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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: 1560
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

stella359
Posts: 4
Joined: May 2017

hi wat is an off-label prescription and how do u get it? 

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?

godleadtheway
Posts: 2
Joined: Jan 2015

Hi Amylea, my name is Nina. I read your last post and was wondering how your mom is doing? I pray she is doing great! My dad also got a liver transplant last October and he is scheduled to start quemo tomorrow I have been looking for information but Im having a really hard time finding liver transplant patients any info you could provide would be greatly appreciated. If you would like to call me my cell phone number is (832) 537-1607 or you can send me a msg or an email at amina.duarte@yahoo.com or I could call you if you prefer just send me your number. Thank you so very much. God bless you and your mom. 

 

With all my love

Nina

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?

Lostdaughter32
Posts: 1
Joined: Nov 2016

My mother was diagnosed with cholangiocarcinoma in aug.  she has stopped wanting to eat and no energy. She isolates herself and I'm losing hope. Does anyone recognize these traits and can offer some encouraging tips on how to pull her out of this rut. im afraid she s giving up. 

1MrsNoz
Posts: 2
Joined: Dec 2016

Hello Lostdaughter32,

I am a Lost Mother.  My 28 year old son was diagnosed with stage 4 intrahepatic cholangiocarcinoma Dec. 1st.  He is currently recovering from a liver resection in which lobes 1-5 and partial 8 were removed.  His bile duct and lymph nodes were also involved.  How is your mother doing now?  My son is losing spirits as he is losing energy and weight.  He wants to return to his young healthy self and is despondent about the effects this crippling disease has had on him in one short month.  

Please give an update on your mom.

FamilyforJohnC
Posts: 3
Joined: Feb 2017

Hi All.

So about 4 weeks ago my father was taken to the hospital for having an elevated heart rate.  The ER team struggled to lower and stabilize the heart rate.  He is a relatively healthy 68 yr. old despite being an asthmatic and having Crohn's Disease.  After they had his heart stabilized, they diagnosed him as having an irregular heartbeat.  His magnesium and potassium levels were quite off which the team struggled to stabilize.  The doctors tested & explored only to reveal he had some cysts in his kidneys along with lesions on his liver.  The lesions were malignant but no source of the primary was located.  Long story short he will begin Cisplatin & Gemcitabine this Friday morning.  He just had a pet scan completed and we are waiting for the results.  Looking to be Bile Duct or Gallbladder - advanced stage 4.  I find strength and hope by reading some other survivors stories and hope I can continue to update this with good news moving forward.  Being his 37 yr. old son and not the patient, I cannot fully understand what he is going through but I know this is the most scared I have ever been in my life (and not much scares me).  All of his loved ones are searching for hope, strength, and positivity anywhere or anyway we can.  I wish you all the best of luck and admire and respect the courage and strength you survivors and family members of survivors have.  Please don’t ever stop fighting because these forums and sites give the strength and ammunition we need to keep fighting. 

Thank you!!

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