Need Help/Advice! Time is running out.
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Dear Nick, my thoughts & very best wishes are with you & your family. I see you’ve only posted once, but I do hope you’re still checking in. We are all with you & caring for you & holding you close. You have become a member of our family with just that one post & we’d love to know how you are.
Please come back & post again.
Julia
Nick,
I am sorry to hear your story and can hear the desperation in your voice. One thing that stood out for me is this statement in your post:
“CTCA placed a bile bag on him to help drain the excess fluids but it does not work very well.”
This troubles me because if the drain is not working I think the doctors should be concerned about trying to figure out why. If you do some searching on this board you will see that people have a lot of problems with drains–they come undone, unstuck, move out of position and some were perhaps wrongly installed and so never worked from the get go. I think this may be something that another doctor and facility can look at. I don’t live near you but perhaps someone else on the board can suggest a doctor or facility.
Also, with regard to the ammonia levels, I thought that was also treatable, I think with lactulose? See the following post:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3454
At the very least, treating this would give you some more time with your father while he is lucid and I don’t think doctors should be denying him or his family of that.
Patty
Nick,
You are going through hell right now, and many of the people on this forum would be able to empathise with you.
If Dad was only diagnosed seven weeks ago you would still be in considerable shock. Unfortunatel because this terrible disease is often not diagnosed until it is very advanced then your story would not be an unusual one i’m afraid.
You are grieving, I’m still there for my Dad so I recognise the urgent grasp for a cure when sometimes that isn’t possible. Sometimes asking to resucitate isn’t the kindest thing to do either – Dad may be a fighter, but if the only alternative to passing was to keep going like this, would he want to live connected to a machine?
Getting hospice involved sounds like an excellent idea, they will be able to help Dad, yourself and your Mum come to terms with all of this, as well as working your way around what is best for everyone.I would also suggest getting a Social Worker on board too, he/she would be able to assist Mum with managing the mortgage and housing issues that she faces. This needs to be done as a priority, as becoming homeless on top of all this would only add to the problems. At least then you would be able to concentrate on Dad and whatever needs to happen there.
My heart goes out to you, but as others have said come back here often. we are all somewhere in the CC journey so we really do understand, and will be here for you.
Take care of yourself, and give yourself permission to grieve.Dear Nick,
I am so sorry for you and your family to be in this position with your darling Dad.
As the others have said, your Dad sounds very ,very sick and I think he needs to be either cared for in a hospice or if you have the suppport to maybe have hospice care in his own home.
The hospice staff will look after you as a whole family, focussing on comfort and dignity for your Dad. Realistically, ICU is not set up for that type of scenario….
Hoping you manage to find some support to enable you all to deal with the journey ahead of you.
Katie
Dear Nick – My prayers go out to you and your family. My husband just turned 58 and he has CC. I am so sorry that your dad is so ill and the doctors are of little help. Keep loving him, advocating for him, and respecting his wishes as you understand them. Touch him a lot, like massaging his arms, legs and back. There are many on this site who really know of your struggle and how difficult it is. Sometimes it feels so hopeless and other times there are rays of sunshine and hope. Just know that what really matters are our relationships with each other and my hope is that you know God well for there is so much peace to be found there. Blessings, Susan
Nick,
Welcome to the site. I am very sorry to hear of your father and what you are all going through right now. I know how tough this is to deal with and I went through this with my dad. I agree with what Lainy says in speaking with hospice care right now. My dad was in hospice care and I have nothing but good things to say about the care that he received from them. His comfort at this time was the highest priority and they did everything that they possibly could to ensure that he was as comfortable as possible.
We all know what you are going through right now Nick and we know how tough this is. So please, come back here as much as you want and we will all be here for you. We know and we care.
My best to you and your dad,
Gavin
Nick,
I am so very very sorry for what you are going through. My father was diagnosed in January with stage 4 and is also 59 so I can relate to the shock you are feeling. I am so sorry that it’s been such a short time for you, and that he is not doing well. I don’t have a lot to add to what others have said, however I do think hospice would do wonders to help you and your family cope. Please know that I (and so many others) are thinking and praying for you and your family. Spend as much time with your precious Dad as possible, and let him know how much you love him… I hope you can all find some peace in the days to come…. please continue to let us know how you and your father are doing.Hugs, thoughts and prayers coming your way…
Jen
Dearest Nick….my heart goes out to you and your family in this very difficult time. Nick, you must take comfort in knowing that you have done everything possible to help your Dad in the fight with this disease.
Your Dad knows that you love him and that you will do anything in your power to ease his burden with this disease by standing by him and making sure that he does not suffer. What better expression of love is there?
You might want to discuss with the physicians as to why they are urging you to consider the DNR. Then things will become clearer to you and your family.
Nothing is easy about this time in your life in fact; this is a situation in where we have to reach deep inside and muster every bit of strengths available. I have no doubt that you will be able to do so also.
My heart is with you,
Hugs
MarionHi there,I think your father is gravely ill and really your role at this point should be to help him go with dignity.The medical professionals would not want to resusitate a man in such a sick and frail state in the case of an arrest,that is terrible to imagine.An ICU is not the place for him or the rest of you.You have all been through a terrible time but now it is time to ensure your dad and family get care and comfort. Janet
Nick: Welcome to the site that no one really wants to join, myself included. Having said that, the only advice that I can give is to hang in there. My husband has CC and we have been fighting this battle for almost 3 years. When his doctors say “We can’t” I find myself asking “Why Not” or “What else can we do”?
