Newly diagnosed with Cholangiocarcinoma

Hi  and a very warm welcome to the online community

I'm sorry to read that you have recently been diagnosed with bile duct cancer and know what a worrying time having a cancer diagnosis brings.

I can't help with treatment experiences, as I had a different type of cancer, but I have found this information from Macmillan for you. You could also type 'chemotherapy' and 'treatment' into the search bar in the group and it'll bring up previous posts with these words in. Have a read through those and respond to any of the more recent posts if you feel that the poster can help with any further questions.

Another resource that's available to you is the ask a nurse section of the online community. You can post any questions you like there and one of the specialist nurses will reply within 2 working days.

Macmillan have a lot of information on coping with cancer both online and in booklet form. You could perhaps start by looking at their information on diagnosis and treatment along with the section on getting help with your emotions.

Wishing you all the best with your upcoming treatment.

x

Hi KayJay1,

I’ve been living with Cholangiocarcinoma for just over three years now. Due to complications, I had a six month delay before I could have a Whipple procedure. After 6 months of Capecitabine it had spread to 6 other areas and my prognosis was very poor. However, I switched the chemo regime to Gem/Cis and this pushed the cancer right back and now I’m left with one tumour. I signed up for drug trials at University College Hospital, London. I’ve been stable now for two years even though the tumour is still there.

I have joined a couple of support groups on Facebook for Cholangio patients and their carers. People there share their issues and experiences and I’ve found that tremendously helpful.

I’ve kept myself busy by going for walks, keeping in touch with people and being very open about my illness. I try very hard to focus on the present day, not to dwell on the past or be fearful about the future. This takes a lot of stress off my mind. I am naturally a positive person so I look for things to be grateful for but most of all, I have an abundance of hope.

Hi Andy, it was really nice to hear from you, thank you!  It's good to know your cancer was operable, your lucky. I've been told mine is not, so after the procedure I had last month to insert a stent into the bile duct, I'm starting on chemo (Gem/Cis) next week. The secondaries are in both lungs - I've seen them on a CT scan - so I'm  afraid I don't have such a good prognosis as you. 

I do however share your positive attitude, believe there's no point dwelling on might-have-been. I'm too ill to go walking etc at the moment, or to do much of anything to be honest, but I'm hoping to be able to make the most of the summer once I've finished the chemo, be able to spend some quality time with my son and daughter-in-law in Scotland.

I'm joining a support group being set up by my local Maggie's Centre, for people with Upper GI cancers. I've been involved with Maggie's since my husband first got diagnosed with cancer himself (prostate, metastasised into his spine) and we have found them a great source of support.

Thanks again for making contact. I wish you all the very best.

xx

Hi Kay,

I was diagnosed with stage 4 Cholangiocarcinoma last year May. I started chemo with grated permission straight away because of covid. I was given 2 to 12 months but more like two they said because I had a liver transplant 1st April 2019 and was on immune  suspension. I started chemo cisplatin & gencitobine. My first 3 months scan showed the tumours had shrank and not spread or grown. My last cycle of chemo was stopped because of blood clots travelling from my left leg to my lungs which the cisplatin causes. I stopped eating meat, fish, I also gave up dairy and sugar and I eat lots of veggies piles and grains. My latest scan was 3 weeks ago and the tumours have not travelled to any other organs in my body. I have had a small amount of tiny metastasis and have started chemo same one Tuesday just gone. My history is ulcerative colitis from age 9 then I developed PSC a rare liver disease when I was 33. Aged 39 almost 40 I had a liver transplant which basically saved my life. The cancer was found in the old liver   And then secondary spread to my lungs. I know it’s very aggressive and was told after chemo it was likely it would spread all over. It hasn’t which I very pleased and I’m well enough to have more chemo which no one what’s but if I can prolong my life a bit longer then I will try what ever I can on my power to help.

I hope this makes sense, if you would like to ask me anything please do and keep positive the mind is very powerful. 

Hi Kay,

I’m sorry to see that you were not eligible for surgery and I hope the Gem/Cis treatment works well for you. I found it to be a lot more agreeable than Capecitabine, although I did need some infusions along the way.

