Re: Possible cholangiocarcinoma

[Guest guest]

Hi,

I'm so sorry for what you aregoing through. I'm 20 years old from

Tehran, Iran and I got sick when i was 16 and was been undergone

Whipple and Cholecyctectomy and Jejunectomy in 2005. somehow we have

the same pain I'm not surely diagnosed with PSC but it may be bilary

ducts cirrhosis or cholangioca though there's a background of

cholangioca in my family.mother's side.

I'm also worried whether I'm a PSCer or one of the two other ones?

I also have no support and my girl friend left me just because of that

in fact her mom wasn't willing to let her girl step forward with me duo

to my serious disease.

we can discuss more about cholangioca and other possible things we are

exprienced in so just email me and I'll do my best to help you pass

this proudly.

write me at ( m.massoumi@... )

Wish you luck,

Melvyn

>

> Hi

> I am a 50 year old female with the possibility of

cholangiocarcinoma.

> I have a large stricture in the common bile duct. Could face liver

> transplant if ERCP/biopsy comes back positive. I have had Ulcerative

> Colitis since I was 16 years old and now have an ileostomy due to pre-

> cancer in the colon. (1996) Have had Primary Sclerosing Cholangitis

> since 2003. I am very concerned about my future and what options I

> might have that I haven't already researched myself. Concerns I have

> are dealing with insurance not covering expenses, or losing insurance

> in the future. Also looking for information pertaining to finding my

> own possible live liver donor. Feeling alone and frightened. Not

lots

> of support at home. Can you help me?

>

[Guest guest]

Hi!

Weekends are often quiet in the group. There are many folks here to help support you with information, as well as emotional support. Please don't hesitate to write again with specific questions.

I think many people, if they can, will go to Mayo for a second opinion and/or treatment if they have cholangiocarcinoma - Dr. Gores has a vast amount of experience with it. Again, if your specific questions aren't answered this weekend - send another email!

As a mom of a PSC'er who has been a part of this group for 2 1/2 years, I can comfortably tell you that you have now found a large extended "family". Hopefully, you will feel less alone very soon. Take care.

Joanne H

(, Ca., mom of , 18, UC/PSC 2-06; Rheumatoid Arthritis 98)

Hi I am a 50 year old female with the possibility of cholangiocarcinoma. I have a large stricture in the common bile duct. Could face liver transplant if ERCP/biopsy comes back positive. I have had Ulcerative Colitis since I was 16 years old and now have an ileostomy due to pre-cancer in the colon. (1996) Have had Primary Sclerosing Cholangitis since 2003. ... Feeling alone and frightened. Not lots of support at home. Can you help me?

..

[Guest guest]

Hi, Tilliermo, it is understandable that you'd be feeling pretty

frightened, but you've come to the right place. Cholangiocarcinoma

used to have a much worse outlook than it does now. Now, there are

several facilities doing protocols that treat the cancer and then

provide a transplant. If you search the archives of this site

and her husband have just been through this and he seems to be

doing incredibly well now. Insurance concerns are also very daunting,

but as we learned at the 2007 PSC Partners conference, most transplant

programs have people that help getting that sorted out. There's a lot

to figure out and a lot to get organized, but this site and the PSC

Partners site - www.pscpartners.org - have a wealth of information

that will help you figure it out. Not to mention the people here that

have been through virtually everything and generously share their

experiences and collective wisdom. You're going to be ok - and don't

be afraid to ask if you have specific questions.

best,

Nina in Philly

[Guest guest]

Tilliemro, I am glad that you have joined this wonderful group of

individuals. Your medical history sounds a lot like my own personal

history. I have an ileostomy due to dysplasia, diagnosed with PSC in

2005, had colectomy/ileostomy in 2005, CBD stricture in 2006 (with

stent placement), numerous hospital stays, most related to PSC.

I do believe that without joining the PSCers, I would feel as

isolated as you may be feeling right now. There are a good number of

us here who are pretty scarred up from all of the procedures and

surgeries that we have had but we keep on fighting.

We collectively try to support one another through knowledge,

research and the friendships that we have developed by being

the " special " individuals that we are. Please tune in to this group

often, there is a lot to learn and know that you are not alone in any

of this.

With much hope,

Deb

UC 1993, PSC 2005, colectomy 2005, CKD 2007, one fat and happy golden

retriever