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Hi Jack,
Glad to hear that things are going so well and you are enjoying quality time with the family. Some of our memorable family bonding times were while Mom was getting chemo treatments. Not sure if I would go as far to say life is better after diagnosis, but would say we can find some positives. If you can say “improved”- more power to you
Thanks for checking in.Happy New Year!
CatherineHi Jack,
Great to hear from you again and thanks for the update on everything. Hope that you were able to have a great Christmas and it does sound like a busy one you had! Great stuff! Hmmm, top of the table indeed. Quite a season this is turning out to be. Leicester, who would have thought of that!
All the best,
Gavin
Oh, Jack I am so excited for you and what a fabulous family you have.
I fully understand the weird good coming from CC.
One of my greatest memories about Teddy (we were only married 16 years) is that when he was in Home Hospice, every time a new nurse came he would say this is my wife, Lainy and we are on our honeymoon! Not that he was never anything but a romantic Sicilian but everything seems to have magnified meanings! ENJOY, ENJOYHi, it’s Gooner Jack here.
From being diagnosed just over a year ago and given about 4-6 months I am feeling as fit as any time in the past 10 years – a stent, stopping chemo after two sessions as I did not like the after-effects, September showed a build up of debris, so a replacement stent plus regular bloods (liver function) is all the external stuff – my consultant is really delighted with the biochemistry numbers now (as good as two years ago).
Tumour is close to liver so not operable, however Christies in Manchester is one of only two UK cancer centres that is getting proton beam equipment funded by NHS. It will be operational in 2018 and my consultant is ok to refer me for this highly specialised procedure if initial review shows a reasonable chance of success. A great target for me to maintain current progress.
Just had the best Festive break ever; all our 3 children, 7 grandchildren, and a new grand-daughter all at my son’s large house. Over 4 hours of opening presents, great food and not one single negative during the 3 days. On top of that my life-long passion for Arsenal Football Club sees them topping the Premiership table!!
Still too busy with family, work and occasional holidays with my wife to let any negatives enter my life. It’s a bit silly to say that CC has “improved” my life, but as an active 74 year old I sometimes think that without the initial prognosis maybe . . .
Best wishes to all
Gooner Jack
Hi all
Sunny mid-day in Manchester and mild for time of year.
Have been researching SIRT and feel it’s worth exploring if it is right for me.
Have been in touchk with my excellent GI consultant, and she wants to review with me in clinic this Thursday.
What I’m reaching out to you guys is to get some idea of questions I need to put to her.
Many thanks
GoonerJac
Hi Gavin
Same here; although before blockage and stent work I felt very well, now feel great and ready to resume running. Regarding stats, I guess Christies probably have about a half- many just letting life pass them by!! Not me I’m too busy to concern myself about anything negative.
Sunday’s draw was a bit of a let-down, but Aston Villa drawing with Man City means Arsenal are still joint top.
Take care and best wishes
GoonerJack
Hi Jack,
Yep, got to agree with Marion on this in that you are definitely in some of the best hands in the UK with much experience in treating patients with CC. The stent you have, metal one, is I think the same one that my dad had fitted and these are less prone to clogging than the plastic ones. This stent helped clear my dads jaundice up pretty quickly and as such he felt so much better once it started working as it should.
As to stats for UK, the last figures are for 2013 and there were 1965 new cases which was 3.4 per 100k of population. for 2010 – 2013 totals it was incidences 3670 males and 4217 for females. These are totals for the last 4 years.
Another stat….. 1-1 with Spurs on Sunday?? What was going on there?? Your bitter rivals as well, bet that hurt!
My best to you,
Gavin
Jack…..no doubt, you are in good hand. In fact, it can’t get much better than that. A tremendous amount of cholangiocarcinoma research is conducted in your country.
Hugs,
MarionJack, Good Morning, well over the pond it is Morning! I am a very tenacious 75 year young girl and when I see ‘ampulla of vater’ I perk up as my husband’s CC also included the ampulla as his was Distal CC (outside the liver). I have to say ampulla of vater always sounded to me like another planet. Teddy had a Whipple surgery for his CC. I either missed something here or am a tad confused but why did they elect not to treat your situation. I am sure you are under the best of care but your team hopefully consists of those who have treated CC. The Medical field cannot know enough of this monster CC if they have not treated it. My reasoning for a 2nd even 3rd opinion is that different brains and eyes sometimes see things well, differently. CC is not just cut and dried as there are new treatments coming along all the time. One can have the smartest people in the world looking after them but if CC is not their forte things could be missed or not understood. Trust yourself, the rest will follow! When first diagnosed you will start out walking slowly and before you know it you will be running with the pack!
