Thanks folks...I still start with the Good News page on here...and a thread such as this...but just great that you maintain your comforting responses to the Introductions page .... hope you appreciate how much it helps...

Just about three years since I heard the words "it's cholangiocarcinoma".

Seen two new grandchildren arrive and several European vacations plus lots of good times. Still working. Still swimming and walking...I will run a 10k next year..perhaps...

Still enjoying fabulous autumn colours...still feeling amazingly fortunate...

http://www.guardian.co.uk/lifeandstyle/ … y-when-ill

An article written by a UK journalist on her own cancer journey that I think worthy of a wider audience  - particularly the 'need to fight' dialogue that I agree was really much more of a submission to the best skilled medical attention (and support from cc foundations and charities such as this and AMMF in UK) and to depend on their fight and quest for knowledge

Malcolm

4

(10 replies, posted in General Discussion)

Yes indeed this is/was me (again! ).

The article was done for cc awareness month in Feb and was delayed somewhat.
Great when you get calls from folks who start by saying...'I heard you had been not well but I had no idea.....etc'

The article had a couple of questions that surprised me and which Helen of AMMF corrected particularly the binge drinking and diet reference.

I sometimes look at articles such as this and wonder..."is that really me ?' !

Malcolm

5

(14 replies, posted in Good News / What's Working)

Thanks very much for all the congrats etc.

When I was struggling - I always went straight to the Good News Section and hope others are doing the same right now.

I also took great comfort from the senior posters on here who reminded me that in considering the odds around cc "you're not a statistic - you are YOU"...do keep reminding new arrivees here of that please .....


Percy - I'll try to recall the chemo - will need a bit of thought but I'll get back to you. Part of the Bilcap Trial is the completion of a questionnaire which includes many of the areas of interest to you. I did mean to ask Helen of the findings from this aspect which must be available or logged somewhere. I recall Helen pointing out the Xeloda is used because of high tolerability levels and that was my experience in general. I remember being interested in the drop out rate from the trial due to side effects - again she may have answers for you.

6

(14 replies, posted in Good News / What's Working)

Yes indeed "still here" and "still on here" after a two year all clear scan.

Are clear-scan days always sunny days or is there something else going on here I wonder !

The walk into the consultaning room after a one hour wait is one of the longest ever but when walking in the opposite direction with positive news it is the shortest imaginable. "See you next year" has never been so welcome a phrase.

Katja had the celebrations on the table when we get back ... but grandson Joe not impressed at all ... we've got sunshine and a soccer ball....what else is important?

Oncologist sketched descending survival graph with horrifically steep drop over first couple of years - as we know only too well from this site and from AMMF in UK -and then a flat lining over subsequent three years.

Posted with major feelings of personal good fortune

http://www.pancan.org/section_facing_pa … nzymes.php

Creon at 40000, 25000 or 10000 seems to work for me.... and I seem to be able to eat within reason as before ... fried greasy or fatty ... main problem is keeping a source with me and remembering to take them ... my wife's handbag certainly comes in useful...!

I looked up 'warrior' after Lainys memorable comment above.

My dealings with Helen via fund raising have been very unwarriorlike indeed - wonderfully supportive.

But I find that the term has become figuratively associated with 'courage' and 'vigour' and Helen certainly this in abundance and more.

Thanks Lainy for recognising what we in the UK have known for some time.

Malcolm

Richard - your wife sounds to be in a similar position to me in Nov 2009. Stent in place and bilirubin level reducing but very slowly indeed not dramatically - White eyes last to come back - itching went much quicker.bilirubin level has to be way down before op for blood comparability reasons I recall. Whipple op at St James's Leeds in Jan 2010. Bilcap Trial Chemo offer followed (Xeloda / capecitebane ) I agreed and I was in the arm that took the tablets not the arm where nothing was given. One year scan post chemo next Friday.
Lost a stone in weight and now put two back on! Fully active so far after 3 month whipple recovery.

I would be more than happy to chat with you or your wife by phone or email and give you some inside info - I benefitted greatly from an hour with a young medic who said a couple of memorable things to me. 1 the whipple op is big time but if you are reasonably fit it is long because it is "a bit fiddley like sowing wet fish together"!! And 2. You will wake up with more tubes attached than you could ever believe but you generally get rid of one every day or so.

