Newly diagnosed with Cholangiocarcinoma

Hi Lil, lovely to hear from you!

Things aren't going so well for me now, unfortunately. I've had a major problem with Ascites, the buildup of fluid in my abdomen. Extremely uncomfortable, painful, debilitating and restricts my movement, eating, bowel and bladder function. I've had it drained twice in hospital, but it's built up again really quickly. Last time they drained over 7 litres, which is over 10% of my body weight, but now it's accumulating again. My consultant is arranging for me to have the procedure again, but this time for a permanent drain that would be looked after by visits from a District Nurse. This sounds good, so the sooner he can arrange it, the better. Hopefully next week.

Meanwhile my consultant doesn't think the chemo is actually working against my cancer, and may well call it off. I haven't heard any more about the new treatment, Pemigatinib, but will certainly ask him about it when I next see him, on Monday.

I even had to call off my long-planned trip to Scotland to see my son - I just wasn't well enough to travel. But all's going well with my daughter-in-law and her pregnancy, so I'm consoling myself with buying baby clothes and planning things for when my grand-daughter is born.

Hope all's well with you.

KJ xx

Oh Kay i am so sorry to hear that. You have been going through an awful lot. That build up of fluid is horrible, it looks so uncomfortable. I remember my Dad having something similar and it really effected not only his body but his mind. The permanent drain would definitely give you relief. 

You are being so strong. xx 

I am sorry you didnt get to travel over to see your son. Would have been a welcome break from everything. I am very excited to hear that they are having a girl :D . Lots of online shopping for you to do to get ready for the arrival xxx 

Take care and hopefully you will get some positive news on Monday x

Thinking of you KJ. Hope you’ve met your little granddaughter x

Hi, just read your post. My husband was diagnosed with bile duct cancer a year ago. He's had chemotherapy, which shrank the tumour a little and has now been prescribed pemigatanib. Did you have any joy with this at all. It seems the only thing available at the moment to help him. Thanks

Hi Charlie, my husband was diagnosed with bile duct cancer 2 months ago . It is in stage 4 . We have been told it’s incurable, heart breaking to say the least . My husband has never smoked or drink , just goes to shows doesn’t it . He now has yellow jaundice so we have to wait until they can put a stent in . We are seeing the oncologist on Thursday to see what the next are . Hope your husband has had more joy on pemigatanib

Hi. I am so very sorry to hear your news. I originally couldn’t find the words to describe how difficult incurable cancer is to cope with. I ended up with trauma. My husband and I felt shock, disbelief,denial, grief all at the same moment. You are right in that your heart is broken. Sometimes we thought we had post traumatic stress disorder. Nothing prepares you for the roller coaster. Like your husband, mine had been healthy all his life, eaten healthily and exercised both walking lots and at the gym, not overweight etc etc. I think that made it seem more unfair. We were looking foreword to a long life together and had joked about how we would be in our 80’s, we had also just learnt that we would be grandparents for the first time, making it even more sad. 
My husband was given 18 months to two years to live. He asked for a prognosis, which on hindsight I wish he hadn’t as cancer is so unpredictable. The was nearly exactly a year ago now. He started with chemotherapy, eight rounds. Which didn’t affect him too badly and did shrink the tumour by 2 cms. The oncologist thought it might be operable, so we even saw a surgeon who explained the operation. Then his MRI scan showed the tumour had grown again so no operation. Which was devastating again. Two weeks later they rang to say they had changed their mind and it might be operable. He had to have another MRI scan. Then they said it had now grown into the right hand side of the liver so couldn’t be operable. What a nightmare. 
However, luckily he was able to have the new medication called pemigatanib. He has been on this for two months now. His tumour has shrunk again. Not sure by how much as his M R I scan is coming up soon. Some mild side effects but nothing he can’t cope with as yet. The oncologist has said it should give him approx eight months before it starts to grow again. 
Cancer certainly stretches you to the limit. I had and am still having counselling, which I found extremely helpful and couldn’t have survived as well without it. So I would recommend that. 
I believe stents can be successful and relieve symptoms. I hope your oncologist is able to offer your husband some treatment. Will be thinking of you. 

Hi Charlie. My goodness you have had a rollercoaster of a time . I’m really sorry for the pain this awful illness has caused & yes it’s so unfair. How lovely to be grandparents, between my husband & myself we have 14 grandchildren lol & I’m only 59 yrs young hehe . Like you we have sat & talked about our retirement, the places we like to visit. My husband has only just retired. We haven’t started chemo as yet as hubby is having a stent put in next week, (waiting to hear what date ) we did get to see the oncologist a lovely lady called Georgina . She did give us some reading to do explaining GemCis , wow that’s something to look forward to ! . At the moment he has no energy & always tired so will now be on steroids. Did your husband have same symptoms? How do people cope with such devastating news !? I keep telling myself he will get better but I know it’s a battle to keep him here for as long as I can . I will be thinking of you & please keep in touch with your journey . It’s been lovely to chat to someone who is going through the same thing. Take care , stay strong. Always here if you need a chat xx

Dear Littlesis & Charlie,

I hope you and your partners are as well as can be, under the circumstances.

There is additional support available from the AMMF charity. It is the first charity to be dedicated purely to Cholangiocarcinoma. They are just finishing the last day of their annual conference and have the leading oncologist, surgeons and research attending.

Their website is www.ammf.org.uk and you can find links to their Facebook groups here - ammf.org.uk/helpful-links/

Also, there are about 550 of us patients on a Facebook group which again, is dedicated to Bile Duct Cancer  patients. People share their stories, experiences, look for help and advice from other patients. There are no doctors or nurses, purely patients supporting each other as best we can. There is also a dedicated group for caregivers/partners/family members.

If you haven’t come across these before, they may provide some help & comfort. I have been up against this cancer for 4.5 years and am Stage 4 and have found both these resources incredibly useful.

wishing you both all the best.

Hi Andy , thank you for the information to which I have asked to join two of them . I hope you are keeping well after fighting this awful c word . Keep strong & please keep in touch…… Mandy 

I was diagnosed last June and stented post chemo and radiotherapy and yes get the odd niggle but am generally well having been told I am terminal and require palliative care. My idea is not to go ahead of yourself. While you feel well enjoy your life and your family and when you feel poorly relax and let people look after you.