When we lose a moderator to the disease of Cholangiocarcinoma, we lose

We are so sad, we were so blessed, they are so missed… forever in our hearts.

Tom,
Believe me I understand about getting down. My husband had an attempted resection and when the surgeon came out and said he couldn’t do it we were devastated. We thought that was the end. Fortunately at OSU, they use a team approach and all of the specialists were called in to review his case, Surgical Oncologists, Radiation Oncologists and Medical Oncologists and they put together a very aggressive treatment plan for him that worked. Has Ben seen a Radiation Oncologist? Not everyone is sent to one and that bothers me because all of the specialists approach treatment differently. It was really interesting at the time to deal with the three different doctors and teams. I found the surgeons and radiologists to be the most optimistic. They were all great but the Medical Onc. basically pushed chemo more and we weren’t and still aren’t too keen on that. Take care and best wishes for Ben. MAry

Tom,
I’m sorry that I can’t go back through all of the good news section to point out everyone- I have horrible internet service and it just takes too long to go back through hundreds of posts. I don’t know about being stage 4. My husband was never actually told what they considered him. He was told he would only have 6 – 18 months with or without treatment. Anyway, look up Andy from Britain, someone from Vancouver wrote about their father who had received no treatment and was four years out. Lisa is three 1/2 years and did not have a resection. Someone actually wrote the other day about doing well, staying stable, for at least three years now and they did not have surgery. There are others that have posted through the years. I don’t know about moontje. They were doing alternative treatments but her Tom may have had surgery eventually. I spoke to a woman I met at a flea market that told me her husband had been living with cc for over 4 years and had remained stable and doing well. He could not have treatment because of cirrhosis. Andy and my Tom are the only ones that I know of that have had their tumors actually go away, but the others have remained stable and are doing well without going through the ordeal of surgery. Someone just said the other day that their surgeon told them there was a fifty per cent chance of the tumor coming back even with clean margins. It really seems to depend on whether the cancer is aggressive or not. If it is the aggressive type then I’m not sure there is anything anyone can do. My point is that surgery is great if you can have it but I’m not sure that it is the only cure. You shouldn’t lose all hope if it isn’t possible! Take care, Mary

Ditto to everything you said, Marion – and thank YOU for always being there for all of us. You are priceless, too.

Joyce M

Marion,
We all need to thank you, too for all of the time and support you provide and of course, the knowledge! Yes, we have been through a lot on this board. While we were going through our acute phase of treatment I was reading about your husband and Mark Clements and Valerie McCrea and so many others gone but not forgotten. It was sad to deal with those losses then and scary because I really felt Tom’s case was hopeless. Of course after all this time he is still here and doing well. As I said before, there is no rhyme or reason to any of this.
Ben,
My husband did not have a surgical resection and is still here and doing well. In fact there are others on this board that did not have surgery and are doing very well. Many have had surgery, like Kris, only to have the cancer recur, sometimes very quickly! I personally don’t believe surgery is necesarily a cure. At least not the only cure! I am a strong believer in diet and supplements as far as this cancer is concerned and radiation!! A lot of Docs don’t believe in radiation because of the damage it will do but the liver will regenerate and I believe any damage will eventually repair itself. Scar tissue is an issue but it is with surgery as well. I don’t really like the chemo approach but it has helped some. Take care. Mary

I will say this is why I go through periods that it becomes difficult keeping up with the board because ultimately, when surgery isn’t an option (and many times when it is), the outcome is devastating.

I too am so humbled by so many courageous moderators on the board who I have grown to know so well, even though many are no longer with us.

The legacy they leave behind is profound, and while some days it’s difficult to be here – the courage with which they fought this disease keeps me going. When I needed help and information when first faced with Ben’s diagnosis – the detailed updates by so many helped me arm myself with knowledge.

To all of our fearless, selfless moderators I am forever grateful. I don’t know what I would have done without you.

Tom