• From: Perth, Western Australia
  • Registered: Wed, 27 Jun 2012
  • Posts: 10

Topic: Intrahepatic Cholangiocarcinoma

As I write and introduce myself for the first time, my heart aches for each and every member and their families whom have been diagnosed with Cholangiocarcinoma.

My incredible strong mother was diagnosed with Intrahepatic Cholangiocarcinoma in May 2012. Our hearts have been broken since then and the tears for me flow silently each and every day since that dreaded day in May. My mother however, who is the “rock” in our family has continued to smile each day and has given my family the strength to continue to fight this cancer. My mother is 60 years young and has only ever been in hospital three times in her life and this was to have her three daughters of which I am the eldest with two younger sisters. Recently my mum and dad celebrated 40 years of marriage and my folks welcomed in their fourth grand-child and first grand-daughter into the family.

My mum’s only symptoms before her diagnoses were a three/four day change in her urine and jaundice once she was admitted into hospital. Initially we and the Dr’s were hoping that it was gallstone related but once an MRI was completed our worst nightmare had begun. After a biopsy and further testing we were told that a resection of the liver was not an option and the cancer had spread to three lymph nodes outside the liver. At this stage all other organs are healthy with no signs of any tumours. A metal stent was place in mum’s bile duct and she was told to go home and commence chemotherapy.

Mum’s chemotherapy treatment plan is Gemcitabine (Gemzar) and Platinum for a few hour/s each week for three weeks of each month. After the first three months of chemotherapy mum will have a MRI scan to see if the treatment is working or at least holding the tumours.

As time of each day is precious to us now, I have been searching the internet (which can be very overwhelming and depressing I must say) for Clinical Trials and as there seems to be none in Australia at present. Has anyone had any luck with any Clinic Trials in any part of the world with Intrahepatic Cholangiocarcinoma. If so I would love to take this to the Oncologist and or email the hospital conducting the trials directly and see if a miracle could be waiting for my family.

X

  • From: Revelstoke BC
  • Registered: Sat, 01 Jan 2011
  • Posts: 552

Re: Intrahepatic Cholangiocarcinoma

Hi,  I understand your shock and grief. Did they say if the cancer cleared from the lymph nodes your mom could be a candidate for resection? CC has it's common symptoms and complications but it is individual when it comes to response to treatment. It seems the most common drugs used are gemcitabine and cisplatin, but as you will see on this board many other concoctions have been used as well. Some respond to to one type of chemo , some to others. There have been some to have enough success with chemo to qualify for a resection, that is why I would question about that. Sounds like your mom has half the battle won with her attitude. Stay strong, there have been battles won and there are many on here that the chemo is keeping the disease at bay. Sending you positive thoughts for a positive response to chemo for your mom. Nancy

Loving my husband from afar.
  • Gavin
  • Gavin
  • Moderator
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  • From: Scotland - Dundee
  • Registered: Tue, 23 Sep 2008
  • Posts: 4,841

Re: Intrahepatic Cholangiocarcinoma

Hi There,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your mum. But I am glad that you have joined us here as you will get tons of support and help from us all here. I know how you feel right now and what you are going through as I felt the same after my dad was diagnosed. It can be tough to do sometimes, but please stay strong as your mum will need you throughout this.

My dad never had chemo of any type so I can't help you with some personal experiences there, but many of our members of their loved ones have or are going through the chemo regimin that your mum is and there are tons of posts on the site about that. We also have a great chemo board here and I am sure that others will be along soon to share their chemo experiences with you. And we also have some members here from Australia and I am sure as well that they will be along soon also.

Do you know that we have a clinical trials section of the site that lists many of the current trials available but I am not sure what if any right now are recruiting in Australia. The section can be found here -

http://www.cholangiocarcinoma.org/clinicaltrials.htm

My dad also had the metal stent placed to help clear up his jaundice and it worked well for him. It took a bit if time to work fully but it did, and getting rid of the jaundice also cleared up that dreaded itching. I hope too for your mums stent to work well also.

Please know that we are all here for you and know what you are going through.I am sure that you will have questions so please feel free to ask any that you have and we'll do what we can to help in answering them. And please, keep coming back here and let us know how things go for your mum.

Best wishes,

Gavin

  • From: Perth, Western Australia
  • Registered: Wed, 27 Jun 2012
  • Posts: 10

Re: Intrahepatic Cholangiocarcinoma

Hi Nancy

We were told whilst mum was in hospital having her stent put in the bile ducts that a resection could be an option for mum should the cancer clear from from lymph nodes, but we won't know if the chemotherapy treatment is successful until mum's 3 month scan.

My only concern here is that when we asked about the resection should chemotherapy be successful with the lymph nodes, they didn't seem very positive. It was almost yes we can do it, but it's unlikely that it will happen given the nature of this type of cancer.

So once again, we have all our fingers and toes crossed that the chemotherapy is working and that mum will be able to have a resection of the liver. I pray for this outcome each and every night, however just one day at a time...

Kylie
X

  • From: Perth, Western Australia
  • Registered: Wed, 27 Jun 2012
  • Posts: 10

Re: Intrahepatic Cholangiocarcinoma

Hi Gavin

My mother's stent is working very well now, thanks for asking.

I look forward to hearing from other Aussie's (Australians) with their loved ones story and or an association with Intrahepatic Cholangiocarcinoma.

Thanks for the heads up on the clinical trial link. Will endeavour to search through.

Kylie
X

  • From: Perth, Western Australia
  • Registered: Wed, 27 Jun 2012
  • Posts: 10

Re: Intrahepatic Cholangiocarcinoma

Hi Liz

Thanks so much for your kids words.

Kylie
X

  • From: NSW,Australia
  • Registered: Sat, 14 Feb 2009
  • Posts: 558

Re: Intrahepatic Cholangiocarcinoma

Hi Kylie,
            I think your mothers illness is being managed exactly as it should be and you will just have to wait to see what the response is to chemo.The resection is a possibility but realistically it is a slim chance only and that is why the doctors temper their response.
  Having said that,cancer and cc in particular is hard to predict....why people get it and why some people and not others respond to treatment is what we would all like to know so you need to be "opimistic but realistic" at this point.
   With regards to clinical trials it boils down to numbers and our population is not big enough to find enough participants with a rare cancer like this who would then fit criteria for a trial,specially not in W.A.
   Well done to find this helpful,supportive site                    Janet

  • From: Perth, Western Australia
  • Registered: Wed, 27 Jun 2012
  • Posts: 10

Re: Intrahepatic Cholangiocarcinoma

Hi Janet

It's nice to hear from a distant person that mums chemotherapy is being managed exactly as it should be then. It's always hard to hear, even though we have had two opinions on treatment. Mum lives three hours south west of Perth at the choice of oncologist was very limited for us.

So we wait for the next scan and see how mum responds to chemo.

Thanks
Kylie
X