Topic: Intro , I suppose

Hello all. Jon from the Uk (London) "peripheral" CC is my diagnosis , though that  doesn't seem so rare on this site , ( tumour in liver ). I was discovered by accident and as yet have no symptoms. Can anyone say what that means ? Is it tumour size or length of time that gives the problem ? I have been told that it's incurable , although links on this site suggest there is always hope surgery-wise.

I was only diagnosed this March , and am having trouble differentiating between what feelings I have are treatment related (Gemcitabine ) or symptom related.

I recall a consultant from 3 months back saying that if they hadn't discovered it then  , that I would have symptoms now , but who knows ?

For the record , I,m 3 months into chemo ( 6 month course ) and the latest scan shows a "stable" tumour ,( NO , SHRINK YOU B**G*R).

Words of encouragement gratefully accepted big_smile

Re: Intro , I suppose

Hi Jon,
What is 'peripheral' cc?
What stage is it?
Stable is good though shrinking is better!! think positive.

Are they considering a resection?

Which hospital are you at? and who is the consultant?

My husband was treated initially at the Royal Free in Hampstead and then at UCH

Patricia

3 (edited by ukmember Thu, 06 Jul 2006 01:58:43)

Re: Intro , I suppose

I did a search and found
http://www.ajronline.org/cgi/content/ab … 165/6/1427
which says,

'This essay reviews the appearances of peripheral cholangiocarcinoma and discusses the various imaging techniques that can be used to evaluate this unusual tumor that is often resectable and potentially curable'.

That's encouraging!!  Good luck to you

Re: Intro , I suppose

jon,

I am sorry that you are having to face this disease however I wanted to let you know that there is hope and there are weapons available to fight it.  Surgery is the best option and can be curative.  You should get some surgiical opinions, you need to consult someone with alot of experience, this is difficult surgery.  We are in the UK, my dad was diagnosed with cc last july and had a resection october 05.  His surgeon is the best in the UK (we consulted alot of people abroad and here at home everyone spoke highly of Prof Peter Lodge).  Every Dr that we have consulted has said something different - you just need to search out the ones that are willing to help.  Prof Lodge's details on on this site (under experiences - i think it was one of the first postings).

Where are you being treated? - are you having anything in addition to the gemcitabine?

take care, Jules

Re: Intro , I suppose

Ukmember , hi , I believe "peripheral" refers to the fact that the tumour has manifested itself in the liver as opposed to the bile duct.

I don't think I've been "staged" as such . I have no symptoms as yet , though I believe the tumour is large comparison , so presuably long standing.

I a currently at the Marsden in Sutton , under Professor Cunningham's team.

Jules , I have read your experiences and already intended to look up Peter Lodge. I don't know how it works , can he just ask my current consultant for the latest scans etc.?

I am on tthe "ABC02" trial which compares Gem only against the benefits of Gem + Cisplatin. Unfortunately I drew just the Gem

Re: Intro , I suppose

Hi Jon,
I wouldn't be concerned about just drawing the Gemsar. Our nurse liaison at the Royal Free was research nurse on the stage 11 of this trial. She advised us not to go on the trial and just to have the gemcitabane which was the standard treatment at the Free. She said although the gemcitabane is well tolerated, cisplatin has nasty side effects for very little overall gain.

Prof Cunningham is regarded as the leading light in liver oncology and I don't think you can do better than the Marsden, so it looks like you are in good hands. 
Good luck eith your treatments
Patricia

Re: Intro , I suppose

jon,

my dad was offered to take part in the abc02 trial - he drew the gemcis combo, we then found prof lodge and so my dad dropped out of the trial before he started.

my dad is currently on gemcitabine and carboplatin which he is tolerating really well.  carboplatin is a 3rd generation platinum drug so better tolerated then cisplatin. 

The best thing to do with regard to getting second opinions is to send the scans and an up to date report to the consultant concerned.  Prof Lodge will read scans on disc.  we keep copies of my dad's scans and notes with us - this is probably the most reliable way to do it.  I just send copies wherever needed.

Good luck - any further queries feel free to ask.

Jules

8 (edited by marions Mon, 10 Jul 2006 11:57:03)

Re: Intro , I suppose

Hi Jules,
so nice to hear that your Dad is doing well and that he is tolerating the chemo.  How long is he to be on it and when will he go for his scans?
Our thoughts are with you and your Dad.
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Intro , I suppose

Jon,
Have you investigated having surgery?
If you can find a surgeon who believes you are a good candidate for surgery it is almost always the best course for extending the quality of your life.
Try a search on this board for 'surgery', or something similiar and you'll find a good bit of information.  The other UK members have the best knowledge of what is available to you on your home turf.
Best of luck.
-Peter

Re: Intro , I suppose

marion,

this wk my dad completes his fourth cycle of chemo and then he will be having a scan..

my dad has gained weight and apart from a bit of fatigue due to low hb he is active.  He now has a hernia belt which has eased the abdominal discomfort caused by the hernia, he also has a good appetite so we are very encouraged.

I don't know how long he will continue on this chemo - we have options if it isn't working - to take place in a early stage trial, we are also meeting with somebody else this week in london to discuss newer treatments that could extend to cholangio - that my dad could try.

at the moment the pace of cancer reasearch is moving quickly, i believe that we just need to hold things stable and these treatments will be available to my dad.  In the meantime we are enjoying the summer together and just so happy that we are able to do so, my dad has outlived all the gloomy predictions from drs so far - long may it continue!

Jules

11 (edited by marions Wed, 19 Jul 2006 19:57:27)

Re: Intro , I suppose

Jules,
You and your Dad are such an inspiration to us.  Thinking of you two.

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER