As a prolific searcher of these internet forums when my mum was first diagnosed, I realise there is very little available about bile duct cancer on the internet, so thought I would share my mum's story to date. It's a bit of a long one, but she's had a few types of treatment, so hopefully some of it is helpful.
Mum is 59 years old. She was diagnosed with stage 4 bile duct cancer in May 2018 and given a year to live. It is inoperable. She's still powering through at the moment, so I hope I'm not jinxing anything by sharing this!
Mum was diagnosed following a routine blood test for a blood condition she has. The doctor noticed that her liver function was low. She then had a number of scans escalating from an ultrasound to an MRI. A month or so later we got the devastating news that mum had stage 4 bile duct cancer, which had spread to her liver. Her liver had a number of tumours, including one over 10cm.
It was incredibly scary to hear. My mum is my best friend, and I just couldn't fathom that I might only have a year (or less) with her.
However, my mum is also the most positive and determined person I know, so threw herself into treatment with the aim to live as long as possible. We all just had to get on board with the positivity and help her as much as we could with that aim.
The first batch of chemo mum had was the usual gemcitabine and cisplatin. Mum tolerated it fairly well. She generally had a bad day 4 days or so after chemo, so knew to take it easy on that day. She also had a variety of side effects (most of which I have a feeling she played down). Predominately these were going to the loo based. She also got tumour pain and had sensitive skin. Not being able to sunbathe over the summer was probably her least favourite thing!
She had a small bit of tumour shrinkage on this chemo, but mostly it just kept things stable. She then had a break between September and January after finishing her 6 cycles (2 weeks on 1 week off).
Having a break seemed like an odd thing at the time. It seems unnatural to not be treating such an aggressive tumour. But her doctor explained how your body grows a tolerance to chemo. To be honest, it was also good for mum to have a break from hospitals. You really do have to try and do normal and fun things so that your whole life doesn't become cancer and hospitals...
January brought the news that the tumours were growing again. Her doctor suggested a different type of chemo called Folfox. I think mum had this one every other week. It also involved carrying around this very clever pump thing in a bum bag for 2 days which slow released part of the chemo concoction into mum's picc line.
The main side effect mum got from Folfox was cold sensitivity. She had to wear gloves and a scarf even when going to sleep. I used to wind her up that she looked like a snowman. You've got to keep the humor going! I think mum has never fully regained the feeling in her fingers after this treatment. You might say she no longer feels it in her fingers (just in her toes...). The bad day also became a couple of bad days on this one.
After 6 rounds of Folfox mum had another scan in May which showed that although the massive tumour in her liver hadn't grown, she had small tumours showing in her lungs. Apparently this meant that the chemo wasn't working, so she stopped having Folfox. It was quite a frustrating time. It seemed so binary to stop it just because of the tiny lung growths, given that the bigger problem was being kept at bay. But I'm no doctor and I wouldn't want her to suffer through chemo if it wasn't working.
So then we were left with the murky world of clinical trials. I should add that my mum was generally still fit and healthy (other than the large amounts of cancer..), so we really tried to use the treatment breaks to go on holiday, do fun things, and just get on with living life generally.
Clinical trials had been mentioned before (e.g. before mum started Folfox), but nothing ever seemed to come up. I was therefore very sceptical and decided to work on the assumption that they wouldn't happen and mum just carries on living the best she can with cancer.
Then two trials came up at once. All very exciting, you would think. But I would say that you really should read the clinical trial literature carefully and ask lots of questions before jumping in to clinical trials. Just because it is your only option, doesn't necessarily mean it is a good option. You might think "what harm could it do", but when you have limited time left, the quality of that time is also important.
The first trial was a complete dud. It was brand new, had never been tested on bile duct cancer, involved a week hospital stay in isolation and all of the side effects of chemo for an unlimited time period. The priority of the trial seemed to be to test how the body tolerates the drug, rather than to obtain tumour shrinkage. We decided that this really wasn't for mum. It wasn't in her interests to make herself sicker when there wasn't even a slight guarantee of any benefit.
The second trial looked more promising- it had at least shown results for her type of cancer. However, when we got to the Christie, they explained that it was only for a specific gene mutation that 1% of people have. Not great odds!
They did offer her another option of being genetically profiled and then put on a database. Mum said it's a bit like a dating site - doctors who are doing trials for specific types of genes search you on it and pick you out! So mum did this instead.
Then in June, mum started to get jaundiced, together with her biggest and most unbearable side effect to date- itching! I honestly felt so awful for her. She was just itchy all day and all night. I can't even imagine. She was also being sick pretty much every other day.
Her doctors said she needed a stent as she had two blockages. This was 3 days before we were leaving for a cruise for her birthday (a birthday we never thought she would see!). So she put it off until she got back and dealt with being itchy and sick and hiding her yellow eyes with sunglasses on the cruise..
When we got back, the radiographer was going to talk mum out of getting a stent because of the risks. He said looking at her file he would have thought 12 months when she was diagnosed was an optimistic estimate. Then he met her and realised that she was a) otherwise fit, healthy and massively determined and b) totally miserable with the itching and sickness. He agreed to do it, but explained she was at high risk of sepsis and bleeding.
He ended up putting in an internal, external biliary drain. This had a bag attached to her side where the bile could drain. It can also drain bile the usual, internal way. The procedure went well. The biggest side effect was pain where the tube comes out.
She was discharged a couple of days later, but then a couple of days after was suddenly incredibly sick. She had a 38.8 temperature and was fully shaking and being so sick. I ended up calling an ambulance and they quickly diagnosed her with sepsis. What followed was our first stretch of mum being seriously ill since she had been diagnosed. She had 3 days in the ICU as her blood pressure was super low. Then another 5 days on the ward. She was later told she had a 30% chance of dying. Very scary.
It didn't end there though! Once she was discharged, she started leaking bile out of her side around the external drain. I was changing her dressing 5 times a day. It turned out that she needed a wider drain wire. This was fitted, which solved the problem. She was told she might get sepsis again. And low and behold, it happened! She's still in hospital now after another 8 days of admission, but is hopefully getting discharged tomorrow.
In the meantime, they've capped the end of her external drain, and the bile seems to be flowing normally internally. The itching is gone, her appetite and normal colouring is returning, and she's no longer being sick. So even though it's been a horrendous month, it really has been so worth it. Hopefully she can get her life on track a bit when she gets out.
The Christie have found that mum has a gene mutation that they have a trial for (FGFR). They need her to be infection free and for her liver function to be okay, but it sounds cautiously positive. They do seem to be making strides with gene specific treatment generally. I can only hope it works and allows me to spend more time with my mum. I would definitely recommend gene testing if it is an option for you.
I'm not going to lie, it's not been the best year. Sometimes I think everything has become about cancer. I lost my grandad to lung cancer a couple of months ago, after he was diagnosed a mere two months before that. I also live an hour plane ride from my mum, so there has been a serious amount of time in airports and working remotely. Clearly it has been much, much worse for mum though, so the more I can do to help, the better.
However, I've also done some wonderful things this last year with mum. I'm also incredibly grateful that she's still around. I realise that although she's been really unfortunate to be diagnosed with this type of cancer, she has been lucky (and worked hard) to live this long. I can only hope it continues. She has a lot to live for, with her first grandchild on the way in January (from my brother, not me - I don't have time for dating!).
I hope this is helpful even to one person. If your relative has been diagnosed, try to stay positive around them - you can be as sad as you like when they're gone. But don't keep it bottled up- talk to other people if you can. If you've been diagnosed - try to enjoy your life as much as you can and keep your chin up. This is a rare type of cancer, you never know what's going to happen. Determination and positivity obviously aren't everything, but I really do think they help.
Hi Kslice and a very warm welcome to the online community although I'm sorry you've had to find us.
Thank you very much for taking the time to type up such a detailed explanation of how you and your mum have coped with her diagnosis of bile cancer. I'm sure the members of this group both now and in the future will find it very informative.
Wishing you both all my best
Thank you for sharing your mother's experience with Bile Duct Cancer. It gives me a little bit of hope for my husband who has been diagnosed with the same cancer. His treatment has had to be stopped for a while due to a blood clot. We have an appointment to see the oncologist next week and hopefully the chemotherapy will resume. I was trying to get an answer from oncology a couple of days ago to see when this might be but I found everyone I spoke to very unhelpful. They suggested I spoke to a counsellor when all I wanted was a rough idea of a timeline for resumption of chemo. Having been given the dreadful news that he might only have 12 months to live I feel we are losing precious time. We had to wait 5 weeks before chemo started in the first place and now we have lost another 5 weeks and maybe more before we can get back on track.
I too have researched as much as I can online and we have been to the Christie to discuss clinical trials. I am very pleased to hear that your mother has met the criteria for the FGFR trial and I really hope it goes well. My husband has currently undergoing investigation to this trial - with the luck we have been having this year I am beginning to lose my optimism.
Evening to you and your Mum. I was diagnosed with stage 4 the same as your Mum at the end of January last year. I had always lived ( in my opinion) a very healthy life, exercising, diet, very little drink etc. So like your Mum this came as a big shock. I have had stents in now for 9 months but itching has now started again. So possibly they may need changing. I am due for a review February with my specialist so we will see.
Having read your post, I do hope that your Mum is getting on as well as can be expected and I agree being positive and getting on with life is all we can do. My thoughts are with you all. God bless. Px
Thanks for sharing your story, sounds like a a real roller-coaster for you and your mum, both physically and emotionally.
I've just been diagnosed with stage 3 cholangiocarcinoma, and am due to start chemotherapy in the next couple of weeks. As a young-ish dad (46, with 2 kids 10 and 14), it is pretty terrifying to get this diagnosis, especially when it's not something you are likely to have heard of.
It's reassuring on some level to know that there are other people going through the same thing.
Good luck with the rest of your mums treatment.
