Intra-hepatic diagnosis
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Hi Julie I’m another UK poster on here. Diagnosed Nov 2009 – whipple op, Bilcap trial and due for scan in August.
The intra-hepatic location contrasts with my extra hepatic tumour but with lymph node activity. I am Leeds based treated at St James’s by a team headed by Professor Lodge, Mr Smith and my surgeon Mr Krishna Menon. Oncologist is Doctor Swinson. The oncology network seems well connected in UK although the low diagnosis rate does mean great difficulty in recruiting for trials etc.
I consider myself at the fortunate end of the cc spectrum. I believe that a condition for entry to the Bilcap trial run I think from Southampton University was that there had to be a recovery from a surgical resection within a certain timescale. Of course it was explained to me that there is no evidence either way that my six months of capcitebane would make any difference as is the case with some other tumours particularly those of the bowel. But like you – it is a case of let’s try anything that might have a positive effect.
I think Maria’s post is particularly positive as she sounds to have been in a similar position to your husband.
I hope you too are getting support from here but also from others around you. Do keep us up to date with developments.
Malcolm
Hi Julie,
I would just like to welcome you to our cc family.
In the UK I found you really do have to push for the treatment you want, with second and third opinions, as it’s such a rare cancer. I second Marion in recommending http://www.ammf.org.uk, the UKs only charity for Cholangiocarcinoma. Lots of useful information and contacts on there.
Best wishes to you and your Husband.
Andrea
Morning all,
I can’t tell you how wonderful it was to log on this morning and see all your messages. Thank you all.
We live in Somerset and Hubby was diagnosed initially with secondary liver cancer at Weston super Mare General Hospital in consultation with the MDT at Bristol Royal Infirmary (BRI). We got a second opinion from Prof Cunningham at the Royal Marsden in Chelsea. It was he who advised it was primary intra-hepatic CC and recommended GemCis. We had one cycle of ECX before we had heard from Prof Cunningham and we then switched to GemCis for 2 cycles.
He had the chemo in Weston on the NHS. (We do have private medical insurance and so we checked that we weren’t in any ‘postcode lottery’ with what we were being offered and have been assured that we we aren’t.)
When Weston General said there was no more treatment they could offer as there weren’t any alterntives to GemCis. We again asked Prof Cunningham for a 2nd opinion and he agreed with them – also advising that there were no trials. Our Dr also requested Phase 1 trials from a colleague in Oxford.
Hubby isn’t jaundiced so he doesn’t need a stent. If he becomes jaundiced they will give him a scan to see if a stent would help.
PDT hasn’t been mentioned. Don’t know why – I’ll be picking up the phone later to ask…… I will also ask about BILCAP. Also the Helixor shot sounds interesting – and will do some research on this.
One thing I would like to mention is that we have had great support from the Penny Brohn Cancer Centre in Bristol who approach cancer holistically and they give great advice on nutrition, relaxation and generally ‘living well’. They have residential courses and encourage supporters to attend too – as they really appreciate that the battle is a joint one. I know I see this as ‘our cancer’ as I am sure those reading this website also do. Penny Brohn Cancer Centre is a charity so they ask for donations if you attend any of the courses etc. – so it is accessible to all whatever your financial status.
We have recently seen a Dr of Chinese medicine and hubby has been given some herbal medicine (to light his inner fire – I’m still waiting!!!) and acupunture.
Once again thank you all – although it is sad that we have all joined this family – it is wonderful to know you are all out there. Hoping those that you are waiting for news get a positive result. I’ll let you know how we get on.
Julie
Julie….this organization founded by Helen also provides a great resources for our UK patients.
http://www.ammf.org.uk/All my best wishes,
MarionDear Julie I am English with CCC. Isn’t this a fantastic website. So encouraging to have others to talk to. I am very sorry to hear about your husband. He is very lucky to have you by his side researching supporting and loving him.
I am just about to undergo something called the BILCAP Trial in London. I know it is offered all over UK. However am not sure if it is offered to advanced patients. You may like to mention it to your doctor. I will keep you both in my thoughts.Dear Julie, welcome to our wonderful family, sorry you had to join us. I bet your husband is a real sweetheart (14th Feb). I have a BFF and she was also born on the 14th FEB and even has natural red hair! I am wondering if the Doctor has considered another cocktail (Combination) of chemo drugs instead of just stopping now. As others have said we are BIG on getting other opinions. You have come to the best place to be for help and support and please keep us informed on your husband’s progress, we care!
Hi Julie,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband also. But I’m glad that you have joined us here as you have come to the right place for help and support, and you will get a ton of support from all of us here.
Yes most of the members here are from and based in the USA, but we do have a number of members from the UK and elsewhere and I am certain that they will be along soon to chime in with their thoughts. As Percy has said to you, I am from Scotland, and my dad was diagnosed and treated with PDT here in Dundee where we live. Where do you live, and where was your husband diagnosed and where did he have his chemo?
Has your husband thought about seeking a second or even third opinion, or have you already done that? My dads CC was also deemed inoperable from his diagnosis and he had PDT with a metal stent inserted. Did your husbands doctors mention any of the treatments that Percy talks about?
Keep coming back here Julie and please feel free to ask all of the questions that you have, and we will do what we can to help in answering them. And please let us know how your husband is doing. We know what you are going through right now and how you feel.
My best wishes to you and your husband,
Gavin
Julie….I would like to follow Percy and Nancy and welcome you to our site. Although quite extensive this link may provide you with some names of physicians in the UK
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126
You may have to search a bit as we have not been able, as of yet, to categorize according to countries.
We have several other UK members who hopefully will be able to guide you personally.
I am glad that you have found us. We understand and we care.
All my best wishes,
MarionJulie, My husband, who just turned 60, did 8 cycles of Gem/Cis. After 3 cycles he was reevaluated and the cancer had spread. They were going to take him off but I convinced them to try a little longer because his blood work had improved. They continued on that basis and the next 2 scans showed no advancement and his blood work continued to improve. He had his last chemo on May 18th and he goes for a scan on Thursday. Our fingers are crossed. He is advanced stage 4 with mets to liver and bones. Just wanted to let you know that it was after 3 cycles of chemo that showed results. Doug also has naturopathic support, taking daily supplements and Helixor shot (mistletoe) three times a week. Wishing you the best. Nancy
Hi,
Gavin lives in Scotland,I Think his help is valuable .you can connect with him.
What stage the ICC ? Besides chemotherapy,radiation,chemoembolization are other choices.2nd line chemotherapy like 5FU alone or in combination with other chemotherapy agents in the platinum group or with molecularly targeted agents like Tarceva are other choices.
As always,consult doctors for 2nd or 3rd opinions are highly recommended.
God bless.Hi,
My husband (49 and healthy) was diagnosed with Intra-hepatic CC on 14th Feb this year (good date eh?). He started Gemcitabine/Cisplantin a week later – 3 week cycles with both drugs on Day 1 and 8. After 3 cycles he had a scan and was advised that the chemo hadn’t worked and there was nothing more they could do. We have been advised that his cancer is advanced and aggressive and is inoperable. We have checked for trials here in the UK – nothing.
I came accross this forum and realise that most readers are from the USA but notice that some are also from the UK.
Wondering if anyone has any suggestions.
Thank you,
Julie
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