Natural History Of Advance CCA In A Long Term Study.

Mark thanks, I am beginning to see the common thread here of Sulfa in all these Meds and perhaps that is what I can’t take but will ask the new GI on the 26th. Here is a note from my Google: Gastrointestinal intolerance to sulfasalazine (the active ingredient contained in Azulfidine) occurred frequently and resulted in drug withdrawal in 17% of treated patients.
Yes I have been on Preds a year, not good as it can affect Adrenal glands. I got the chipmunk cheeks, tell all I am storing for the winter. Got 25 LBS heavier of which I just lost 8. Like Chemo brain I have Pred brain. I have almost every side effect there is. Should be off in another 3 weeks. On 5mg and he wanted me to go off very slowly because I have been on so long. Today is much better as I did not take Lialda last night. Thanks so much Mark.

Hi, Mark, and thanks. May I ask what meds work for you? I just discovered yesterday that the Meds I have been on for a year are Meds that can even cause UC. Everything works the opposite on me but you would think the GI (highly rated) would have known after a year that these Meds could be prolonging the UC and not allowing me to go in to remission. I have been on Prednisone (high doses) for a year with Lialda as a ‘healing’ Med. When I heard healing I never looked it up until yesterday and the first thing the article said was that Lialda is in the Mesalamime family and I am allergic to Mesalamime! Sorry everyone, I know this is not CC, couldn’t help myself. There are NO decent Boards like this one for UC. Eagerly waiting for NOV 26 with the new GI.

Randi, I never was DX before last year but this actually started when I was about 48 and had just divorced Brand X after 23 years. I was OK after awhile and I know now that being a Care Taker for 5 1/2 years pushed it to this point. I emotionally held everything in. I finally took my own advise and am going to a 3rd GI guy in a year. 8 months is long enough to give someone to find the right Meds. Yes? I have a whole new respect for UC patients. One might say I just worship the porclain god.

Hey, Uniqueness out there…that is what I said. You could read it as you have had surgery. Randi, I thnk you know I also have a rare Cancer that usually returns, but oddly I just don’t think about it. I really don’t. Like Teddy used to say, it is what it is, now lets take care of it. Of course I am a lot older than you and have seen my Grandkids grow up into wonderful people, although my first Gandson who will be 26 is getting married in May. I am rally looking forward to that and to see how they all end up but again I just kind of put Cancer on a back burner. It’s the Ulcerative Colitis that is getting to me. I told Gav today there are times I want to flush myself down the terlet! lol Sometimes I say that these Golden years are slightly tarnished….time to get out my polishing rag.

Wait, now that I read it it looks like it’s a study of advanced stage non-resectable CC patients who do NOT have chemo or radiation.

“We aimed to evaluate survival time and prognostic factors in patients with advanced unresectable cholangiocarcinoma who have not received surgery, chemotherapy, or radiotherapy.”

Basically it says that surgery is the best hope, and we already knew that. Also it is based on patients between the years 1996 and 2001. You had surgery, read it if you want. It is not long either. You don’t fit the mold, you are unique!

Pam things have even improved since Teddy was DX in 2005! I see Whipple patients doing so much better than he did.

Pam…be careful when reading these studies. For one: watch the dates – this is a retrospective study. Although not always resectable, over the last decade treatment options for our patients have greatly improved. If same study was conducted now with a larger patient base – you would see different results.
Hugs,
Marion