My wife’s extrahepatic CC

Hi tflory,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your husband. But I’m glad that you have joined us all here as you will get so much support and help from everyone. I can’t really add much to what the others have said to you but I just wanted to stop by and welcome you here. Please know that we are all here for you and if we can help in any way at all then please just ask. We know what you are going through and we care.

My best wishes to you and your husband,

Gavin

tflory….sorry for being late in chiming in, but I wanted to extend a warm welcome to you also.
I also wanted to mention that in the case of falling tumor markers (CA 19-9) the falling numbers correspond to tumor response. And, that is excellent news.
I wish for continued success.
All my best wishes,
Marion

Thank you pamela,lainy,and eli for responding.We went for a second opinion to a medical oncologist and we liked him so much we may switch. This is such a hard decision, but he is much closer to home( right now we drive an hour one way for all treatments and the hospital), and he is much nicer than the oncologist we have now. He had chemo #3 on Wed. and his CA19-9 went down. I think this is good. Does anyone know if this means the tumor is shrinking? We didn’t have a chance to ask the doctor because we got the results right before the end of the day because they had to do a second blood draw. I try to be very supportive of whatever he wants. I want him to live, but I want him to enjoy his life also. I watched my Dad suffer for three years with bone cancer. It’s so hard to watch him everyday, because I see so much of a repeat of my Dad. I thought I had come to terms with his decision, but there is a part of me that keeps looking for new info,treatments, anything, which he isn’t interested in. When he was first diagnosed, they gave him 6 months to maybe a year. At first, I felt like he could die any day because there were so many ups and downs. We were in the hospital alot, he had blood transfusions, infections, and several stent exchanges, and a complication with some internal bleeding. Things have finally levelled off more and it’s been at least two months since he’s been hospitalized. The pain med regimen has finally been working and no more tears and crying from the intense pain. It’s so hard to watch someone suffering in pain and there’s not a whole lot you can do. Eli, about your daughter, she is fully aware. I talked with a therapist at the school I work at and wondered the same thing about my son. He is very private and doesn’t show much emotion. Unfortunately he was with me at the hospital the day we received the news, which I feel bad about. He remains hopeful that his DAd will be healed . He is more in denial that his Dad will die and doesn’t accept it. That’s fine. I am very honest with him and told him his Dad could be healed, but more than likely he will probably die. We have shared most info from the doctors, but he doesn’t ask a lot of questions. The therapist said that he doesn’t want to accept the reality of it, but everyday he sees his Daddy not feeling well. Seeing his Dad crying from the pain has been hard for him. I have arranged for him to go spend times with his friends on weekends to break up some of the time. Kids deal with this in their own way. It may seem unfeeling to us, but it’s very scary to them. They think what does this mean for their life and how will their life change. I try to reassure my son all the time I am always here for him.I will pray for you and your family.

Dear Eli,
I just wanted to say hi and welcome to the site. I hope you visit often. I have a daughter, Lauren, who is 25 and has CC. I read everything I can to try to stay informed. I learn a lot from all the members here. But mostly, I get so much support. The members on this site are always ready and willing to listen and offer kind words of encouragement. I am sorry your wife is suffering with this terrible disease. We will all fight together.
Take care and God bless.

-Pam

Jim, He was diagnosed at age 12 with ulcerative colitis and fought it for many years. Five years ago he had his entire large intestine removed.I guess he is tired of always being sick and doesn’t want to live his last days in pain or complications from the surgery. He also hates being in the hospital and the surgery requires a lot of time there.

Eli, I too am new to this site. My husband,who is 40, was just diagnosed with cc and PSC in Sept.We also have a child,son, who is 11. I know exactly what you are going through. No one can prepare you for something like this. I lost my Dad five years ago to bone cancer. my husband has stage III cc with a Klatskin’s tumor.The other problem is that the cancer is in the hylum and also extra and intrahepatic with lymph nodes involved. We are doing the gem/cis combo and he is on his third treatment. They would like to shrink the tumor in hopes of surgery, but my husband doesn’t want the surgery and there is a possiblity if the main blood vessel is involved they can’t do surgery. This site has been awesome in info. I have used many tips on nutrition and supplements. My husband’s nausea has been horrible also, but seemed to do better these last few times with Emend and decadron. The dissapointment and depression is horrible with this whole situation, but my faith in the lord and the love of others has helped. I know it is hard, but try to find something ,even little things to be thankful for. When I concentrate on these things, it helps .

Not that I want to but I am trying after many months of lurking to introduce myself and my amazing fighter of a husband Darrell who became sick in Febuary which started us on this road of fighting this monster cholangiocarcinoma. I can’t figure out how to get to the introduction posts for new members?