Topic: Introduction

I have been reading this website every day for the past month since my 25 (yes, that's twenty-five, not a typo) year old brother was diagnosed with cholangiocarcinoma.  He's being treated right now at Dana Farber with chemo once every other week of Gemzar, oxaliplatin and Avastin.  I'll be interested to see how that Davanat trial turns out whenever it actually happens.  We've been having some good days recently, but by and large it's been really hard.  He's just so young to be dealing with this.  He's being a real trooper - he hardly ever complains about the pain or the enormity of the whole problem.  He's just been going on with his life as much as he can.  I think the rest of us are doing worse than he is.  Can someone please give me some hope?  Some good story?  ANYTHING?!  Will the pain get better?  Will he be able to eat more eventually?  Please, anything hopeful would be great.

Thanks -
Melissa

Re: Introduction

Melissa,

There are many on this website who are very young, I believe there are two younger than your brother thus far and many in their later 20s and 30s.  Hang in there, I'm a sister to a young brother with cholangio as well.  Today at 6pm EDT is the live chat and we are hoping that many from the website will come and feel free to ask questions and get some answers. 

Also, if you have not already done so, you can fill out a profile for your brother under the yellow "patient profile" title at the top.  After you have done this send me an email at stacie@cholangiocarcinoma.org and I can give you access to the other patient profiles, there you can find others on your same regimen or in similar circumstances with whom you can communicate and ask questions.  Just know also, that there are several cholangio patients on this website who are out years, instead of months.  Hopefully some of them will respond to your post. 

Stacie

Re: Introduction

melissa,

i am very sorry to hear about your brother.  There is hope out there, this is hard i know and the docs and internet often paints a gloomy picture - you must see beyond that and be reassured that there are long term survivors of this disease.

my dad was diagnosed a year ago now and initially we were told he wouldn't see christmas..then it was easter.. and so on.  He is still here and doing really well.  He is putting on weight and is active and leading very nearly a normal life other then getting a little tired occ from the chemo. 

The best advice that i can give you and i am sure that everyone else on this site will reiterate is to keep getting second,third, fourth opinions from doctors.  My dad has had 2 operations - the first surgeon said the tumor could not be removed - we then found a brilliant surgeon here in the UK who removed all of the cancer.  Surgery is the best option if your brother is a suitable candidate. 

If surgery is not an option then chemo may well shrink the tumor so it could be removed - if not there are treatments available that are holding patients stable for many months/years.  Currently great strides are being made in developing cancer vaccines and the trials for pancreatic cancer using vaccines are underway.  Pancreatic cancer is treated in much the same way as bilary cancer, the vaccines have allowed patients to live for many years.  I am currently researching into this and I will keep everybody on this site posted.  I am hoping to get my dad into a vaccine trial possible at a later date.

do not lose hope,

jules