February 25, 2020 at 7:54 am #15437
In 2003 I was diagnosed with two autoimmune chronic diseases, Ulcerative Colitis and Primary Schlerosing Cholangitis. Roll on to 2016 and my liver finally waved the white flag and said enoughs enough. A liver transplant was the only option to save my life. After an onslaught of prodding, poking and more tests than you can wave a stick at I was out on the waiting list. Christmas Eve 2017 at 0403hrs I got the call, a liver had become available, just three hours later I was on the table being sedated. 24 hours later I’m eating my Christmas dinner in ICU, a week later I’m back at home watching the fireworks over the Thames on TV with my wife. Life was good, from a year of deteriorating, life threatening health I was back up on my feet.
Three weeks later in clinic I sat down with my consultant.
“I’m afraid I have some bad news.”
It turns out my old failing liver was hiding a secret. Cholangiocarcinoma. A secret, however, it felt the need to share and had spread it outside to nearby lymph nodes.
Our world fell apart. I can remember going to the weekly clinics, laughing and joking with the nurses, so happy that my life, our lives were back on track. Then all that was taken away again.
Palliative care was the watch word of the day.
“There’s nothing we can do.”
At the time treatment wasn’t even being considered. But thankfully the oncologist who initially had the same train of thought spoke with a fellow consultant in London who suggested a course of Chemotherapy. And so it was agreed. Eight cycles of two weeks on one week off. My chemo was pill based so I could at least take it at home and if truth be told I think I got away easy. I had some side effects but compared to many I had it good. The worst of mine was a condition that affected my hands and feet, damaging the skin, so much so that two years on my skin was so damaged I still don’t (and unlikely to ever again) have any fingerprints. But the good news is that I am in remission. No sign of cancer. I go for my six monthly CT scans and hold my breath every time, I think there will always be that ominous cloud hanging over head, but right now it’s staying away.
I’ve since ticked off a three week road trip across California from my bucket list and am working on more. I take each day, each week as it comes. The last few years has taken its toll on me both physically and mentally, but I’m still here and living my life as best I can.
February 25, 2020 at 1:36 pm #15439
- This topic was modified 1 year ago by identity.
Thank you so much for sharing your story with us – you have certainly been through a rollercoaster of an experience.
Cholangiocarcinoma is notoriously difficult to diagnose, and even more so when PSC is present. As PSC is one of the known risk factors for cholangiocarcinoma, presumably you would have been checked for this before you were put forward for transplant. However, tough though it was to have CCA found afterwards, if it had been discovered before, because currently liver transplantation isn’t allowed when cholangiocarcinoma is present, you would not have received your new liver ….
It’s good to know that the chemotherapy you received proved effective and you have been NED for some years now – long may that continue.
And well done on that California road trip – lack of fingerprints must have been fun at passport control when you entered the US! – and on your positive attitude to life.
With kindest regards
Please note: AMMF is not a medical institution and none of us is medically trained. Therefore, it is not appropriate for AMMF to give medical advice or recommendations, and all details we give are provided for information purposes only.August 23, 2020 at 12:38 pm #15861
<p style=”text-align: center;”>Hi Mark</p>
My mother was diagnosed back in March with possible spread to lungs as 2 very small nodules appeared. Currently on chemotherapy and so far treatment has stabilised the cancer and the primary has not grown or spread further.
I have never heard of chemotherapy actually curing this cancer so your story is truly amazing. May I ask what course of chemotherapy you had?
Apart from having infections mum is really healthy and it baffles me that inside she is so poorly. I need to be ready for when treatment finishes to know what should be the next step. Having been given so many different pieces of information I really struggle to trust what I’m being told is the best way forward as many do not know enough about this dreadful cancer. Any advice would be greatly appreciated.
Thank you in advance.
Mum diagnosed with Hilar cholangiocarcinoma March 2020August 23, 2020 at 1:13 pm #15862
I’m very sorry to hear about your mother and what she and yourself are going through.
although I am in remission of the cancer there is no guarantee that it is “cured” unfortunately that hangs over me and it could return. My situation is also possibly somewhat different in that the cancer wasn’t discovered until after my liver transplant, in effect removing the primary cancer and just leaving any cancerous cells that had spread outside. I am sure that the medical teams looking after your mum will be doing their very best for her. We are all different and require different treatments. For what it’s worth the chemotherapy I was on was a drug called capacitabine. As I mentioned this is a pill based drug not IV as most other forms of chemo are. Please bare in mind that there are a vast amount of different chemotherapy drugs and then even further combinations of those drugs.
I hope that your mother responds well and continues to make positive progress. Wishing you and her all the very best.
MarkAugust 23, 2020 at 4:06 pm #15863
Thank you for your reply Mark I understand the difference now thank you.
