Hello Danni80

My heart goes out to you, my husband was diagnosed with this in January, he had high gamma serum levels from July 19.My feeling is it could have been dealt with quicker, although, it is a silent cancer and rare to be found early days. Kev was told he had 6 months without chemo and maybe a year with chemo. He is 61. I have researched this so much and spoken to many macmillan nurses about it. His is inoperable as he has secondary in his liver and swollen lymph nodes

He has had chemo 4 times, which side affects were mostly vomiting and naseau and tiredness. They put his chemo on hold 5 weeks ago because of virus, he has had increasing pain lately so hoping they say tomorrow that he can go back to chemo. We are fortunate that his oncologist specialises in Bile duct cancer. If you are not happy you can ask and insist on a second opinion. Also there is another website dedicated to Bile duct cancer Ammf and it has lots of information and tells you about any trials coming up.  Hope this is helpful big hugs Christine. Xxx

P. S being given a prognosis of how long a patient has left is not accurate it is an estimate based on other cases and the aren't enough cases of cholangiocarcinoma/bile duct cancer to be given an exact time. As with a huge amount of people on this website, people live many years past there given time. Just do today, that is all you can do and Macmillan support are brilliant and have a wealth of knowledge, please get into with them, they will help your mum to get benefits. Xxxx Chris 

Hi Chris sorry for the delay in responding. Thank you for taking the time to message me. My Mum has now started Chemo, yesterday was 2nd week of 1st cycle. The side effects so far have not been too bad no sickness  just at times very very tired but that comes and goes. I just feel forever worried, but i completely agree every person is diffeent so I try not to focus on the prognosis and deal with now. They started treatment as found suspicious nodes on her lungs which were concerning apparently very small so their hope is if it is a spread they can get rid soon. The emotinal side for Mum can be hard and I wish she had someone to talk to face to face but due to c virus the centres are closed so she cant speak to anyone and being her daughter i fear she holds back when speaking with me as doesnt want to hurt me.

Our hope now is we can keep the cancer where it is and live for now rather than thinking what may happen and when.

Hope your husband is doing well and thank you again.

Danielle 

My husband was diagnosed with stage 4 bile duct cancer exactly 12 months ago.  He had 2 doses of GemCis and then had an arterial blood clot so had to stop chemo for 6 weeks.  He resumed treatment again but only on Gemcitabine.  Luckily he had very few side effects and carried on the treatment for 7 months until lockdown.  During the last few months I investigated several clinical trials and we went to 3 hospitals to discuss these trials.  He was not suitable for one and doing too well on the Gemcitabine to be considered for a clinical trial.  When lockdown happened he had stopped responding to the first line of treatment and the second line of treatment they had offered him was also halted.  Clinical trials also closed down.  I have fought for the last 6 weeks to get him seen again at the hospital and finally, after the intervention of our GP, he was seen in clinic.  He now needs fluid draining from his abdomen (which he should probably have had done a couple of weeks ago and I am hoping that he will be fit enough for the 2nd line of chemo in a couple of weeks time.  The oncologist agreed that my husband had done amazingly well and went on to say that he did not expect to see him live beyond 9 months.

What was very useful was finding out the genetic mutations in my husband's cancer which means that, had lockdown not happened, he could have had targeted therapy in a clinical trial.  I believe we are just on the cusp of some exciting breakthroughs in cancer treatment.  

Don't give up.  It is so hard to keep going as a carer and I have cried my heart out many times.  My husband is now weak and feels very helpless.  Take all the help you are offered, stay strong and keep fighting.

My husband has just spent 3 days in hospital having fluid drained from his abdomen.  He was quite weak and very emotional when he came out of hospital.  We are now 2 days on from being home and he is feeling better and I am managing to get more food into him.  He had a CT scan while in hospital and they have bought forward his next visit to the oncologist.  Next week we will find out if and when he will start on FOLFOX.

I would add that I think we were mistaken in thinking that Macmillan were only there for end of life care and I wished I had spoken to them sooner and we might have got the fluid drained  sooner.

Keep asking questions, keep pushing, keep in touch with Macmillan, keep feeding and keep hoping.

Hi

Mums half scan showed that the cancer has stabilised, Mum is now half way through cycle 4 and is doing well. The set backs have been infections which she seems to feel getting infections a month we guess that the stents Mum had fitted back in March are causing these infections. Hope your husband is doing well? I'm hoping end of treatment will have shrunk the tumor and Mum can have a break and we can plan some nice things, I recently turned 40 and Mum was in fine form considering. 
I keep researching and hoping

best wishes to you and your husband