I am the daughter of fllover. My father is 73 years old. Very healthy and active prior to being diagnosed, his arms and legs were all muscle. His brother died of brain cancer and sister died of colon cancer.
A few years ago my father and mother moved near Coco Beach Fl. During the summer they come back to Syracuse NY. Upon returning home, this May, my father started feeling ill. In a weeks time my father went up to the VA in Syracuse several times. They finally admitted him for testing and observation. This is when we found out he had cc. When asked what stage the cancer was in we were told "advanced". We were also told he had microscopic cancer cells throughout the liver. The VA doctor told us he does not agree with the aggressive approach for this stage of cancer. He believes in keeping the patient as comfortable as possible as this stage. He only wants to use gemcitabine. He also has a clot (?) in the bile duct going into the liver (don't have my notes with me).
After our first appt, I did research and found this web site and the May 2009 posting from the Mayo Clinic about using gemticabine and cisplatin. I told my mother and four sisters my findings.
We had a second appt with the VA doctor's assistant. We told her we wanted to do both drugs. She said to wait and see what the 2nd opinion doctor said, she called him "MR RIGHT" (Johnathan Wright). She was happy we picked him as our 2nd opinion and couldn't say enough good things about him.
Johnathan Wright said because my dad is so healthy, other than the cancer, he would start with gemcitabine and one of the platinol drugs. He doesn't use cisplatin.
My father loves the VA and because he has medicare Advantage in Florida, they went with the VA.
When my father went for his first chemo appt, my mother, father, and myself were all in agreement we wanted both drugs. The assistant doctor came in with a paper indicating that the use of both drugs was only a stage 2 trial and the doctor doesn't like to use Stage 2 trials. If we wanted to do both drugs we would have to wait 4 hours to talk with them. My father started getting upset so we went with just the gemcitabine. He has no side effects other than being tired.
Last week my father went to his "new" regular doctor who told him he was retaining fluid in his stomach. Shortly after that he started complaining about his back and stomach hurting (he says his stomach is as hard as a rock). His stomach is very bloated looking, but I think it has been since they came back from Florida.
This week starts another round of chemo. My parents, again, want to do both drugs. I don't think the doctors will do it.
Next month they plan on going back to Florida. My son and I are going to make sure they get down ok and stay for a couple of weeks. I want to meet with the VA doctors down there to make sure they are all on the same page for his treatment. I am concerned with leaving them alone. My mom says they have friends that will help. I have not met them yet. My parents don't ask enough questions, they don't question what the doctors tell them. They don't remeber things. My mother doesn't take notes, I gave her a pad of paper and pen. We won't know what is going on.
I know everyone is different, but is it too late to try both drugs? What questions am I forgetting? not knowing to ask? What did I leave out?