Hi Kris,
Great to hear your story too!  If it has shrunk that much already (and just work out the volume change in those measurements) then there's no reason why it can't continue to shrink more. Keep at it!
I met my radiologist tonight as my stents are now blocking, after 9 months.  He's going to replace them on Thursday, and is already talking of advances in technology where stents can last longer still.  But replacing stents once in a while is a small price to pay for being alive and healthy and cancer-free!
My best wishes - and thoughts - are with you.
Andy

Hi Joolz, Maria and Jim,
Sorry I've not responded before, but glad to hear your stories. Hope you are still doing well - I've now been 'free' and well for 18 months...
Andy

Hi Janet,
I don't know about your mother's overall health, but I was amazed that my chemo (with Gemcytabine only) had no side effects on me at all, at least for the first 5 or 6 cycles.  After then it messed up my liver enzymes, but by then my tumour was gone.  I know from others and my oncologist that Cisplatin has harsher effects, so maybe Gemcytabine on its own would be worth talking about?
Keep up your strength!
Andy

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

Great news - and if it can slow down maybe he can get it to shrink too?  Either way its great.  Best wishes to you both!
Andy

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(9 replies, posted in General Discussion)

Hi All

Thanks for your suggestions and support.  After rather a long stay in hospital (I went in for a couple of days, but actually spent most of January in hospital, as I got an infection in my bile duct, then got dehydrated, then got another infection in Gall Bladder, but all is now well) I'm now home again and loving being here.

In the end after several discussions we decided:
1. Not to put more metal stents inside the first ones (as what happens after another year or two? - we can't do it forever like that),
2. Not to just leave it - as it would clog up pretty quickly anyway,
3. So the only option left was plastic stents inside my metal ones.  This is now done, and all is working perfectly.  The only problem will be after 3 months or so when/if they block, as they'll need replacing again.  However this should be an ERCP thing, not a stabbing, so less intrusive.

There is another option we discussed, which uses a new bit of technology to clean the inside of the metal stent by cutting away all the cells and stuff sitting there.  As this is still new (at least here in my part of the UK) it's a bit experimental but sounds like it could be good.  Also done via ERCP so not intrusive.  Will keep you posted as to what we do next - but it will be a while or so yet as for now all is working fine.

In the meantime thanks again for your thoughts - and enjoy every day! 

Andy

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(9 replies, posted in General Discussion)

Hi - this is a query to any survivors out there with metal stents. 

I was diagnosed in Feb 2009, and the only option at the time were two metal stents + chemo + a range of alternative therapies (they don't do resections etc in the UK if you have potential secondaries - and I had three lymph nodes swollen). The good news is I'm now fine and cancer free (since November 2009) - you can read my story here: http://www.cholangiocarcinoma.org/punbb … p?id=4553)

The slight puzzle is what to do with my stents.  They just blocked over New Year so I was jaundiced (again!) and now have been cleared so bilirubin on its way down.
 
But does anyone else have experience of long-term metal stent management?  Mine can't be taken out as my bile duct cell wall has grown through the mesh.  I could have another stent inside it, but then after another 2 years where does that leave me?  And plastic stents don't work, according to my radiologist, as they clog up too fast.
So any info or ideas are welcome!
Thanks in advance,
Andy

Hi Jeand,
There's actually quite a few of us who are CC survivors, some much longer than me (19 months since diagnosis, 12 months since first all clear CT scan).  So it can happen!  My story is here if you want more: http://www.cholangiocarcinoma.org/punbb … hp?id=4553
Best wishes to you,
Andy

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

Fabulous news!  Best wishes for the future - and thanks for letting us all know.

Me too!
Andy

Hi Kathy,
That 1 day is now 1 month, right?  Keep on and it will soon be adding up.  I'm now 7 months over my sell-by date, and no sign of tumours anywhere.  So all things are possible.
Keep going!
Andy

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

Hi Lulu
Excellent news - it's such a fabulous feeling, isn't it.  I've just had my regular 3 month CT and still no sign of anything - now 12 months of being clear.  And 19 months since I was told it was inoperable, incurable, and my life expectancy was 12 months...
Don't believe the negative - positive is possible! 
Best wishes for you,
Andy

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(15 replies, posted in General Discussion)

I've just been catching up on CA19-9 as my values went down when my chemo and other treatments succeeded in 2009, but in 2010 they've gone up and down erratically.  However it seems that if your bile duct is blocked or inflamed, it secretes the same CA19-9 as a cancer even though there is no cancer there! A simple gall stone will do it.
References for this start with Wikipedia (http://en.wikipedia.org/wiki/CA19-9) and then go to:
http://www.ncbi.nlm.nih.gov/pubmed/10065510 (in 1999!) or more recently
http://www.ncbi.nlm.nih.gov/pubmed/17273004 (2007)
So in my case it has simply coincided with my stents getting blocked (CA919-9 goes up) then when they sort themselves out CA19-9 goes down again.
My relief is that it's nothing to do with cancer - I just wish one of the medics had told me in the first place!
Andy

Thanks for this - I guess I should have looked first!  There's also a lot of research going on in Thailand, given the hotspot of Northern Thailand as a global CC centre.  There's links from the reference I posted.
Thanks again,
Andy

Hi Narinder,
Fantastic news and thanks for sharing.  I've only been 18 months so far from initial diagnosis, so it's good to find others who have gone further!  And we did many of the things that you describe too - juicing, supplements and positivity.  The main difference is your dad had surgery and I did chemo.  But it seems like either way it can work!
Andy

There is a question bugging me since I was first diagnosed with CC - where did it come from?

Then I found that liver flukes can cause CC in some parts of the world -  see http://en.wikipedia.org/wiki/Cholangiocarcinoma for a general review, or http://www.plosmedicine.org/article/inf … BF0B2759DA for more details.

So if one possible cause is getting a fluke infection from eating raw fish in south-east Asia, how many CC patients have been there in the last 3-5 years, and eaten fish?

I visited Thailand in 2005, and ate fish (not knowingly raw, but fish all the same).  So for me the ulcer I got in 2007 and the CC in 2009 could have come from a fluke infection...

Anyone else the same?

Andy

Hi Andie,
According to my radiologist, stents can block even when there is no cancer.  It seems that if the bile fluid gets too sticky and viscous it just stays there.  Then back pressure in the liver may force it out, or it may require minor surgery to unplug it.  But drinking plenty of water keeps it fluid (and is good for you anyway!).
Best wishes to you and your mom,
Andy

Hi All,

Thanks so much for your positive responses.  It really does make a difference to know others care and are supporting you. 

For those that want details of what we did in terms of supplements and diets, I've now posted them here:
http://www.cholangiocarcinoma.org/punbb … hp?id=4557
There's a lot that others have already posted, but I hope the references and sources are useful.

Best wishes to all for a positive future!

Here's my story so far