I could go on but Jim is dead right in assuring you that your wife appears to be at the lucky end of the cc spectrum by being a surgery candidate.

As the supporter of your wife on this journey it can be tough - my best positive wishes to you.

Malcolm

10

(14 replies, posted in General Discussion)

Hi I'm another non US who dips in and out of here. I've had the standard UK response of the capcitebane arm of a trial for those diagnosed with a resectable tumour. It was made clear to me - although a bit of a shock at the time - that this was an attempt to prove an unknown outcome.

Our financially challenged 'free at the point of delivery' health service will only introduce or agree to new treatments that are based on clinical evidence. Also survival rates for most cancers in the UK are not particularly impressive. So there will be variations in treatment across Europe too.

Looking at Helen's figure of 1500 diagnoses per year in the UK there are only a fraction of those active in discussion groups - a high proportion of those being the important group of carers.

As I am currently doing well I naturally feel my treatment route was the best possible and because of the small (but very important!) number of posters here there is no way of being sure of the experiences of the vast majority of those diagnosed.

Which is why your post is of special interest to me. My best wishes to you and I hope others contribute too.

Malcolm

11

(11 replies, posted in Introductions!)

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

12

(16 replies, posted in Introductions!)

Cindy Very interested in your post. I am the dad Katja referred to. As she mentioned I was on the capecitebane arm of the trial last year. Two year scan due in August at St James's Leeds.

Your question about cc coming back will be uppermost in your mind right now - but one thing I have realised is that you should be very grateful for your meeting with your astute doctor - getting to 'first base early' seems to be a universal point in any favourable outcome with cc or any other carcinoma.

As for moving on and putting it behind you  .... I was / am able to get to what I called an "I'm ok today - and that's what counts".

I think I would say yes you can move on - I have just got back from a break in the Lakes with a walk over Catbells on a gloriously sunny day - I really thought days like that were behind me when I was in your position last year.

Do keep us informed of your progress and your position on the Bilcap trial. If you are on the capecitebane arm we would be more than happy to give you all the info you need.

Like Kate, I hope you are recovering well. We have found the network of oncologists and the treatment in the UK for cc to be perhaps a little more focused without the concern for second opinions or searches for centres of excellence - and of course we don't have insurance or financial worries as an additional concern.

Just a word of support too for Helen Moremont and AMMF in the UK. She is a real champion of the search for some answers. I was so pleased to ge able to raise some funds for them - more details google 'justgiving malcolm robinson'

My tip for using this board - start on the Good News / What's Working page. That and the 'power of cindy' is just what you need right now.

Malcolm

Kris - someone on this site reminded me that we are not just part of single negative statistic so assumptions good or bad may or may not important.

I hope today has had some light and laughter for you .... that was generally my initial approach .... I'm roughly ok today and that's what matters...not getting carried away in either direction ...

The good folks on here will be invaluable in supporting you along the way .... my only tip on using the board is to visit the Good News What's Working threads regularly !

The Times of London recently published a Health Supplement around the idea of 'living with cancer' - an increasing number of people find themselves in this position all over the world.

I wonder if that pattern holds true for cc?

The generally positive articles are together here - they published the supplement around about the 5/6th April - scroll down if others have been added later.

http://www.thetimes.co.uk/tto/public/si … amp;pf=all

Personally I was interested in one article suggesting that a fresh look at Wikipedia is being undertaken by Cancer UK due to its prominence in google searches and also the one about 'what happens when the hospital treatment stops?'. '5 Myths' and 'will I get back to normal' were also helpful for me.

There may be some guidelines/rules/helpful thoughts in the information that assists some of you supporters and providers of assistance on this forum.

There will be some interesting comparisons to be made with the UK where our survival rates are not amongst the best in Europe or Australia

Malcolm

Thanks all.

I recall when I was first diagnosed that with careful selection Kate was able to find information on the internet related to cc that gave a degree of optimism for those around me that there was a chance of a way forward and that a whipples was surmountable.

The accounts on the Introductions Page are humbling and hard to read. My current place on the fortunate end of the cc spectrum is something that I reflect on daily but.....