My husband went through 7 months of chemotherapy relatively well. So well that a couple of months ago the oncologist said they had another treatment that they could offer him. 2 weeks ago the latest test result came back to say that the chemo was no longer working and due to COVID 19 they could no longer give him any further treatment. I fully understand why and I accept it. In the last 2 weeks he has got weaker and is in more pain and I just do not know what to do anymore. I think that this is the beginning of the end and I feel so alone and helpless. The result of the family is a long way away and everyone is locked down. I am heartbroken.
I'm so sorry to hear this. It must be incredibly tough for you, especially in the circumstances. Sending all my best to you.
In relation to his pain, are you in touch with your local hospice at all? When mum was getting tumour pain about a year ago, they were incredibly helpful with trying to manage it. If you haven't approached them already, it can feel a bit daunting at first, but it doesn't have to mean the end. If there is ever a time to say yes to the drugs, it is dealing with this kind of cancer!
Sending you and your husband my best wishes
Hi Kslice, how is your mum doing, my husband is waiting to see if he is suitable for fgfr treatment but is terrified of what he has read about the side effects. Although can't say his gemcis side affects is great. Would be interested to know about your mum, I have sent you a friend request in case you don't want to answer publicly.
Hope all is well and thank you for the above post about your mum's journey. Xxx Chris
Mum is currently doing really well. Thought I would answer publicly in case the information helps anyone else.
She had a bit of a difficult start to the treatment. The tablets raised her phosphate levels and it took them a while to get those sorted. We ended up stuck in Manchester for a week after she was admitted after one of her routine appointments with a kidney problem.
She also had real problems with constipation and ended up in hospital because of that for a bit too.
She's now on a lot of phosphate binder tablets every day and routinely takes laxatives. So mostly those issues have been kept under control with lots of medication. It was just a real bit of trial and error to get her there. The problem is that not many people are on this treatment, so even the Christie were making it up a bit as they went along. There definitely was a point where she was tempted to give up. It's really hard with trials where there are no guarantees and you can't decide whether it is going to be worth it or not.
The other side effects she has been left with have been hair loss (she had to shave it off, but it is growing back), a lot of mouth ulcers, her nails are coming off and the skin on her fingers is peeling off and painful. So fairly similar to chemo in some respects, but for a more constant period of time.
So that's the bad news. Worth noting that your husband might not have these side effects and/or might have different ones. The trial literature listed nausea as a side effect, for instance, which mum hasn't had.
In terms of the good news, it is actually working for mum at the moment. Her tumours have shrunk 29% in total and the 5th one they were monitoring has disappeared completely. We found out on Monday that the radiologist can see signs of calcification (which is apparently tumour death) inside some of the tumours too. I'm not seeing her at the moment for obvious reasons, so this was a boost. The Christie and the Isle of Man hospital have worked wonders getting her medication to her and arranging for her routine tests to be completed on the island (which has closed its borders).
Hopefully that helps. Not an easy journey (and I wouldn't want to sugarcoat that for you), but mum has got to see her first grandchild and is approaching her two year cancerversary. So it could definitely be a lot worse.
Good luck and keep well.
Hi, thank you so much for detailed reply, I will share it with my hubby and it may help him when he makes his decision, although we don't know if he has the gene yet and his chemo is being held back at the moment because of virus, thanks again.
Best wishes Chris xx
Thank you for sharing this - a very similar pattern to what my boyfriend has been going through over the past 3 years.
He is 25 now and diagnosed with cholangiocarcinoma in march 2017 - though it took a very long time to get that diagnosis after many tests. It is still only suspected to be the primary - they can't know for sure. He also had the same cisplatin/gemcitabine combo in 2017 and 18. He was meant to have the liver stent but they decided not to go ahead because of the mets in the liver - so he has had multiple ascitic drains as an outpatient instead.
He also went down the clinical trial route once the chemo stopped working positively, having been on a drug called TAS-120 since August 2019 - he had the gene mutation present. Unfortunately for him despite the initial great results (initially a 30% reduction across his body) it has stopped working just like the chemo and the tumours are growing again. He has to stop taking it last week. He has mets in his lung, liver and brain, and just this week had a round of gamma knife radiotherapy to the head. It's been NON STOP for 3 years, and though we have had managed to have some wonderful wonderful memories in that time it is certainly exhausting for him and though I don't like to admit it, also for me. The TAS drug really gave him a new lease of life from about October - now, so I am extremely thankful for that opportunity. We were able to enjoy a lot trips around the UK together which we otherwise wouldn't have been able to do. I am sad that a trial was not an option for her, and also heartbroken that it's stopped working for my boyfriend but they are bringing out new things all of the time and I continue to hope other people will find them useful, even though they might no be the saving grace I thought they would be. Any extra time bought is good time in my opinion.
I usually work 4 days a week from home, but with covid-19 I'm furloughed for the time being. I have been his primary carer the whole diagnosis and we've lived together this whole time too, but with the virus it is more isolating than ever. I truly hope your mum continues to fight back - this is a horrible horrible disease and like you said, there is little information out there for us.
I want to share my experience too as any snippets of information might help someone else find a new treatment route.
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