Wishing you all the best!

Hopefully! I just had my first treatment with Gem/Cis, second is next week. Time will tell I guess!

Thanks for you kind thoughts and for being in touch.

K

Hi Mark, thanks for making contact, it's good to hear from you. I was only diagnosed in January 2021 and my first Oncology appointment 1st February, now already started chemo. It's been something of a roller coaster and I'm still I think in some shock.

I don't have your complex and difficult medical history so I can only imagine what that must have been like for you, to get a cancer diagnosis on top of all that. I've never had any serious illness in my life, no operations, had never even been in hospital overnight other than childbirth. I've just been lucky, I guess... and now my luck ran out, simple as that.

And this all happened to you at a somewhat younger age?  (I'm 67) Maybe with young family?

My own family "complication" is that my husband, older than me at 83, also has stage 4 cancer, prostate, which has spread into his spine. He's also currently on chemotherapy himself, his third round, and somewhat struggling. He has other health issues too, and I've basically been his carer for the past 5 years, which is difficult now.

My secondaries are in my lungs which is what I'm hoping the Gem/Cis will deal with. My oncologist have me a pretty grim prognosis, so reading about your experience is actually quite encouraging.

I'm also hoping my diet will stand me in good stead, as I've been first vegetarian, now vegan, for very many years, and eat mostly fruit, veg, tofu, pulses, wholegrains etc. Plus a few treats of course! But I also don't drink alcohol, or smoke.

I'd encourage you to stick with the healthy diet you describe, it can only help. Do make sure you're getting enough vitamins, I'd mention Omega 3, B12 and Iodine as things that some vegans miss out on. Plenty of good supplements around though.

It was lovely to hear from you, and I certainly wish you well with the next stage of your treatment. Hopefully we'll both be able to put those lung lesions into retreat.

With love and peace

K. 

i refuse all treatmeant

so happy you are getting there 

Hi Kayjay, so sorry to hear about your diagnosis. My father received his diagnosis in June 2019 when complaining of a sick tummy all the time. He was extremely fit at 70 years of age so he qualified for whipples. Whipples caused a lot of interruption in his gut even though he recovered well . He had precautionary chemo after surgery which finished in March 2020 . My advice is to trust your body and if something doesn’t feel right tell someone straight away. My Dad noticed his chest was a bit sore in his final chemo session and said it to the doctors but they didn’t pay attention and he ended up with pneumonia in both lungs and then caught Covid in hospital which meant he spent 3 months alone in hospital. He had his scan in June 2020 and still cancer free however his immune system was so weak the cancer came back September  and grew rapidly. He was told no further treatment 2 weeks ago and I am currently giving palliative care at the family home. He has days to live. 

I honestly believe if my Dad had been listened to he would have had more time. Although doctors do their best sometimes they can pass off your genuine concerns so best of luck with chemo but remember you know your body better than anyone and if something doesn’t seem right then it isn’t. Take care and I wish you all the best xx

Lils, I am so very sorry to hear about your dad. That is truly awful. I guess the only blessing, if there is one, is that he is receiving palliative care in his own home with family members there.

But nothing can make up for the loss of your dad, and the long periods he spent alone in hospital. My heart goes out to you and your family.

I reported some worrying symptoms to my Specialist Oncology Nurse a month ago. She just said it wasn't a symptom of the cancer. She didn't advise me to contact my GP who might well have identified it as an infection. In the meantime, I started chemo, so when my temperature started spiking last weekend, and I felt really ill I spoke to the 24/7 triage line who advised me to come to the hospital immediately. Turned out I had a serious and deep rooted chest infection and was put on intravenous antibiotics. Yesterday I was allowed to go home, with two more antibiotics and the instruction to monitor my temperature and go straight back in if the spiking happened again. So far so good, the antibiotics seem to be working, fingers crossed. But I'd had that infection for a month.

So you are absolutely right. We know our own bodies and what feels wrong. Your poor father should have been listened to.

Again, my sadness at his pain and distress, and your loss.