hey out there

Mary, From what I understand is that althought cholangiocarcinoma and adenocarcinomon is of the same family of the carcinomas, cholangio is when the disease begins from within the organs and adeno is when is mets from other location and usually begins on the outside of an organ, which I think can explain why some may do better than others as far as survivabulity. It takes a real good pathologist to determine the difference and then they can make a mistake and have to double check as under micropscope the cell differiation is so much alike. I understand the treatment is basically the same if advanced but eventually adeno works it way enternally. I actually researched and found that out on a site yesterday. I just typed cholangiocarcinoma vs adenocarcinoma and got a few hits explaining the difference. Either can be intraheptic or extraheptic and lower grade vs higher of either can be determined by a good pathology report. The site I hit actually show CT Scans and MRIs of the difference with views of cells showing the different makeup. I will try and find it again and bookmark it to share. If anyone has seen or knows of this please jump in.
From what I also understand is if it is found earlier enough and is more on the adeno side and is resected your long term surviability is more likely. I only understand to a point as it is all considered systemic. I’ll try and find site again and share it with all. I wish you and your husband the best.
Jeff G.
P.S. Thanks for the wish and the same for your Husband and you of course. Beautiful day out today; got to plant some more flowers. Looking primarily for colorful perenials that return every year.
P.S. #2 Baylor College University of Texas is were I got a lot of the inormation http://www.baylor.edu article of the month.

Cass….. I am very sorry to hear of your sisters’s diagnosis. You’ll inherit a world of information in the days to come. Bottom line there is no known cure but many types of treatments. We are all individuals on our own personal journey hoping to find something that works better or eventually hit on something that will help many. It’s like going fishing and waiting for that bobber to go down. Some days it happens and others it don’t. Sometimes the bobber just swirls around and bounces a little giving us just a little bit more hope that we’ll catch that fish(cure). Even if it’s a small fish and only satisfies us for a while. One day we’ll catch the big one. If I don’t get the big one at least I had the enjoyment of fishing at a beautiful lake. knowing I tried means to me I contributed so that one day someone else will catch the big one. I would love to share my catch with all. Many options Cass and many opinions by a lot of individuals . You’ll have to weigh and decide with your Sister to determine which road to take. Not all is known by us here on this site but we can provide you with some pretty solid advice of want has and hasn’t worked for us as individuals. We have a common illness but we are all individuals with different outcomes. 8 Years and I’m still going to bed with my wife each night, I’m still supporting my Son who is going through recovery, I’m still driving him and I to appointments, I’m still playing with my grand children, I may not be working full time but have become domesticated around the house. I guess I’m saying most of the time I’m useful and when enjoying what I do I hardly notice the pain. Again you and your sister will have to decide and advocate accordingly. Yes, There will probally be a day sooner or later; no time table set for me. It’s when the lord comes a calling. Even the Lord says he can help only those who are willing to help themsevles. To close my rambling, This site is here for you whether it’s support, advice, what worked for us or not, or to just simply vent. I really wish you and your sister the best as you turn on to this bumpy road that could or may not come back on the smooth highway.
God Bless You Both!
Jeff G.
P.S. She is 33 Years Young with lots of strenght going for her. If not to advance in my opinion give it a few whirls and definitely get a second opinion. Also a second opinion for a pathologist from having a tissue biopsy to very fy low grade vs high grade cc and HCC VS Adencarcinoma can make abig difference on treatment approach. We have proven one thing by sharing on this site is the Doctor can not predict your length of survivabilty. I was told 6 months -1 year a few times already but they haven’t taken my drivers license away yet. I’m still going down the the road in my old beat up chevy; I might out last my truck for that matter.

I sympathise with you in your position. My husband was diagnosed on Nov 5th 2005 and died May 2nd 2006. On Nov 21st they operated to do a resection but found that the cancer had spread to parts of the body not visible with diagnostic tests. One month later my husband came home. He also declined chemo, believing that at his age (66) it would weaken his total immune system and he would be no better off in the long run. We decided on other more holistic approaches but it was not enough.

