Welcome to Cancer Chat MissyMichaud1

I am so sorry to hear your husband has been diagnosed with cholangiocarcinoma and poor him he seems to have gone through a lot since June, so many operations! I am sorry as well to hear he may be needing to have more surgery: 8 and a half hours it certainly is a very long operation and I am sad to hear about the possible complications associated with it.

It must be really hard for you at the moment and I hope you will meet others here facing a similar situation who have had to make similarly difficult choices. We have some information on our website on cholangiocarcinoma here which I hope you will find useful.

Best wishes,

Lucie, Cancer Chat Moderator

I’m so sorry to read this. My partner received similar news yesterday, inoperable, because of where it is and drainage and chemotherapy being the only treatment plan, He’s 56 and 3 weeks ago was leading a normal life, just went jaundiced over a couple of days. He feels well but has clearly lost weight and looks very jaundiced. It’s heart wrenching watching him everyday and what must be going through his mind.  I feel bitter and sad , why us ?, we’re good people. I know I will get strength to be strong and make his life quality the best but I’m so scared for the times ahead and whilst friends are good, I feel so sad and lonely - life sucks.

P.s. we’re getting married in 2 weeks, simple registry office wedding, I’m determined to not let the curse of  cancer control things that day.

I'm so sorry to hear your now husband has this awful disease.   My younger sister was diagnosed last Thursday and starts chemo tomorrow.  She and we are devastated.  She is 58. I have so many questions to ask her but am afraid to.   I read an account yesterday of a lady given 6 months and was still alive and doing quite well after 6 - 7 years. 

I was diagnosed with stage 4 non operable Cholangiocarcinoma in Sept  2017.  I am sitting here getting my 27th chemo..  It has been a good 2 years, very little pain or nausea.  Not much energy but still functioning.  Just FYI, drank very little and never in area of river flukes, so no idea how I got this.  Just make the most of everyday.  I’m 69 so children grown and no financial worries.  I live in California.

This is  good to hear.  I really hope it continues. My husband is tolerating chemo well a few months down the line from my original post ,,,his Liver function and cancer markers are improved . Currently he’s awaiting results of scan to show if tumour has shrunk / slowed growth,,, but with his good blooods of late, I’m only hopeful it is an improved result too. Thankyou for your post, it is encouraging and helpful for me as at times I do get very anxious. Physically he is well , and other than tiredness from chemo there is no pain or nausea and leads a functional life. I wish you well . Once again, thankyou for posting your comments, it’s helpful to hear from others .

Hi,

My husband was diagnosed with bile duct cancer a couple of months ago. He is 32 and we have a baby. He’s never been a drinker, likes running and he looked like a young fit guy before he started his chemo. It has spread and pretty much covered his liver however his liver is functioning normally, he has no tumour markers in his blood tests and isn’t jaundice. He just had some pain and pressure that lead to it being identified. We’re hoping the chemo will shrink the tumours be make them operable so keep your fingers crossed. It’s reassuring to know people are living longer than the prognosis we were given. 

I was diagnosed Sept 2017.  I am 69 soon to be 70.  I am also in California.  I have had a good two years.  I take the chemo well.  I have just switched to immunotherapy.  My main problem now is fluid buildup in the abdomen, which is common with this disease.  I hope to get it drained this week, the sooner the better.  I doubt if I have a year left but that is up to the Lord.  I guess I should add, when diagnosed stage 4 nonoperarable had spread to the lungs and lympnodes.

Hi, I was diagnosed in Aug 2019 and at first given months then within a week was told I had weeks. I refused to give up and had chemotherapy on and off for 2 years now. The chemo stopped working a few months ago and I have been given a new chemo treatment which includes chemo tablets. It's only my 2nd cycle and I am waiting to have a scan. I know my body and don't think this chemo is working but I remain positive and will continue to fight. I am 53 and living each day at a time enjoying life. Never give up - that's what I say