vallerina
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Hi Deadlift,
I’m so sorry that you are going thru this. My dad was diagnosed in July after about 6 months of tests,etc. My dad has one large tumor and 5 small ones, all in the bile ducts. You mentioned your wife is in the AG-120 trial. Has she been diagnosed with IDH-1 mutation. My dad has that. He has done two chemo treatments of Gem/Cis, so far.Anyway, I will be thinking of you and your family. I’m glad that you found this forum. It’s been a huge help to me.
Vallerina
Hello again everyone,
I’ve met with my dad’s Dr. He is only the second oncologist that I’ve ever spoken with-they are a special group of doctors! So compassionate and generous with their time! My father has one large tumor and four or five smaller ones. All of them spread throughout the liver. So, not a good candidate for surgery at this time. But he is tolerating chemo pretty well, and I am hoping the tumors shrink enough to let surgery be an option. Dad did have molecular testing done. There is an IDH 1 mutation. The doctor knew of a clinical trial, but dad doesn’t want to leave home. I’m somewhat frustrated because he is otherwise in great health, but I will respect his decision. I am going to do some more research on this, though. Maybe I can persuade him . . .Cathy, thank you for the info on Dr. Chapman! Hopefully, that will be an option soon!
Vallerina
Hi! It’s wonderful that your dad is doing so well! My dad was also diagnosed with ICC this spring. He has had two weeks of chemo, so far. I am leaving everything behind to go care for him. I leave Wednesday. My father and I are super close, and this is all so new to me, also. I love this board! There is so much info and support here!
Sending best wishes for you and your dad!
ValThank you again to everyone who has replied to my post! The shock of my dad’s diagnosis has mostly worn off and I have been reaching out for support and doing A LOT of research. Wednesday, I fly out to be with him, and this is my plan of attack: 1. Become familiar with his particular situation. 2. Gather up several sets of copies of scans, tests, etc. 3. Reach out to ICC surgical teams at USC (Dr. Parekh), Stanford, UCSF, and Dr. Chapman at Barnes Jewish in St. Louis. 4. Begin documenting everything related to this, and begin keeping lists. It has been a lot to take in in such a short time, and what with trying to tie up loose ends here in CA before I leave, and just wrapping my head around all of this, it is hard not to feel guilty for not acting sooner! However, regret and guilt will not do anyone, especially my dad, any good. I try everyday to reach out to people that I know care about me and I try everyday to find one thing to be utterly grateful for.
Does anyone know the names of the surgeons at Stanford and UCSF that I should contact?
Thank you,
ValHi Dave!
I think that you and I registered on the same day here. My father was recently diagnosed with ICC and started chemo a week ago. He had his second treatment today. He had a rough couple of days, but seems to be tolerating it pretty well. His doctors also said he is not a candidate for surgery, but we will be seeking second, third, and fourth opinions.
I feel so lucky to have found this website!! It has such a wealth of knowledge and support. Next week I fly out to be with my dad, and the first thing I will do is get him registered here!
Anyway, I just wanted to reach out and say “hello”, and I’m so sorry.Keep up the good work, and I’m crossing my fingers for both you and my dad!
Val
Joe, how exactly do you find a surgeon to do the surgery? I’ve never done anything like this, so what are the steps? Thank you!
My father is 72. In fairly good health, but high cholesterol and high blood pressure (both treated) and bypass surgery some years ago. He did not have ANY symptoms. They found it because he had a scan of some sort on his bladder, and they just happened to see it. They did not know what it was, thought maybe it was a clump of blood vessels. He actually lives in Western Colorado. I don’t know if they did any blood tests at the time of the bladder scan. I know that they waited three months to see if there was any growth or changes., which was unfortunate. There was growth, so more scans, etc. No cancer anywhere else, and a definite diagnosis of ICC. I don’t currently know who his doctor is, but they have been in touch with doctors at University of Utah. (I think that’s the place.) They did not think surgery is an option. He’s started chemo last week to hopefully get a little more time. I know that I need to find out more: where is the tumor, what size, what stage, etc. He and I have never been through something like this, so we are getting used talking about it still, but he seems very open to getting a second opinion, which I think we should. I will be going out next week to be with him, but I will ask dad for more info in the next day or two. I will post more details here after I find out more . . . Thank you, everyone, for the welcome and concern!
