Newly diagnosed with Cholangiocarcinoma

After three cycles of Chemo (6 treatments with gemcitabine and cisplatin, a CT scan has shown up blood clots in my lungs so I'm now injecting Innohep (heparin) every day. I also have low haemoglobin so may well need a blood transfusion. But apart from that, my consultant is pleased with my progress and is already looking further ahead than the six months he originally said for what happens when I finish this course if chemo at the end of July. So, generally sounds like good news to me!

Hi Kayjay, absolutely fantastic! So welcoming to hear some good news after your efforts. You absolutely deserve it <3

Congratulations! Sounds like very good news to me!

Hi Kayjay1.

There  are alternatives to chemo. This depends on the size and location of the Timor and if it has spread. If not you should ask your oncologist about radiation treatment.  SABE/Cyberknife/Proton Beam Therapy. The first line treatment is CIS/GEM for Cholangiocarcenoma. If the size of the tumour is small say less than 5cm, then radiotherapy would be a good option. There is also targeted therapy, however this later down the line if chemo isn’t working and you can get onto a trial. They sequence  the DNA genes and work out if you have a mutant fusion cancer cell they have an inhibitor drug for. Approx 40% of cholangiocarcinoma they have trial drugs for. If you have any questions please ask.

Thanks for the info, Kev. But unfortunately my cancer was already well metastasised into my lungs before I was even diagnosed. I'm sure my consultant would tell me about any appropriate trials... but I'm speaking to him again in a couple  of weeks so I may well raise the topic again.  Nothing to lose, after all.

Meanwhile my cancer - as indicated by the CA19-9 count, and by CT scan of my lungs - seems to be reduced by the chemotherapy. So I'm well pleased.

Thanks again for your interest. I'm assuming you have this cancer yourself? Which treatments have you had? How is it going for you.

Best wishes

Kay

Still thinking about you KayJay ! You’re finishing chemo this month? Hope everything is going well and just sending my best wishes xx 

Hi Lils, thank you for thinking of me. I hope life is moving on for you and your family since you lost your father.

Things haven't been going so well recently, I've had a nasty blood infection which put me in hospital for over a week, and following another CT scan it seems the chemo hasn't done as good a job as hoped. So rather than finishing the chemo around now, they paused it briefly to allow me to recover from the infection, and I guess to clear that chemo out of my system... and now starting a completely different chemo at the beginning of August, for a further three months. (The new chemo is called FOLFOX.) Let's hope it's effective in buying me some more time. 

Because I've had the good news that my son and daughter-in-law are expecting a baby at Christmas, my first grandchild. Something to live for if I can, and a reason to keep positive.

Life goes on, after all, with or without me. 

Love and peace

K xx

Awh Kay im sorry you havent been well as of late. Its best to give the body a little rest and then onto the Folfox . How are you feeling mentally? You have been through alot and if you ever need to talk you know i am here.

 Your first Grandchild, i am so excited for you all :)  Thats such amazing news for you all. My Dad didnt think he would get to meet my Nephew Finn but he got to spend over a year with him. Positive thoughts . You're strong willed and you will hold your Grandchild xxx 

New news... I just heard from my consultant that I may well be suitable for a new treatment, Pemigatinib, that has only been approved by NICE in the last couple of weeks. Further cytology on my cancer is required but here's hoping.

Also I was interested to discover that Dame Zandra Rhodes was also diagnosed with Cholangiocarcinoma. Someone I've always admired. Good luck to her and me both. And to everyone with this cancer. This new treatment may well open a window of hope for at least some of us.

xx

Hi Kay, I don’t know how I missed this update. That’s sounds really promising . New treatment is always good news! Everything crossed for you. The little ones arrival will be here in no time so exciting times ahead