I do hope that a percentage of others looking for a good news story gain from this post.

https://picasaweb.google.com/malc2073/A … April2011#

We did it!

Do hope that the link works to give you an idea of a memorable day.

Hi Alex

I'm a whipplee (is that a word!) from Jan 2010 so in the same club as your mum but without the resection - tough route to have to take and hard for those like yourself too. 

The 'stages' thing can be as scary as the 'return' thing from another recent post.

Maybe an alternative stages thing is a 'quality of life stages'. I'm in a good stage - Stage 1 - and hope your mum is too.

Malc

I was distal bile duct cc diagnosed in November 2009. I had a whipple op at St James's Hospital Leeds. One year scan positive. I am currently at the fortunate end of the cc spectrum.

I  am planning on going up my favourite hill in the Yorkshire Dales -just round the corner from where the Calendar Girls started their amazing awareness raising activities if you have seen the film. I am taking my one year old grandson with me on his first birthday.

All details are at www.justgiving.com/Malcolm-Robinson0

I am fundraising for AAMF the UK's only charity dedicated raising awareness of cholangiocacinoma - a link to the AAMF website is on my just giving page.

I post this not as a direct request for a donation but simply to highlight for others with the diagnosis that positives do come out of adversity and as a thank you for the Good News / What's Working page of this Discussion Board - which is always my first port of call and possibly that of others on their cc journey too.

Malcolm

19

(14 replies, posted in Good News / What's Working)

Thanks Lainy

I'll let Katja and Matt take the credit for the 'beautiful baby' bit.


You can see from one of the pictures that Joe and me are already reading to each other - do you guys have Peppa Pig over there? http://www.peppapig.com .

You may not believe it but we are actually reading 'Peppa Pig goes to College' (Mummy and Daddy Pig are feeling broke)

Malc

20

(14 replies, posted in Good News / What's Working)

Thank you Nancy.

AMMF http://www.ammf.org.uk
is the only charity in the UK dedicated to cholangiocarcinoma. The full title is the Alan Morement Memorial Foundation. AMMF often mentions our friends on Cholangiocarcinoma.org as an important source of support and comfort.

It is run by a wonderful lady called Helen wife of Alan who died in 2001. She works tirelessly to raise the profile of Cc and to fund research on this side of the atlantic. She is a really important champion for those diagnosed and their families.

My fundraising event is on my grandsons' first birth when Joseph and I will be climbing Pen-y-ghent in the Yorkshire Dales http://en.wikipedia.org/wiki/Pen-y-ghent.

I never imagined that I would ever see the marvellous view from the top again when I was diagnosed so you can imagine my excitement at taking our new arrival along for the ride.

He was born three months to the day after my Whipple op and three months was the minimum time that my surgeon said I would begin to feel something like normal - the oncologist unfortunately put an end to that target when I went on the capcitebane trial running in the UK for six months!

I have a fund raising page gving all the info at Just Giving http://www.justgiving.com/Malcolm-Robinson0 where you will see Joe and myself getting in some practice - although I have to confess we were walking on a dead flat beach when this pic was taken.

I'll keep you all posted on how we do.

21

(10 replies, posted in Good News / What's Working)

Three and a half years - that's just given me a lift if nothing else.....I'm one year down the line...."da do Ron Ron Ron" !... & you of course Nancy.

I echo your final sentence too.

Malcolm

22

(14 replies, posted in Good News / What's Working)

Thank you - I do have to admit to feeling comparatively at the fortunate/lucky end of the Cc spectrum

23

(14 replies, posted in Good News / What's Working)

One year scan - positive result - phew what a 5 day wait from scan to result

60 th birthday round the corner on St Patrick's Day too.

Drove back to see my grandson and guess what....the sun came out and the spring flowers opened up !

Malcolm

Thank you Sara - I suppose it is google and its tendency to throw the site up near the top of any list.

Hi Andie - greetings passed on as Kate is here for Sunday meal and we are watching grandson take his first steps - priceless.

Sorry to hear of your dad's experience. The Wikipedia page knocked me sideways, backwards and upside down in two sentences

Thank you for your good wishes. I do feel well right now if a little tired from at trip to Twickenham to watch the rugby yesterday!