Hi – Marion asked a couple of questions:
As I’m being looked after by 2 of the top UK hospitals (GI at Salford Royal and Cancer at Christies) I don’t feel in need of a second opinion; I have also got views on this by my son-in-law’s brother who is Medical Direotor at Gt Ormand Street hospital in London and his wife who is a consultant and lectures at London University. Both feel I can’t beat the quality of specialists I have around me.
Notes from my surgeon may help
“Urgent 2 week referral, definite cancer. WHO performance status 0. Jaundice. Clinically Important comments: ERCP for obstructing lesion in CBD. Brushings confirm malignancy (cholangiocarcioma). – Plastic stents in situ. Exchange for metal stent.
Cannulation via the the major papilla was successful, and to the pancreatic duct was not attempted.
BILIARY. Stricture: malignant length 3cm and with upstream dilation within.
Therapeutic procedures – plastic stents removal. Stent insertion . 10mm diam 8cm length Boston RX uncovered metal biliary stent deployed in an acceptable position with the lower end of the stent beyond the ampulla. Good biliary drainage obtained and small calculi also expelled. “Although I think I understand what has been undertaken, my education of my condition is growing fast (My own degrees were in Engineering and Business Management, my son – Biochemistry at Oxford – helps)
Observations and comments most welcome – GoonerJack
Gooner…….indeed, cholangiocarcinoma is classified as “rare” and – in the Western World – occurs in approximately in 1-2 patients per 100 000 per year. I believe it translates to about 2 – 3 thousand UK patients and 5 – 6 thousand US patients respectively. Southeast Asia has the highest rate of occurrence, but unlike the Western World, the cause is related to the liver fluke. Remarkably and for unknown reasons, the rate of extrahepatic (bile ducts outside the liver) is decreasing whereas that of intrahepatic (bile ducts inside the liver) is on the rise.
Hugs,
MarionHello, Jack. As for statistics, I know someone will be more helpful than I can be. So I will let them show me up! LOL
When you post you would fit right in under GENERAL DISCUSSION.
Good luck with your Soccer team. I too have a football game today for the Green Bay Packers…..GO PACK! Gavin doesn’t like that as he likes the Chicago Bears who we are playing on Thanksgiving.
When I have all the Kids, and Grandkids over for a Holiday, which is often, 2 rules are no TV or Cell Phones on. Well, this time the TV will be on at the BIG game starts at 6PM. Enjoy your game.Hi, just a couple of questions.
As a relatively new Cholangiocarcinoma “patient” I wonder how rare this condition is as many medical professionals in the UK don’t seem to have any experience or knowledge of it. Approximate numbers for US and UK would be great to know.
I am now posting more and maybe should have or go into another discussion thread – not Introduction as now?
Take care, GoonerJack – Big soccer match for Gooners (Arsenal FC) this afternoon at 4 pm UK time, wish us well.
gooner…….appears that you have a self expanding metal stent, which doesn’t block up nearly as often as the plastic stent. Tumor ingrowth, tumor overgrowth and biliary sludge is common. Sludge predominantly consists of cholesterol crystals and calcium. Stent blockage is a normal occurrence, but it can cause a life threatening bacterial infection (ascending cholangitis) which can be fatal. The Cholangiocarcinoma Foundation recommends all “stented” patients to download the biliary emergency card. This is especially important while traveling, as physicians may attribute the the infection symptoms to other diseases.
Please see below link:
http://cholangiocarcinoma.org/biliary-emergency-information-card/Glad you are feeling better and happy to hear that you are being tended to by a great hospital.
Hugs
MarionThanks for the great welcome, glad I joined group – you all sound to be very switched on. I recently had high temperature and jaundice – so up to my excellent GI consultants at Salford Royal Hospital. After CT and plenty of other tests (very high bilirubin) they arranged for GI surgeon who is specialist in this area to clean out bile duct stent of debris and put an extension on. Blood test after showed bilirubin back to normal and I soon felt great again. This is only “setback” I’ve had for about 8 months, anyone know what the debris is and how caused. Incidentally, the tumour is close to Liver and controlled. Bloods monitored every 2-3 weeks to check bilirubin etc; Consultants at Christies Cancer Hospital (one of top UK cancer centres) are more concerned about Liver function and seem to accept that tumour is controlled. Take care – GoonerJack
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