Introduction
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Posts
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Kay……I too would like to chime in, welcome and congratulate your on your husband’s fantastic response to treatment.
Hugs,
MarionThanks very much All – yes Lainy a sense of humour definitely helps- chemo is now referred to as Kemosabe (a la Lone Ranger) in this house). I’d always imagined it was it was a word for friend but have since discovered the actual meaning is ‘who knows’!! That’s about right!!!
KayHi Kay,
Welcome to the site. Sorry that you had to find us all here and sorry to here about your husband as well. But glad that you have joined in with us now as you are so in the best place for support and help and will get a load of both from all of us. Please keep coming back and let us know how things go.
Glad as well that you have got in touch with Helen at AMMF as she will be a great help to you as well, especially with things that are purely UK related. I am from the UK as well, up here in Dundee.
That is real good news about the 3cm tumour now not being seen, excellent! Keeping my fingers crossed for more good news for you with everything!
Looking forward to hearing more from you.
My best to you both,
Gavin
Dear Kay,
Welcome to our group. I’m sorry your lives have been turned upside down. However, it sounds like you’re doing everything possible to get the CC under control. And, many here were also given the grim survival statistics and have far surpassed them. I hope the treatments continue to keep the positive results coming.
Catherine
Dear Kay, I like your blast away! A good new expression on our Board. You WILL find that a little sense of humor and optimism will get you through much. I have a cute story for you to tell your hubby. Teddy wore his Cholangiocarcinoma.org bracelet all the time. We went to our favorite Italian Restaurant with a couple visiting from Milwaukee and the friend asked Teddy what his bracelet said and Teddy always had trouble pronouncing it. So he said, “oh, that’s my Cancer”. Teddy was Sicilian and very good at making up some words! His friend said, “but what is it called”. Teddy answers, “Angelo Carcinoma”. OMG! I had to walk away as I thought I was going to laugh right out loud! Leave it to my husband to make his cancer a Sicilian!
Thanks Lainy. When we got the diagnosis they said as all the lymph nodes were affected (including even the one up under his collar bone which they sampled with a needle biopsy) that it was inoperable. He’s at the start of cycle 6 today so I hope it will continue to blast away!
Hello, Kay and welcome to the most remarkable family and the best place to be for CC. Such good news about your husband’s response to the Chemo. YIPPEE! We have learned not to listen to statistics as you will see if you have some time to read some stories on our site. AND it appears he is also pretty accepting of the chemo as well. NICE! Did the ONC tell you that they could do surgery if hey got the tumor down. Trust yourselves, 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! Please keep us updated on his progress and wishing you the very best.
Hello everyone. My husband (an otherwise very fit 66 year old) was diagnosed at the beginning of November 2015 after a couple of weeks of feeling a bit under the weather and then suddenly becoming jaundiced. He was diagnosed with an extrahepatic tumour with extensive nodal mets. The hospital in Stoke fitted a stent with a few days and then we were given the prognosis of a few months if we did nothing and the possibility of 8-12 months with GemCis – a complete nightmare to say the least! ive been trying to find out as much as I can about the condition and would like to really thank you for this site as the information has been invaluable – I’ve also emailed Helen at the AMMF (for those in the UK) who was a brilliant help. Anyway we’re a a few months into the chemo regime which seems to be pretty well tolerated and were really dreading the half-time scan results but then finally we got some good news; the 3cm tumour in the bile duct now can’t even be seen on the CT scan and all the enlarged nodes have reduced in size. We still can’t quite believe this, as we weren’t overly optimistic given the prognosis, but we’re doing well (all things considered) and after a few months of hell its such a relief to get something celebrate!!
Thanks again for all the info you provide here – it really is a massive help!
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