October 2, 2007 at 7:16 pm #17167saraMember
My heart goes out to you all. Cholangiocarcinoma is such a nasty, and dismal cancer that it’s so difficult to build hope, much less maintain it as you go in for each visit with the doctor. Just try and remember that doctors are presenting their most reasoned opinion based upon median survival data. Like Amilcar said above, the disease is unpredictable, and not likely to adhere to median prognosis statistics. Doctors do their best based on the facts they have before them, but it doesn’t necessarily mean that the facts will apply universally to every case. Try and keep that in mind as you maintain your hope.
Big hugs to you all.October 2, 2007 at 6:57 pm #17166sandy-blakeMember
My heart goes out to you. My husbands Dr. told us the chemo would be devastating and not much help. The only thing I kept hearing from all of his Dr.s was how rare this cancer is, and difficult to diagnose. I’m from Delaware, but I consulted John Hopkins and was told the same thing. I had nine different Drs. on his case, and we had hope to the very end, but this is such a vicious cancer that nothing worked.
I will keep you and John is my thoughts, because I know the pain you are going through. If there is any advice I could give you – it would be to love him as much as you can, be with him as much as you can, and keep him as comfortable as you can because CC is a painful cancer.
You are in my thoughts and prayers.
SandyOctober 2, 2007 at 2:05 pm #17165celoiParticipant
Hello Charlene and Amilcar,
My father has been battling this disease since June 05. The drs gave up on him at that time. They attempted resection in Aug 05 and the dr came out of surgery and said, it will not work. I can’t tell you when he will die, but eventually. I wanted to tell him, so will you!
We started doing independent alternative things and he went back to the doctor Dec 05 and one dr said, oh you are still alive. THEN they suggested chemo, THEN they wanted to put their hands in it to help him!
Whenever he goes to a new dr, they say you survive this good for 1 year, whatever you are doing, keep doing it. Its been 2 years.
One dr said, you have gall bladder cancer recently. he doesn’t have a gall bladder. The gall bladder was removed in 05, and free of cancer!
Many drs are just ignorant. They don’t know EVERYTHING, contrary to popular belief. Thats why they themselves die!
Basically, this disease is rare and we need to just put our heads together, stay positive and try what we can that is working, in conjunction to some “positive” things some drs are doing, to fight this disease.
Don’t be discourage by what drs say, every case from what I have observe is different. Keep fighting and ask many questions of everyone.
celoiOctober 2, 2007 at 5:27 am #17164amilcarParticipant
Hi Charlene – I am really learning as we go and one thing has become very clear. This disease is so rare and unpredictable that most doctors tend to err in the pessimistic side and often seem to be somewhat cold and give little hope. My dad has been given terrible prognosis from every doctor he’s seen and I think it has hit him very hard. I also think many, if not most doctors, have very little experience with CC unless they work in a specialized center and their analyses are seldom convincing or detailed enough.
It is so consuming to be always expecting the unexpected and trying to develop patterns and predictions. This can consume the caregivers and the patients as well.
I feel the same sense of frustration and some days I deal better with the ambiguity than others. I have learned however to take things a day at a time.
I wish I could be more helpful but perhaps knowing you are not alone will be of some consolation.
AmilcarOctober 2, 2007 at 1:19 am #736fairydropMember
John had another biopsy and the tumors are from his cholangio. The Dr. was upset when he told us, which was really bad for John. He basically acted like it was all over for us.
I try so hard to keep his spirits up and then some idiot Dr. says something like that.
I’m so mad I could spit. Also I did some research on the chemo regemin the Dr. said would be VERY MILD, and the side effects can be horrible.
I don’t know if it’s just the Drs. here or has anyone else had these types of problems with getting accurate info?
We see the oncologist on the 9th and I’m going to take a print out of the side effects to him and see what he says.
Keep John in your thoughts please, I think we’re in for a real rough time.
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