Hi Genevieve

If you could please give me the Dr's name and contact details that would be fanstatic. My mother's condition is still very good and flying from Perth to Sydney would not a problem at all.

Thank you very much for sharing this information.

Kylie
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Hi Marion,

Your memory serves you well, my mum does have a mental stent once she was diagnosed.

Can the stent be removed if surgery is an option.?

I was thinking of having mum talk to her GP with regards to maybe a referral to a surgeon for a consult.

Kylie

Hi
Last week my mother had her six month PET scan and has just finished her cycle of Gemzar. My mother’s oncologist has just placed her on Xeloda as my mother’s platelets have been low the past few chemotherapy treatments.

Initially when my mother was diagnosed we were told that a resection was not an option as the cancer had spread to three lymph nodes. Based on the reports from the PET scan last week the interpretation of report is:

a)
Mild interval decrease in activity and extent of right liver lobe disease. However, significant metabolically active disease is still present in the liver.

b)   
Interval resolution of FDG-avid left internal mammary and porta-hepatic adenopathy

c)   
Mild residual activity in small left supraclavicular, left peri-coeliac and right retrocrural lymph nodes are equivocal for post-therapy inflammation versus residual low-volume metabolically active nodal disease.

Has anyone had experiences where surgery has become an option with the same or similar results as my mothers (understanding that each and every CC case if different). My mother’s oncologist still saying that surgery is not an option.

Regards, Kylie

Afternoon All

I am seeking help for an email contact details for a Dr Tomoaki Kato. I would like to make contact with Dr Kato and given the time zone differences between USA and Australia, I was hoping to make first contact via email.

Thankyou
Kylie

Hi
My mum was diagnosed with Intraheptic CC in May of this year and she too had trouble with her first biopsy. Mums first biopsy results can back inconclusive which was very distressing for all concerned, especially mum. Not only were my mums biopsy inconclusive, but she also has a bleed. After a week later and a lot of pain and discomfort mum had another biopsy and the news we did not want to hear came to us. We were told that a biopsy was the only way to clarify what time of tumor we were dealing with.

Mums tumor too is inoperable so a mental stent was inserted into her bile duct and within a week mum was at home resting with hardly any jaundice signs. My mum started her chemo four weeks later (June) with Gemcitabine (Gemzar) and Platinum.

Thinking of you and your family at this difficult and frustrating time.

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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
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Hi Liz

Thanks so much for your kids words.

Kylie
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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
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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
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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.

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