Dad just got diagnosed with cholangiocarcinoma

Dear Hazel

I too am so sorry to hear about your news, I too am in my 50’s and had been pretty healthy until a few weeks ago, it gets you right in the solar plexus. I have a 10 year old son who is facing losing his mom, it’s heartbreaking. I don’t know if this will help or not, but here is what I have decided: My first priority is my son, so I am taking care of business, financial, paperwork, all that stuff. I had made that decision even before I knew for sure I had CC, I figured that the scare was the kick in the pants I needed to be a responsible parent. I did get a second, and a third opinion, not because I didn’t believe the original diagnosis, but at the behest of my oncologist. I have not given myself a death sentence, but I have made this decision: I will NOT go chasing after rainbows if it means that my quality of life will suffer. I don’t want my son to remember his mom as some puking hairless invalid who was gone half the time looking for the next study because MAYBE, just MAYBE, this will be the one. I am at peace with that. I tell my friends to continue to pray for miracles, my physicians will continue to look for studies that may give me some more time. I have many moments where I scream and cry, but I am mostly at peace. As long as I know my son will be taken care of and loved, I can concentrate on my physical well being. And if my time here is shorter than I wanted, then my duty is to teach my son to make the most of it.

My husband Joe was diagnosed with Stage 4 last July 2006. he chose not to do conventional chemo becasue he didn’t want to be sick the rest of his life. We did go to Mesa AZ in March to get alternative treatment called IPT Insulin Potentiation Therapy from Dr. Thomas Lodi. We were there for three months with a two week break in the middle. It is not covered by Medicare but it is covered partially by some insurances. His results were good. He had liver and lung involvement and his tumors have all shrunk and he has no symptoms now. We are continuing this treatment here in Il but not as often. There is a website you can check on for Dr. Lodi and for IPT. It worked for us and quality of life is definitely better. We also had lots of prayers along the way and feel that this helped us got through the last year as well as any treatment. God Bless you and give you wisdom in your decisions. Mary Anne

Many people on here are using alternative therapies and suppliments which do seem to help somewhat.
You may also want to get a second opinion but I have no suggestions as to whom as I live in Sweden. But I am not even sure that it needs to be someone definately in your area. My best friend is a pediatric oncologist at Fred Hutchinson Cancer center in Seattle. I am very unhappy with my oncologist here in Sweden, and she is going to send my scans and copies of my paperwork to a specialist she knows. So I do know that in some cases, doctors will look at the lab reports, scans, and notes and offer somesort of second opinion.

I am terribly sorry that your family is being touched by this disease. It is devastating for the entire family.

I understand being upset and not asking the right questions. When I was diagnosed and in the hospital, each round of bad news had to be given to me in intervals. I just shut down and the doctors picked up on it. So instead of having one 15 minute conversation with me I had like 5 five minute ones throughout the day. If it was really bad news, the doctor would wait until a friend or family member was there so they could take notes on the conversation and ask questions because I just shut down. Sorry for the ramble, but you sounded disappointed and frustrated with yourself over not respoinding well to the news and I just wanted you to know that it is ok and common not to take it all in at first. This is a great place for information and support. There are so many here with all types of knowledge and experience and hopefully they can offer you more advice than I.

Kris