Topic: Natural History Of Advance CCA In A Long Term Study.

Ghi, everyone,

http://www.biomedsearch.com/nih/Natural … 31764.html

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Natural History Of Advance CCA In A Long Term Study.

Hi Percy,

This article is very depressing. sad

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

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

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Natural History Of Advance CCA In A Long Term Study.

Thanks, Marion. Great to know. I feel better now.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

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

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

So, should I or should I not read this article?

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

8 (edited by randigb Wed, 14 Nov 2012 17:05:25)

Re: Natural History Of Advance CCA In A Long Term Study.

Awww, thanx Lainy.  I get to a point where I don't obsess about the cancer returning and then I read something that says it will and I obsess again.  It's a vicious cycle.

Oh and you are unique as well smile

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

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."

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

Hi,
you are right, it is a study of patients who did not have surgery,chemotherapy and/or radiation.All the patients were discovered too late to have any kind of therapy. Things are much different now. so don't get depressed and think how lucky we are now that different treatment plans are available now as compare to just  7 OR 8 years ago.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Natural History Of Advance CCA In A Long Term Study.

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

I am so sorry about the colitis...what a pain in the ...well er...you know.
I never knew how much I took normal toilet habits for granted until I went thru all this!  Darn you Jamie Lee Curtis and your bowel innuendos!!!

big_smile

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

Lainy,

I'm so sorry to hear about the UC. I've had UC since age 16, 36 years. Not a fun little disease. It certainly taught me to let go of my pride in high school. Anyway, mine has been pretty well controlled wirh meds. I hope they find something to make you more comfortable. Of course, the surprise for me was learning last year that it's a risk factor for CC. Who knew. All those years of conscientious screening for colon cancer, and it pops up in the bile duct. Hardly seems fair!

I hope the new GI guy helps you.

Mark

Re: Natural History Of Advance CCA In A Long Term Study.

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Natural History Of Advance CCA In A Long Term Study.

Lainy,

Prednisone for a year! I really hope you can get off that soon. I'm on sulfasalazine (Azulfidine). Kind of old school, but it has always worked well at keeping me in remission at fairly low dosages. I've heard that it sometimes works for people where Lialda hasn't.

Mark

Re: 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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.