All the best to you
Mum diagnosed with Hilar cholangiocarcinoma March 2020September 6, 2020 at 7:52 am #15894
I have just been diagnosed with CC T4N1 and they have told me chemo only option.( age 54 and fit)
Your story however has given me some hope and encouragement that you can still have a life. You have been through so much and yet there you are still fighting on and “living” your life to the full. I admire your courage and have found inspiration from your story.September 6, 2020 at 4:40 pm #15896
I’m very sorry to hear of your recent diagnosis, hearing the word cancer stops you in your tracks.
I’m glad you found something in my story, I’m a bit of a stubborn old git and don’t let things stop me from what I want to do. A diagnosis of cancer doesn’t mean everything else has to stop, if anything it’s that kick up the arse to start doing the things you’d been putting off. Collect memories with the ones you love.
xFebruary 7, 2021 at 7:53 am #16258
<p style=”text-align: left;”>I’m back and, unfortunately, so is my cancer. A few months ago I just started feeling not quite myself, couldn’t really nail it down. I noticed I was becoming a bit more fatigued than normal, then I noticed I passed a couple of pale stools and then the final straw I started getting an itch that was very reminiscent of when I was first diagnosed with PSC.</p>
Of to the docs I went, 10 days in my local hospital being scanned and daily blood tests. I was then discharged with my Transplant hospital due to contact me. And there it was. “I’m afraid your cholangio has returned.” Surgery isn’t an option, that word “palliative” again. So off to my oncologist I went. Chemotherapy is agreed and I’m due to start in a few days.
It’s hard to know what the future will bring but what I do know is that I didn’t roll over the first time and I’m not about to now either. It’s hard to draw similarities to anyone else, as my consultants keep telling me I’m pretty unique and unusual. I’m relatively young at 46, have had a liver transplant and am a stubborn old git. I’ve deliberately kept myself fit in the last two+ years since my last chemo treatment finished for specifically this scenario. So I’m hoping I’ve forged a decent foundation to wage this battle on. My chemo this time around will be the more traditional Gem/Cis as opposed to the pills I had last time. I’m not fighting the chemo as such, the chemo is just the burden of a heavy axe I need to weald against the cancer.
Onwards once more. . .February 7, 2021 at 11:46 am #16259
Hi Mark, So sorry to hear it’s come back. You’ve been through so much.!!It seems so very unfair . Has it spread to outside your liver?
I’m reading loads of books at the moment about people just like you who have proved the doctors wrong and ” healed” .It’s more than just sheer will power . It is proven to boost immune system and have a positive effect at a cellular level. You are one of those people!!
Have they suggested immunotherapy or targeted therapy drugs? It seems the way all cancer treatments will go eventually.
The thing is no one can tell you when your time is up. Plus many people now, although not “cured”, are living with cancer for many many years.
Have you joined the FB page for uk and europe? It’s got lots of people on there supporting each other.(3) Cholangiocarcinoma Support (UK & Europe) | Facebook
Sending you strong positive energy.
February 8, 2021 at 6:14 am #16266
- This reply was modified 4 weeks ago by jilly.
im guessing it would be considered metastic already as the “original” primary cancer was removed with my transplant but had spread outside already and now has spread back to my new liver. Gets very confusing.
fairly sure immunotherapy isn’t an option for me due to the transplant as I have to keep my immune system suppressed to keep my body from rejecting.
I don’t know about the power of positive thinking and the like, all I know is that I’m not about to just put my hands up and quit. You do whatever works for you, whatever it takes to get you through. Some people choose miracle foods, others put their faith entirely on science others just decide to let nature take its course. It’s your life, it’s your decision and nobody can take that from you. I hope you have found your way and life is as good as it can be for you.
Onwards and upwards, stay strong.February 8, 2021 at 5:06 pm #16270
I’m unsure re targeted or immunotherapy drugs if had transplant but they are suppose to help your immune system fight back, not weaken it. All I’ve read is basically pinpointing to the same thing. Its all about boosting your immune system to recognise cancer cells and then fight it. Cancer cells are clever and can put a hidden veil over themselves so your immune system can not even see them. These newer drugs ” unveil” the cover and then your own immune cells can see them:) If you think what our minds can already do to our physical body. Eg divers can make their pulses drop to a ridiculously low level,people can change their body temperature just by thinking about etc etc. What is to say our minds could trigger our immune system to work better just by thinking it?? I believe it can , we just don’t know how yet. I’m stage 4 inoperable at the moment anyway ,so hopefully everything I’m doing will change that!You are a real fighter Mark and certainly given me lots of inspiration.February 8, 2021 at 5:34 pm #16271
That’s the problem Jilly, I have to maintain a suppressed (weakened) immune system for my transplanted liver, if I don’t my immune system will detect the liver as a foreign body and attack it. So the last thing I want to be doing is enhance my immune system. Catch 22 I’m afraid.
don’t get me wrong I think the human body is incredible and capable of so much more than we often think possible. Keep with the positive attitude, let’s face it, it’s not going to do any harm and I’d rather live a positive life than a negative. I’m glad you’ve found some inspiration in my story, not sure how, but if it helps than more power.
ive just joined the FB page too so may see you on there.
take care, keep strong, stay positive. X
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