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Cholangiocarcinoma survivors?

pjc3618
Posts: 5
Joined: Nov 2006

Anyone with a liver resection done and doing well? Would love to hear from you as I had this procedure in jan. of 06 and so far no problem. please let me hear from any of you as I see many who wrote on this cancer have not written for some time. My best wishes in all your battles, Pat

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello Pat,

I encourage you to do a search of the CSN site (entering Cholangiocarcinoma in the search bar at the top of the page). You may find others who have had a similar experience that you would like to contact. You can contact others on the site through the internal CSN email system. For more information on all of the CSN functions, including email, click on the help link at the top of this page.

It is great to know you are doing well!

Take care,

Dana

CSN Dana

egale
Posts: 2
Joined: Nov 2006

Just to let anyone interested know that my mother, who was diagnosed with unresectable bile duct cancer in July 2006, appears to have responded to treatment with Nexavar. We got her an off-label prescription, which she began taking Nov 6. She lasted 11 days, until the side effects became too much for her. She tried lowering the dose twice, but finally gave up on January 24th. Effects included hair loss (almost total), and very bad skin rash all over, especially in sensitive skin areas (inside her mouth, in her ears, around her eyes). HOWEVER - subsequent scans appear to indicate some recession of the tumour, though she will have an endoscopy in the next days to try to confirm what's going on. Though the Nexavar side-effects beat her up a bit, they receded pretty quickly (1-2 weeks), and she says she feels 'normal' right now. It's worth pointing out that a trial of Nexavar for treatment of Primary Liver Cancer closed early last week, due to very positive outcomes in terms of survival rates vs the placebo. I will keep you posted as to my mother's progress over the next few weeks. So far, so good...

stephj3207
Posts: 1
Joined: Sep 2007

Egale - Just curious how your mother is doing?

zie11
Posts: 1
Joined: Oct 2007

hi egale, my mum was diagnosed with bile duct cancer 1 month ago, doctors have said it in inopreble shes @ stage3, shes 62 active and has very young grandchildren and is the carer of my dad who is mentally ill. we so distraught she is due to start kimo which consists of-cistaplatin and 5 flurouracil,but i ve heard it doesnt respond very well to this sort of cancer, im so desperate to save her,i would like her try nexavar as it was effective for your mum, i no its not up to me but could you please give me any details on who to speak to about this any info much appriciated,also we live in england staffordshire

amylea
Posts: 2
Joined: Jun 2007

Hello, My mom had the procedure November 1, 2006. She had chemo and radiation February-April. She is doing great. Had her first follow up at the end of May. Goes back July 31st. How are you doing?

AZTom
Posts: 2
Joined: Jan 2008

Hi Pat, yeah I'm alive and doing great. Was diagnosed in 10-07-06, Stage lll cholangiocarcinoma, had surgery,oral chemo and radiation(novalis),removed cancer but left a positive margin in the liver, radiation seemed to have burnt out the remaining margin,16 months and no recurrence. I was shocked when I found out I had it. After surgery I interviewed three oncologists, two of them basically said I was screwed, with the one telling me to go talk to my priest and that it would not end well for me. The third doctor said forget everything I had heard and treated me. I'm now feeling great, I get CT scans every four months just to stay on top of things. My real estate carrer is lacking, nothing to do with the cancer, just a crappy mkt. After what we went through that's the least of my worries. I tried a few of these web-sites but they seemed to make me feel worse than better, very depressing, but I'm glad I found this one Good luck and keep moving forward. Talk to you soon.

tflahvin
Posts: 1
Joined: Jun 2008

Aztom, I read your post with interest. Good luck. What is the name of your third doctor and how did he treat you?

moncap
Posts: 1
Joined: Jun 2008

Hi, my father got a surgery back in October and was doing well for a while; however, recently he developed jaudice and infection...they looked at his liver/bile ducts, etc., and the surgery seems to have been a total success...they do not seem to worry too much about these symptoms...did you experience anything like that after your surgery?

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