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 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
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