Second and even third opinoins are sometimes necessary. Have you considers the Cancer Centers of America? I know they have a center somewhere near Chicago….or Mayo Clinic in Rochester? Being that your father seems to be in a somewhat critical situation, this may not be possible.
CC is a very evil cancer, and there are not a lot of doctors who have encountered a case of CC during their career. A ‘for instance’ is my husband Tom, he is the first known case of CC that his doctor’s in the Green Bay Wisconsin area have ever encountered. Before we started doctoring with them, his Veterans Administrations Oncologist gave him 6 months to live. We are almost in the 12th month of life. If we had listened to that Oncologist, surely Tom would be gone by now. But we didn’t listen and sought other opinoins and therefore we have had the past 11 months to build those memories. My husband was diagnosed at age 61.
It is very important that your father has someone in his corner to be an advocate for him. You (or someone) needs to be doing the research and asking the questions. Please do not accept evasive answers from his doctors, they need to share with his family exactly where he stands and why.
The worst part of this cancer is that it can hit a seemingly healthy person very quickly because it is a very hard cancer to detect and many times it is not diagnosed until it is too late. My husband was fortunate in that he was on a cholesteral lowering drugs and had blood work done every three months. In Jan 2008 his blood work was fine, and in March 2008, his liver enzymes were 10 times elevated. That was the first clue that something was wrong. In June 2008 he underwent a left resection – where they removed 3/4’s of his liver…and in Nov 2009 he presented with jaundice. New unresectable tumor in the remaining right biliary tree. Radiation and chemo zapped that one, however, now he has 5 new tumors and a mass in the pelvic area. More chemo now but he has had an external drain tube for the past 11 months, therefore keeping his color more normal.
As Lainy says, it may be time to call in Hospice if your father’s condition is as dire as it sounds. They will ensure that he does not suffer. My husband and I have discussed Hospice and we will rely on them when he gets to that point. I certainly do not want him to suffer. Sometimes there is just simply not anything left for the doctors to do. My husband’s son always says “Well they have to be able to do something” but he does not stop to realize that there are times when simply put, nothing more can be done.
Please accept my prayers for your father and for your family. My heart goes out to you. Spend as much time as possible with your dad, let him know that you love him, he needs to know that!
Go with God, my thoughts and prayers are with you.
Margaret
Hello Nick, and welcome to our wonderful family. What a sad turn of affairs and I do feel so very sorry for your family. Have you looked into Hospice? They will come and evaluate your dad and set him up at home with what ever he needs. They are wonderful. If they feel there is not a lot of time they may even take him right to their facility. Its a place to start and their main concern is his comfort. My husband is in Home Hospice and I cannot rave enough about them. It sounds like your dad did a good job in raising his family and I am sure he is very proud of you all. Sorry you had to find us, but glad you did. I am sure you will be getting some more “welcomes” here and please keep us posted.
Hello everyone,
My name is Nick and my father (Chris) was suddenly diagnosed with stage 4 cholangiocarcinoma about 7 weeks ago. The cancer has spread to his pancreas, lungs and has covered about 80% of his liver. So far he has been treated at about 5 different hospitals including CTCA in Zion Chicago and we are running out of time.
– He could only receive one round of chemo at CTCA due to the chance of his liver failing.
– He was tapped and drained of fluid buildup on two separate occasions. They usually drain anywhere from 2 to 4 liters off of his stomach.
– CTCA placed a bile bag on him to help drain the excess fluids but it does not work very well.We brought him home just two weeks ago from MCG hospital in Augusta, GA. He was awake, talkative (not confused) eating a little and seemed to be doing well but that only lasted for about 4 days then his condition got worse again. We had to rush him up to Emory hospital in Atlanta, GA because the doctors at MCG said nothing else could be done for him there.
Emory has been treating him for the past week in ICU. He is very bad shape and very confused due to his ammonia levels being at around 90. He sleeps about 20 hours a day. His breathing is very heavy and he cannot talk anymore. He can only grunt or squeeze your hand for a simple yes or no question. He also sleeps with his eyes wide open now which is really scary for my family to see. The doctors at Emory have him on 2 very strong blood pressure medications and some IV fluids. They are saying that is the only thing keeping him alive. They also said that his creatine levels are at 5.6 and that his kidneys are now starting to fail. The doctors at Emory say that they cannot do anything else for him. They keep trying to push us out the door because they do not want to have to do a full code on him. If they send him home this weekend he would surely die within two hours after his blood pressure medication runs out. We are doing our very best to fight for him but we do not know where else we could take him or what else we can do. It is like we are being painted into a corner as each day goes by. We are very sad and truly lost for words…..
My dad is a real tough guy and he wants to fight this to the end but the local doctors/hospitals either do not care to treat him further or have just simply run out of ways to treat him and keep pushing us to DNR if they get a full code on him.
He is only 59 years old. The kindest man you would ever meet and a loving father. He is the kind of guy that would give you the shirt off of his own back if you needed it. He never drank or smoked a single day in his life. All he ever did was work hard to provide for his family, and now just a couple months shy of his retirement from 35 years of hard work at the paper mill he gets the worst form of cancer ever and has only had about 6 weeks to fight it. My mom will probably have her home foreclosed on and have to sell everything off because she is retired and cannot afford the mortgage. All that they have worked so hard for in life will be lost
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