I am so very glad I stumbled upon this site. I wish I weren't here but now that I am your kindness and knowledge of this terrible disease are helping me calm and focus on what is the best for my husband. Thank you all.

To answer a few questions....Ron is 66, and is the chief operating officer for the prime contractor that runs an army base. The base is the main employer in town and with all the dreadful shenanigans going on in Washington DC, with the threatened sequester and all that goes with it, the army have been dithering around, withholding money, giving crossed signals (because frankly, they don't have a clue what they are doing) and this in turn leads to terrible uncertainty about what projects are coming down the line, what will be funded, what the staffing levels will be and who will lose their jobs.  My husband feels all this stuff most terribly and is so very good at calming everybody and getting the ship righted and in the right direction, but he understands that every layoff means that someone's life and plans are being seriously messed with. It has been very hard.

We live in the middle of bloody nowhere. 5 hours from Las Vegas, 2.25 hours from Reno and 2 hours from Carson City. The GI specialist we are seeing spent a year at Yale specializing in the liver. She seems good, but her office is a snake pit. Dealing with her office infrastructure has been bloody awful and I have had a couple of very straightforward conversations with them about dealing with people who are in extremis. There is a small hospital here, and our GP is good, but I know that there is simply no experience there with dealing with anything like this. The sense of isolation I feel here right now is one of the most terrifying parts of this.

Our oncologist is in Carson City, and seems to be highly qualified and has some experience with CCC. I don't know if it is enough. I just don't know anything at the moment.

We also have his mother, my beloved mother in law Becky, living here in town. She is 84, frail but feisty, and I am about worried to death about her too. I had to tell her yesterday, after she had returned from spending a few days at our daughter's place. It was one of the worst things I think I have had to do in my entire life. I called her sisters, who live in Louisiana, and they are coming up.

PCL1029, I AM going to question that radiologist. When we got the results that there was nothing suspicious cancer-wise, we were both doing jigs and raising the roof around the living room. This is one of the most gobsmacking aspects of this whole thing. The ultrasound report done on the 7th of Feb reads as follows;- "Hypoenhancing periductal tissue demonstrates mass-like confluence near the medial aspect of the right hepatic lobe and gallbladder fossa with extension into the caudate lobe. More confluent components measuring grossly 3.6 x 3.2 and 6.4 x 4.0 cm are present. There is mass effect on the adjacent hepatic veins with are secondarily narrowed. There is hupoenhancing sof tissue withing the right portal vein which may be bland or tumor thrombus". There is of course more but really???????those measurements didn't show on a CT scan? was he drunk, or blind or both???

We have the PET scan scheduled for the 27th. I WILL send his records and discs of all the scans to USC for evaluation. I cannot see him travelling there at the moment. He is so very weak. Good idea on the waiting until after the PET scans are done to start the chemo. I cannot bear to hurt him, or make him sicker if there is no good in it.

I hate this so much, I cannot express it but then I am calmed a little because all of you here understand. I am praying so hard for the strength, grace and the intelligence to look after my darling, his poor mum and our sweet daughters who are a mix of natural and step but are sisters through and through. I am meditating, eating on a schedule and exercising because I KNOW that I cannot take care of anyone else if I don't take care of myself.

Thank you all so very much

Helen

hi all,
I never ever expected to be on a support forum for CCC. A week ago I had never heard of it.

My darling husband, Ron, has had CLL for a number of years, but had no symptoms at all, and really excellent blood levels. I knew that this was a slow moving disease and that he would probably go on for years, and that eventually, many years hence, either CLL or old age would take him. I never ever dreamed of something like this.

Around Thanksgiving, he started to feel more tired, but we attributed it to high stress levels at work. After Christmas he started to feel really dreadful and went to the doctor. He had blood tests done which revealed very high liver enzymes but not much else. He had a CT scan on the 10th of January which showed nothing suspicious. We were referred to a gastroenterologist who thought it might be autoimmune hepatitis or a couple of other things, and last Monday, his belly really bloated, and became really painful. She ordered an ultrasound, and when it revealed a large amount of ascites, he was hospitalized so that all the testing could be done quickly.

The ultrasound showed blood clots in the liver, and I was really rooting for it to be Budd-Chiari syndrome, but the MRCP the next day revealed a mass around the bile duct high inside the liver which is impinging on the portal vein. They gave us a preliminary diagnosis of intrahepatic CCC and this was confirmed by the biopsy.

We saw our oncologist yesterday. He told us that the cytology reports on the fluid they drew from his abdomen revealed that the cancer has spread. The gastroenterologist wanted to perform an endoscopy but he is so weak, and so sick, he really didn't want to do it. We felt that if there was no therapeutic value for doing it, but just confirming what was known, it was just not worth it.

He told us that the disease is very advanced. My darling is so weak, and so terribly sick that he asked me just to ask all the questions and be his voice. This is not like him. He is quiet and calm but very definitely in charge of things. Not now. He is just exhausted, and his pulse is running very high all the time.

He is going to start chemo and we are both hoping that it can maybe give him some relief and possibly a little time. The doctor told me privately that given Ron's weakness, we could lose him within weeks. I feel just blindsided. How do we go from a non suspicious ct scan to stage 4 cancer in 4 weeks???

Is this normal? It feels just so crazy that I keep expecting that someone will wake me up and tell me that it's all just a dream.  I'm so glad I found this site. I am feeling terribly afraid.