May 25, 2007 at 12:47 pm #15618
Sorry I did not get back to you earlier but I have just been released from my local hospital after spending about a week there with suspected heart problems. This started last Friday when I statrted having sharp chest and back pains. After many tests and discussions with Professor Evans at the Beatson, the doctors are of the opinion that the Xeloda brought on spasms of one of my arteries and this caused the pain. It was similar to the artery having narrowed. Anyway, I stopped taking the Xeloda on Saturday and this will continue until my next appointment with Professor Evans on 5 June.
Information about the trial is available from CancerBACUP (Tel: 0808 800 1236) or on their website at:
I believe that Prof Garden is directly involved with the trial and that Edinburgh Royal is due to participate in it.
My surgery was done by Mr Powell on each occasion. I certainly have nothing but praise for the standard of care I have received in Edinburgh. The Royal is the Centre of Excellence for liver work and transplants in Scotland. You could not have been in better hands.
The best of luck to you.
RonMay 21, 2007 at 6:56 pm #15617devoncatMember
Just wondering if you had Prof. Garden as your surgeon. I had the best experience with him. I actually went back to Glasgow for a wedding when I got sick and was diagnosed with cc. He did my surgery in Edinburgh and after several months I went back to my partner in Sweden. I am very interested in the study you are on. Everything is very haphazard since I moved back to sweden. I havent seen an oncologist yet and i had my surgery in JAnuary. So I have been researching stuff myself which has only managed to frighten the beejeebees out of me. I would really appreciate any information on the trial.
KrisMay 17, 2007 at 10:23 am #15616
Thanks for your good wishes.
I will not be receiving any additional chemo as this is a clinical trial to see the effects of giving chemotherapy after surgery. I believe Xeloda was chosen since it has been shown to be successful following surgery for colorectal and breast cancers. I don’t know but, is there a similarity between the cancer cells for these diseases and cholangiocarcinoma? At the end of the trial it will be seen if giving chemo has been an advantage, detrimental or makes no difference.
I know that in the USA, chemo is given in some cases but has there ever been any scientific trials to show if it works?
All the best
RonMay 17, 2007 at 12:33 am #15615jeffgMember
Hi Ron ,
Just wanted to wish you the best with the Xeloda treatments. I start cycle 5 this coming Wednesday. My first cycle was a little to much and had to cut back on dosage. No problem since then, just some numbness and tingling in the fingers and can’t touch nothing cold or drink cold drinks for a few days. Are You having any additional chemo with it? I’m having Oxalaplatium(SP) by way of IV day one and then start 10 days of Xeloda pill form. After third cycle my tumor marker dropped 40%. Next CT will be in three or four weeks from now. Although I had a complete bone scan five weeks ago and discovered mets to my 10th rib on the right side I think this treatment has been doing some good. Time will tell. Got all the time in the world right?
Keep on Rolling!
Jeff G.May 16, 2007 at 9:06 pm #452
Anyone who has read my previous postings will be aware that I was diagnosed with intra-hepatic cholangiocarcinoma in July 2006 and underwent partial resection of the right lobe in August. Recovery was very good but, in line with generally accepted treatment, I received no chemotherapy. I had a first post-op CT scan in February 2007 and this showed 6 lesions on the right lobe and a subsequent PET scan confirmed these as being the only cancerous cells. On 28 March the whole of my right lobe was removed and again I have made a good recovery.
This time I was referred to the Beatson Oncology Centre in Glasgow where I learned about a new clinical trial starting in the UK. This trial is called BILCAP and is a research trial evaluating chemotherapy in patients following surgery for biliary tract cancer. Funding is from the Cancer Research UK charity and is being run by the Cancer Research UK Clinical Trials Centre in Birmingham, UK. The aim is to see how effective chemotherapy is in treating the disease after surgery. The drug being used is Xeloda.
360 suitable people will be invited to take part in the trial. A computer will randomly select 50% to receive the Xeloda and the other 50% will receive nothing. The Xeloda will be taken over a period of 24 weeks. Both groups will have regular hospital check-ups and scans and the follow-up period for the study will last for 5 years. The fortunes of both groups will be compared during this period to see if there has been any significant difference.
I am very pleased that I have been selected for this trial and am in the group who will receive the Xeloda. I started taking it today (2,650mg twice a day) and so far so good. My view is that I have nothing to lose but everything to gain. If the Xeloda does not work, or if I have to stop taking it, then at least I have tried something positive and am not just sitting about waiting for the next CT scan. But if it does work then, hopefully, I will be around in 5 years time when it is given as standard treatment and be able to think that I contributed to that breakthrough.
All the best.
- You must be logged in to reply to this topic.