I thank god every day for that. God bless you all, Pat

HI everyone, I have been around here a while, I try to be positive, and not dwell on that which irritates me, but here I go... I hate the commercials that are for a cancer hospital that seems to feed on those with little hope, If you do go to their website which boasts "look at our survival statistics " well yes, only for select cancers, not all. The highly advertised cancer hospital that seems more profitable than insurance. They have their own cable channel on my carrier and it just seems wrong or upsetting to me this never ending infomercial, some things don't need to be sold, if you are that good, people will seek YOU out.  There, I feel better now, I like this thread, Pat


(13 replies, posted in Members' Cafe)

Well Lainy, at least the Pack has a quarterback, he's an athlete and a competitor, With a good team around him. The Browns on the other hand are the sediment on the NFL basement floor, so I think your team is pretty good, just to make the playoffs is a great thing, At least Payton's team won, He is long overdue a championship, We still love football here in Cleveland, win or lose,  Pat

Lisa, I am sorry your husband is so uncomfortable. The emotions and crying happen, I don't know if it is the pain medication or what but I was teary and cried while in the hospital  and thereafter, perhaps it is the thoughts of our mortality that touch such a deep feelings, I never cried for anything before that...Maybe I had never had anything to cry about before that.  Focus on healing and eating if he can, It sounds like the surgery was a bit more aggressive  than mine was, try to make him smile when you can, remain positive and I am thinking of and praying for you both, God bless, Pat

Hello grsharp, I believe when they did my surgery they have a nurse waiting for the removal of the tumor to hand deliver it to the pathology lab while the operation is underway, I believe they decide how much liver to remove at the time the pathology results are sent back, which is right away of course. they remove the gall bladder, and nearby lymph also at this time, good luck, Pat


(16 replies, posted in Introductions!)

Hello Holly,  I  am sorry to hear you are one of us, but welcome, You have lived about as good a start as one can ask for. I hope and pray for your continued success. God bless, Pat


(16 replies, posted in General Discussion)

Oh Kris, I have thought about having to start fighting again, and I am sorry You are having to, I hope all goes well today, I hope your doctor has a plan for you, God bless, Pat


(17 replies, posted in Introductions!)

Hello Jack, I wish your wife the best on her scan,  I hope all goes well, Pat


(5 replies, posted in General Discussion)

Hello Mac, sorry to hear of your fathers difficult time.  There are many informative webinars on this site, so much to learn and know about every procedure. The bile duct is a sterile place in the body until your first ERCP , then and thereafter your bile duct is "inoculated " with bacteria from your stomach and intestine,  The skill of hand of the person doing this procedure is  everything, there is ( or was 10 years ago ) a 5% chance of pancreatitis resulting from the procedure, and he told me I would be hospitalized with diarrhea and vomiting for a few days. Also my doctor that explained my ERCP also likened the procedure to a video game as he is watching a video monitor overhead of the xray table I am on, he shoots dye ahead of the devise to help see it on monitor, he likened it to feeding a wire through a tree made of a  flimsy garden hose in a harsh gusting wind. As you breathe the whole bile duct and liver moves around as it is right under the diaghram muscle. I suggest you get him to a hospital before an infection takes hold. Find the best specialist you can to do the fix.God bless, Pat


(48 replies, posted in Introductions!)

Hazel,  hello, I am a post re section survivor, and I was told basically the same thing, there is no effective treatment for my cancer, he did offer me the option of getting the chemo if it helped me deal with it mentally, but recommended that I forgo chemo as it will just weaken my bodies defenses. I chose to forgo the treatment, and things have gone well. Don't panic due to this recommendation, it may work out well. You say her margins were clear, You trusted this doctor to cut you open and do things inside your abdomen, he performed a successful surgery and I am sure he, more than anyone else in the medical field, wants your case to go well.He did this operation and removed all the tissue scans showed. Do not panic or let emotions control you. Things can be fine just as they are, BELIEVE. Living in fear is a part of it.  Let's not kid ourselves, it will always be in the back of your mind from now on, especially before scans and doctor appointments. How you deal with the unknown is key.  Try to be positive, and speak and believe positive vibe when you are with your daughter, anxiety is as harmful to the immune system as chemo, so positive support is very important. I wish your daughter the best possible outcome, Pat


(13 replies, posted in Introductions!)

gsharp, welcome, I hope you find helpful info here. I believe many cholangiocarcinoma patients begin treatments without 100% confirmed diagnosis of cancer. My surgeon at the Cleveland clinic ordered and reviewed a CT scan and that seemed enough for him to go ahead with an early stage resection which was successful and curative. I wish you the best, Pat


(37 replies, posted in General Discussion)

Julie, congrats and just keep clicking your heels and think "there's no place like home" Pat


(37 replies, posted in General Discussion)

Good luck Julie ! Hope everything goes well, Pat


(13 replies, posted in Introductions!)

Hello Scott, hope you continue to maintain a positive attitude, and I would like to wish you and your family a warm, happy holiday season, I hope all goes well, Pat