Topic: my mother has Cholangiocarcinoma

Hi I am Rhonda, My mother has been diagnosed with cancer for the past 12 months, I am now trying to get involved with others suffering the same cancer.'

Re: my mother has Cholangiocarcinoma

I have been reading quiet a few of the posts am feeling really sad for those of you who are suffering with so much pain and illness. I am feeling lucky that my mother has not felt sick or in pain,which  has been managed with medication ( mainly Panadol) My Mother has had Gemcidabean and another chemo drug, this was given every 3 weeks for a 24 hour period. Not to many side effects, and reduced the tumors on her liver and kidney slightly. Now she is having chemo weekly for 6 weedks with a 2 week rest and seems to keep the liver results (blood test) down, but she is becoming weaker. The family have been told the cancer is very aggressive and once chemo stops working my mum will have 2-6 months. I am finding it hard to stay 1 step ahead and be prepared for the illness and side effects of the cancer, but information is limited and the cancer seems so different for every person.

3 (edited by tiapatty Sun, 23 Nov 2008 23:24:47)

Re: my mother has Cholangiocarcinoma

Hi Rhonda,

Welcome to our little family, you have come to the right place for support and information so don't be shy in asking questions. How old is your mother and where is she being treated?

Patty

Re: my mother has Cholangiocarcinoma

thank you tiapatty,
My mum is in Qeensland Aus, She is nearly 61, We are heading to 12months of cc, My mum has secoundary tumors on kidney, lung and surface of head. The primary was not fully diagnosed, but the closest they came was cholangiocarcinoma.

Re: my mother has Cholangiocarcinoma

Rhonda

Welcome!  This is a great place for finding information and sharing experiences...I think you'll find a lot of helpful information and support.  I'm sorry to hear about your mom, but glad that she's feeling well despite all she's been going through.  And you're right, every one's experience is so different with this kind of cancer.  Are you in Australia as well?  I think you'll find that there are always others here who are going through or have already gone through very similar situations to yours.  And sometimes it just helps to write about what you're going through and know that people here really do understand.  I think you'll find a really great group of people here!

Wishing all the best to you and your mom.

Jean

Re: my mother has Cholangiocarcinoma

Rhonda,

Welcome to our world. You have come to the right place for help & support. As you already know, CC treats everyone differently & there are no set answers, but the people here are all willing to help & support you with information and knowledge of their experiences. This is a great site & a great group of people.  All the best to you & your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: my mother has Cholangiocarcinoma

Welcome Rhonda to the best little club in the world that no one really wants to join! Yes, the only thing we know for sure about CC is that it is so different for everyone. We also believe in 2nd & 3rd opinions so don't let anyone give up! The most important thing we all having going for us is HOPE. Please keep us posted.

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: my mother has Cholangiocarcinoma

Hello Rhonda, I`m new here too. Yes, the future can be scary...fear of the unknown and all that. Sometimes the more you know the scarier things can be. I have had four close rels die of cc. Some died in hospital and some at home. Okay so there was a certain amount of pain and suffering but on the whole the drugs for pain relief both in and out of hospital gave significant comfort. Hope you get some help here. I`m am here just to be able to vent when I need it.

Re: my mother has Cholangiocarcinoma

I believe what ties us together encompasses everything including, the success of treatments and the hope for advancement in research to the benefit of those who's life has been touched by CC. 
Hugs to everyone

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: my mother has Cholangiocarcinoma

hello to all, Thank you for the kind introductions. Yesterday my mother was told the cancer had ( met) to her shoulder, she is hoping to have radiation this week, & in hospital at present to start serious pain management.
I just wish we all new how to stay I step ahead of this rotten thing.
I have read that a lot of the patients with cc, have had stints in the bile duct, Is this common for later stages of cc, as my mum has no Jarundaise or bowel problems.

Re: my mother has Cholangiocarcinoma

Rhonda,

It is my understanding that a stent would only be necessary if the bile duct is blocked but I am not the most knowledgeable on the board.

I am curious how your mother's cancer was discovered? Did she have any symptoms at all? Or was it discovered by accident?

Patty

Re: my mother has Cholangiocarcinoma

hi Patty
My mums cancer was discovered by accident. She changed doctors because she moved, She was concerned with a few minior things, 1 being a lump under her eye that she had had for years, The doctor advised her to see a specialist and get it removed as they can be come nasty but looked fine at the time. She also had to see a surgeon about  an existing shoulder injury. She was feeling fine, but had some problems eating certain foods. My mum reguarly went for a walk, when she became dissy and slightly out of breath a couple of times, she returned to the doctor, She thought she was just getting worried about the ops, The doctor ordered chest scans etc, and found shadows on the lungs, blood test followed, which were not that bad, but slightly to high in the liver results, this lead to more test, and here we are today, 12 months later, with cancer all through her body. No yellowing, blotting and her colonoscopicy and endoscop were clear.
We have had a pretty busy 12 months of Chemo, but managed some special time too, trips away and lots of talks.