hercules
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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
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
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
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
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
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
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
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
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
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
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
