sara

Welcome, Celia. I’m glad you found this board. I will echo Mary’s sentiments – you need to get a second/third/fourth opinion. At the risk of sounding flippant: This is not breast cancer. There is no established protocol on attacking the cancer with chemo/radiation. Consequently, not just any oncologist can treat it. You need to get your husband to a hospital where the oncologist sees hundreds of CC cases, rather than just a few cases. And while these highly specialized oncologists may not be able to provide a cure, they are knowledgeable about the cutting edge of treatment options (and are probably even heading up the research). The big hospital names in the US are MD Anderson (Houston, TX), Sloane Kettering (New York, NY), and Mayo (Rochester, MN). There are other great doctors at various hospitals around the country, but these are the big hospitals. I would definitely seek more opinions from at least one of these hospitals.

jmoneypenny – I highly recommend you change oncologists if your mom is not happy with the current doctor. This is a team effort, and y’all should definitely be on board with everyone in your team. And this should be an “easy” switch because you have Sloane Kettering in New York – I guarantee there will be at least one doctor focused on CC there.

This is a scary cancer, and it’s so important to find the right oncologist to guide you through the treatment options, both physically and mentally. Not all doctors work for all patients. Dr. Hochster may be a great option for some, but is obviously not working for you. It is ok to switch.

I am glad you found this board, although I will echo Peter’s statement that I’m sorry that you had to find the board.

My friend didn’t have any stents placed in the ducts to help open them up. I don’t know if it’s because she had intrahepatic bile duct cancer or not. But I did notice that she started to appear a bit jaundiced towards the end. (in the last 3 months)

For the following information, please keep in mind that I have ZERO medical training. This is just what I picked up along the way during my friend’s fight. There’s probably some truths intermixed with some erroneous information. I imagine the best policy is to remain silent, but I remember the helplessness feeling of just wondering “when.” so, I ‘ll take my best stab: Is she retaining fluid in her abdomen? If so, then she has ascites. I cannot tell for certain, but your original post seems to imply that the doctors said she does not have ascites. Obviously they should know better than anyone on this board. However, if the doctors just haven’t said that word yet, there are some signs you can look for. If they prescribe a diuretic, or they are draining fluid from the abdomen, she likely has ascites. If the diuretics work on relieving the swelling, then she’s not as far along. (relatively speaking…maybe several months) However, if the doctors have started draining the fluid regularly, you’re probably looking at weeks. If the swelling is not fluid induced, then I imagine the swelling is coming from the swollen liver, which will grow to compensate for the reduced operating capacity. And I’d guess that you’d be looking at many months in this scenario.

Your mom, you, and your entire family is in my thoughts and prayers.

Lisa,

I am saddened to hear about your brothers. I cannot imagine losing two loved ones so close together.

I am curious – I recall reading earlier that one brother was diagnosed with cc, and the other with pancreatic cancer. Did they change the diagnosis on your brother with pancreatic cancer?? This is so bizzarre to hear that two people in the same family have this cancer.

My best to you.

Barbara – My friend Kelly experienced very similar symptoms and it turned out being the port. I seem to recall there being a leak (maybe something had disconnected) which made her very ill and vomitting all the time. She was also coughing, but I can’t remember the exact details. There was something else going on when she raised her arms, and/or tilted her head back, but I cannot recall exactly what it was. I’ll go read her blog to see if I can find it. (the Lester blog on here) I would follow up on this, as it took her doctors a week to figure it out. For whatever reason, the doctors didn’t seem very focused in on the port as a possible source.

I am sorry I cannot provide more definitive information. The happened to her not too long after having the port installed, and so much has transpired since then. If I find an entry in her blog referencing this, I will post the information on here.

Irene – Stacie posted some very good information. I really hope that your husband will seek second and third opinions before taking the next step. This cancer is very rare, which means that there is not a large number of cases to warrant extensive research. Therefore, you’ll find that there isn’t really a prescribed course of treatment. Check out the blogs on here – the posters are taking different chemos, in different orders. What is extremely important is the decision on the first chemo. (should you elect to go that direction) The tumor cells are still virgin to chemotherapy, so you want to make sure you hit them with the most effective cocktail – and that decision requires an expert oncologist in cholangio.

I highly encourage y’all to speak with the experts at the major cancer centers. Sloane Kettering, MD Anderson, Mayo, etc – they are filled with the “top” oncologists and surgeons from all over the world. They deal with many cases of cholangio and they are better positioned to offer more options to your husband. As Stacie indicated, these doctors are on the forefront of research, and are privy to much more information than your husband’s current doctor. At a minimum, you must talk to an oncologist. Chemotherapy can be a great tool – not just for extending your husband’s life, but also managing the pain.

If you do elect to receive more opinions, and since you may have your first visit with an oncologist at one of these hospitals, start the necessary paperwork at the cancer centers immediately. At least at MD Anderson, you’ll discover there is a fair amount of red tape to wade through just to see a doctor. Mayo is much faster, but still requires work. I don’t have personal experience at Sloane Kettering, but I bet several others here could tell you.

My best to you, your husband, and your family. I wish you didn’t have to visit this site. I wish none of us did. (but many thanks to team Clements for getting it up and running)

Hi, Mr. Goodbar. I’m glad you found this site. Perpetual thanks go out to the tireless creators – they have done great work.

Who are you seeing at Mayo? I know that Val McCrea had a bad experience there, but I believe Dan Peterson has had ongoing treatment, and I don’t recall reading any negativity regarding the treatment. You might want to go check out his blog (found under the General Info section) for more information, and see if you can’t contact his wife directly. I’m sure they are a wealth of information.

My brother-in-law is an oncologist there, and he’s currently treating several cc patients. He focuses more on research of cholangio. I will ask him who he recommends you see at Mayo, if you don’t already have a doctor.

Just from visiting there, Rochester is a fairly small town. However, I think it would be beneficial to have a car at your disposal if you’re going to be there for a week. I do know they (Mayo) have free lodging for patients receiving radiation at Mayo, but I don’t know if it’s open to anyone receiving any other treatment, or consulations from the hospital. I would contact the hospital and explore further, as it’s a potential large savings for you.

I will keep your father in my thoughts and prayers. I will also try and get back on here soon with a doctor referral, should you need one.

– Sara