Chemo for Cholangiocarcinoma

Hi Harper B. Welcome to the Online Community, I'm sorry to read about your Mum's diagnosis. It's always a struggle when anyone receives a cancer diagnosis which causes stress, anxiety and a mixture of emotions. It's good however to read that the stent fitted has made her feel a little better.

I have a different type of cancer but I agree knowledge is power. Whilst waiting for the members here to come back it might be helpful to look through this reading material Bile Duct cancer just click on the link I've created. Then you might want to note down some questions you want to ask for when Christie's call.

Sending you and your mum all the best, B xx

Hi. Sorry about your mum’s diagnosis. I have the same cancer, though I haven’t had a stent fitted…not necessary for me. I started with chemo last Thursday. I was only diagnosed in August. I’m on a combination of two chemo drugs, cisplatin and gemcitabine. Until chemo started, I did struggle with the not knowing, and the fear of not wanting to ‘be a pest’ and ask too many questions. Also, I did find when I was in a position to ask, I didn’t know what to ask! Write down any questions, no matter how small or irrelevant they might seem.

since I started the treatment, I feel a lot calmer about it all as I am now on a path. It also helped talking to the lovely oncology nurses at the unit (mine’s in Alnwick) and also other patients. Helped me to put things in perspective. I made sure I had written down phone numbers of people to ask questions that arose following treatment.

Good luck and positive thoughts to you and your mum. Xx

Hi Carrie

Thanks so much for your reply and so sorry to hear about your diagnosis. I’m sending lots of positive thoughts out for you. 

I think you’re right, once she starts chemo and is on a path, we will feel better and more aware of what’s going on!

Lots of love to you Xxx

Hi Harper B,

I’m sorry to read about your mother. I know how frightening this diagnosis can be, especially if one turns to Google for information, as I initially did. I can understand why your mother might not want to know more then she has to, but I can also understand why you’d want to know more, in order to get the best care possible for her.

I’ve come across stories of hope on various support groups here and in the States, sadly in amongst many tragic losses. There are people out there who’ve had operations following chemo, after being told their cancer was inoperable. There are others finding hope through the discovery that they have certain gene mutations that lead them to more targeted treatment. Specialists in the UK (my London based hepatologist included) are working towards being able to offer liver transplants to people with bile duct cancer. A transplant is currently only an option for bile duct cancer patients in the States through the ‘Mayo Protocol’. A good place to start to seek answers might be the AMMf bile duct cancer charity. They also run a Facebook group that's reasonably active.

ammf.org.uk/.../

I was diagnosed with Intrahepatic Cholangiocarcinoma in 2015 and was extremely fortunate that my team were able to remove the tumour with a liver resection. Six months of ‘adjuvant chemotherapy’ pills followed, to mop up any stray cells, and I had three and a half good and healthy years before the cancer unfortunately returned in May this year.

I was fortunate they were able to operate again (open surgery this time around, recovery’s been hard) and all looked good, but I’m currently not 100% sure if I’m cancer free or not. I’ve had to move my care from London to the Christie for the chemo stage this time around as I have more family support up north.

I’ll be starting chemo in about 2 weeks time under the care of Professor Valle. He’s a top international specialist in bile duct cancer, and a very nice man. Your mother will be in expert hands under the team at the Christie. I’ve visited a couple of times now and everyone’s been very calm and kind.

You’re welcome to private message me if I can help any further.

Warmest wishes,

Charlotte

Dear Whirlygirl,

Sorry to hear your cancer has come back, but it’s very positive to hear what you’ve been able to do thus far and that there could be possibilities of surgery and other avenues. I wish you the very best in your next chemo stage.

carrie.

Thank you Carrie. Much appreciated. As you can imagine, it's been disheartening to go through this all over again, especially when I was feeling so well. I know one just has to stay positive and keep hope. I might be put on Gem/Cis too, this time around, if a blood test reveals I'm low in the DPD enzyme. I was put on Capecitabine pills last time around for the Chemo part of my treatment, but they've since discovered these chemo pills can be dangerous if one's low in DPD. I'll know more soon. I hope you're managing ok on the Gem/Cis? My new Oncologist suggested that it's easier then Capecitabine and doesn't make you feel so sick, just very tired. I hope that's the case and you're doing ok. All best x

No problem. It’s a long day on the Gem/Cis. A couple of hours to flush saline through the kidneys, a couple of hours for the GenCis then another couple of hours with saline, magnesium and potassium. I was also given mega anti sickness pills to take which work really well and haven’t had any noticeable nausea. Just the tiredness/lethargy shocked me a bit. Please feel free to message any time. 
Carrie xx

Hi Charlotte. Thanks so much for your message - it’s so appreciated to hear about your firsthand experience! 

sorry to hear about your diagnosis and that the cancer came back. I hope you get the news you hope for soon. Sending out positive thoughts for you. 

I really do appreciate all of the information you’ve provided. Like you said, searching on the internet is an dangerous game and can be quite depressing for the most part but there’s comfort in websites such as Macmillan who offer real support and real life stories! 

sending lots of love Xxx

It sounds like you’re looking in the right kind of places for information. I’m sure the oncologists and specialist nurses at the Christie will be very helpful too. I was given all sorts of useful leaflets on my last visit and lots of helpline numbers to ring!

I didn’t have to wait too many weeks to be seen, so I hope it’s the same for your mother. It’s not easy being left in limbo between hospitals, but it will get easier once you have an appointment in place for her.

Wishing you both all the best on this challenging journey, take good care  x