Topic: Treatment options in the UK

I am interested in other peoples experiences with treatment regimes, especially in the UK. What chemotherapy drugs are available and what works? Where are the cancer centres that specialise in cholangiocarcinoma? Thanks in advance for your replies.

Re: Treatment options in the UK

cps

chemo options in the uk are limited.  Most oncologists here regard cc as a rare cancer and consider that chemo is ineffective - they will refer to the lack of clinical trial data.

We have seen a few oncs in the uk (my dad has cc) Prof Cunningham at the Marsden specialises in gastrointestinal cancers.  You may want to consider a clinical trial - the ABC 02 trial offers gemcitabine OR gemcitabine and cisplatin, I believe they have about a 25% success rate (shrinkage of tumor and prolonging life expectancy).  There is also the gemcap trial (gemcitabine and capcitabine) - I do not have any knowledge of outcomes here, there is also the XL119 trial in Leicester..

my Dad had gemcitabine and carboplatin (which is better tolerated the cisplatin) off trial which kept his disease stable however he was quite fatigued during the treatment.  It also hammered his bone marrow and because his platelet levels dropped so much he is no longer able to have chemo, however he has changed his diet radically and his disease remains stable and he has a very good quality of life.  I don't want to put you off chemo - what works for one does not neccessary work for another - one thing that I have learnt since my Dad was diagnosed is to ignore gloomy statistics, patients are individuals and what works for one may not work for another.

Re: Treatment options in the UK

Hi cps
My husband has cc, he also was under Professor Cunningham at the Marsden and was on the ABC02 trial, he was having Gemcitabine only , this stopped the tumour from growing , but there was no shrinkage .
We had a 2nd surgical opinion and it luckily it was positive and he is to have surgery next week.
I would agree with Jules that chemo is regarded as mainly ineffective in the UK and that is it very important to seek as much advice as possible from as many sources as you can find
We too have learnt to ignore the gloomy statistics
Alison

Re: Treatment options in the UK

Thanks very much for the replies Alison and Jules. My mother has been treated with capecitabine but this caused a heart attack (her heart was weakened by rheumatic fever as a child). Her oncologist has not anything else to offer. I am thinking of getting a second opinion from Professor Cunningham at the Marsden. I have heard good reports about XL119, does anybody have any more info on the Leicester trial?

Re: Treatment options in the UK

Hi CPS
I have or should really say had bile duct cancer diagnosed in August of this year and operated on in October.  My surgeon was Mr Diamond in the Mater hospital in Belfast all I can say is he is brilliant, he carried out a whipple on my and i have no problems i was home in less than 2 weeks.  I was then sent to the new cancer centre in Belfast City hospital and I am due to start chemo in December they are giving me 5FU but there is very little info or trials done on bile duct cancer so this is their best guess.