Since then I have been visiting this site regularly. I follow the discussions which are mostly about the various chemotherapies that are being used to try to delay the onset on the disease. There is no cure. Resection with clear margins seems to be the best option but is not available to everyone. For everyone else chemo can postpone the onset, – a decision that has to be balenced against the quality of life during the process of treatment which has inevitable painful/fatiguing side effects.

Reading the discussions here, I had started to think that perhaps my husband should have at least started on the chemo, since it would have probably extended his life. However I have been reading the blogs over the last week and I have shifted my opinion somewhat. It seems to me that once people take the medical route, it is often like a row of dominoes as one treatment causes another problem, more intervention and more pain and discomfort. The initial treatment seems to work but there seems to be a tipping point where the disadvantages start to outweigh the advantages. M’s experience of hospital made him refuse to even consider being readmitted to hospital. In the end he had a gentle death. (see In remembrance) We, his family were in control and able to do what he wanted rather than being in the hands of the medics with ever more piecemeal treatments to deal with the consequnces of the previous treatments.

I do wonder if the mantra of ‘going on fighting’ when the battle is really lost is best for cc sufferers. When treatments are no longer working, pain fatigue and discomfort become everyday experience and other serious complaints are presenting one after another, is it the best thing to accept the inevitable and seek a ‘good death’. For myself I am certain that it’s what I would want (although I know that there are people for whom however uncomfortable, life is everything)

My husband was treated by an Indian nurse whose view was the death is part of life and the move between the two should be to help dying accept and move on, not to go on fighting with increasingly intrusive and painful treatments – often unproven.

What I now think is that
M should have at least started with gemcitabane which is usually well tolerated. If the consequences were unacceptable to him then he could have stopped it when he wanted.
We should have started earlier with our holistic doctor, since she was very busy and we had to wait a long time for an appointment.
And finally to stop trying to ‘save’ him with new treatments, pills and potions. What he wanted from me was to talk to him, sit with him, do relaxation together and gentle exercise, massage his body, read to him, light scented candles and play music. Play backgammon and chess with him , get friends to visit, look at the family photos and videos, do everything to make those last days precious and enjoyable.

There are far more treatments available in the US (we are in the UK) but all of them with side effects. I feel that reading the blogs, they did extend life and the families were able to have weekends away together which was a great outcome but it seemed to me that a time came when the issue became one of acceptance and making the life of the patient easier in his final days.

I would urge you to read the blogs for a fuller picture of the disease and its development.

Alison

I wish you well in your consulatation with Prof Lodge, he is a great guy and really easy to get on with, and he’s a brilliant surgeon. I believe that resection is probably the only route to cure, from what I remember reading from Jon’s posts his tumour is at a fairly early stage so I would hope for both of you that is is resectable.

Regarding chemo, I’d just mention that Gemcitabine+Cisplatin is recognised as being more effective that Gemcitabine alone (this is also shown by early results from ABC02). And you don’t need to get these via a trial, my oncologist put me on Gemcitabine+Carboplatin as the first-line chemo regime (he says that carboplatin is a 2nd generation cisplatin). And my latest scan shows slight shrinkage of my Lymph Nodes (metastatic disease – my tumour, which Prof Lodge removed, was very advanced and he was unable to get to all of my Lymph Nodes).

Anyway good luck

Geoff

Cass,
I very much agree with Stacie. We have talked to several people who have been treating CC with different chemo combinations, some of them as long as 17 years. Don’t give up hope.
MarionS

Cass
We had been told that my husband had 12 months to live with chemo – six months without chemo. You have to exhaust all resources. The greatest difficulty is in discoverying such resources. We are forever indebted to the wonderful people who developed this website and to Peter, who posted his experience with CC and the name of Dr. Jenkins. I will gladly forward the surgery report to anyone requesting it on this site, if it can be of any help in chosing a doctor to perform such a complicated operation. There may very well be someone in Australia who can help you.
Good luck
MarionS