Topic: My dad - CC survivor of 5+ years and counting
First time poster, long time reader here.
I stumbled across this web site a few months ago during my DIY research in to CC. After reading lots of people's stories, I’ve decided it’s time to share my father's experience with this awful disease....
It has been a long and hard old slog, with many lows and highs, but most importantly after originally being diagnosed in September 2008 my father is still alive and kicking, living an otherwise normal life, working full time and playing golf at weekends.
Here is the story in full, sorry but it's an extraordinarily long post...
So as I mentioned, my father (Martin), 49yrs at the time, was diagnosed with Cholangiocarcinoma in September 2008 and was referred to St .James Hospital in Leeds for a liver resection under the care of Mr K.R Prasad.
At the time the tumor was deemed inoperable because of its size and proximity to the hepatic artery. However, thankfully after a round of chemo-embalization the tumor had shrunk just enough for Mr. Prasad to attempt a resection (trisectionectomy). We were told that "luckily" his tumor was encapsulated within the liver and hadn't spread, so the resection would be a possible cure, although the chances of a reoccurrence were still quite high.
During an 11 hour long surgery (February 2009) my father had about 80% of his liver removed, we were told the operation was a success and that the entire tumor had been removed. However, the battle was not over , the worst was still to come...
Three days after the operation my dad, who was very physically weak at this point suffered a heart attack late in the night. We later found out that he had got pneumonia and it was this that led to the heart attack. It was not looking good, he was highly unstable, the doctors told us it was touch and go and basically to prepare for the worst. It goes without saying that this was the worst night/few days of our lives. To make matters worse, on the same night my Grandad (my dad's dad) passed away in hospital following surgery on his heart (he had an aneurism and required a stent). Upon opening him up for surgery it turned out that his organs had completely shut down and that there was nothing they could do.
Given the fragile state of my dad we were advised by the doctors at Leeds not to tell my dad about his father’s passing until he was in a more stable condition. This was obviously very hard as my dad knew he was going in to surgery and kept asking about him. Having to lie to him was heart breaking but unfortunately necessary.
Miraculously my dad recovered from the heart attack and liver resection, slowly but surely we saw signs of improvement. Thankfully he was allowed out of hospital be at his father’s funeral. In hindsight he was probably not well enough to attend and the funeral and it took a lot out of him. The funeral should have been put back to a later date (but that's another story, involving a large family with lots of differing opinions).
My dad remained in St James (Leeds) for approximately 2-3weeks following the operation, he was still very fragile but had regained colour and was able to move around. However, his appetite was very poor and most of what he ate he brought back up (we later found out this was partly down to a broken jaw caused by our incompetent (ex) dentist) Upon his release he was still suffering from bile leakage and so the district nurse would attend the home every other day to help dress his wounds, attend to the leakage and replace his drainage bags.
Since the operation my dad has been having quarterly CT Scans at St. James in Leeds. He has recovered remarkably well and despite the cancer was probably fitter than he'd been in a long time. Having been slightly overweight at 14/15 stone before the cancer, he dropped to a worrying 8 1/2 stone around the time of chemoembolization and some time after surgery. He now maintains a healthier 12-13 stone. Albeit has developed a hernia around the abdomen.
Everything was looking peachy until the scan of December 2011 which showed that lesions had developed in his left lung (lower lobe). He underwent further surgery in March 2012 to remove his left lower lobe and Pathology results showed that the lesions were indeed Cholangiocarcinoma.
Since March my dad has been very well and active but again unfortunately the scan of September 2012 showed 2 lesions back in his liver and one in his lung, the largest being 26mm. Mr Prasad decided at this point to refer Martin to Oncology (Sheffield Weston Park) as he felt surgery was not an option given that the CC cells were seeding around the body.
The consultation with an Oncologist at Sheffield Weston Park in November 2012 was disappointing. We were told that chemotherapy is not very effective on this type of cancer and since Martin is fit and well, showing no symptoms and the cancer is very slow growing it would be pointless to have it at this time. So the plan remained to scan Martin every 3 months and monitor the growth. Our view was that surely you want to undertake chemo while you’re fit and well and not when the cancer has taken over and your immune system is down??
At this point I took it upon myself to seek out second and third opinions. I sought the advice of two specialists in London (Located on the AMMF charity website). Having requested the scans and a letter of referral from Dr Prasad (who had been excellent in the care of my father) I contacted Dr Shahid Khan (Imperial College London and St Mary's Hospital) and Prof David Cunningham (Royal Marsden Hospital) to see if they could review my father’s case.
Both Dr Khan and Prof Cunningham were very helpful and following review at their MDT meetings put forward suggestions to Leeds St James. The general consensus was that Martin should have chemotherapy to see how the cancer responds. They also noted that the metastases may be amenable to ablation, but it would be pointless to do this without prior chemotherapy to try and treat the cancer cells that have already seeded outside the liver as he would simply get recurrence again and the ablations would not be curative or life prolonging.
Dr Prasad agreed with their suggestion of chemotherapy (and not Sheffield's idea of waiting until the cancer became more aggressive), however, he was not keen on the ablation route as it could undo some of the major reconstructive works undertaken on his liver during the resection. He was keen also to point out that my father’s liver now functions very differently from that of any normal persons, and ablation could cause more harm than good.
So after a few months of’ back and forthing’ between Sheffield, Leeds and London a decision was finally been made by Leeds St James (Mr Prasad and the Leeds oncology team) to proceed with some rounds of chemotherapy. 18 weeks of chemo over a 3 week cycle (so 6 in total) of Gemcitabine plus Cisplatin.
The good news is that the Scan at the end of Jan 2013 showed very minimal /if any growth of the tumors since the September 2012 scans. He is due to have one more scan today ahead of the chemo, with a view to starting chemo on 23rd April. However, we have been told that depending on the results the chemo may be delayed. We were told that it is important to start at precisely the right time (i.e. not to start too early but to catch it before it advances too much) as the chemo can only be done once because the cancer builds up a tolerance to the drugs??
And finally, a few more points to note. Following the decision from Sheffield Weston Park in November 2012 where we were essentially told that nothing was going to be done, we decided to start doing whatever we could to try and delay/reduce any further growth. My dad started on the anti-cancer diets and picked up the following books:
We found the books quite useful and have helped him to maintain a healthy diet, cutting out all the sugary foods and processed rubbish in supermarkets and eating mainly a predominantly organic vegetable orientated diet. It has been quite difficult for him as my dad always did have a sweet tooth! He also bought a juicer and makes some lovely juices using all different types of vegetables and fruits. What I found astounding though is the fact the literally none of the doctors or medical profession (that we have come across) seem to believe that these changes to diets actually make a difference! We just keep getting told “everything in moderation”, seems a bit of a cop-out answer to me but, hey ho whatever happens I can’t believe that maintaining a healthy diet is a bad thing, for one it surely boosts your immune system and that has got to be key in fighting cancer and it’s symptoms.
A friend also advised us about trying hemp oil (basically an oil containing Cannabinoids from the Cannabis plant). At first I thought the idea to be completely ridiculous not to mention the illegalities of it, but, if you do your research there are plenty of personal experiences and studies out there (albeit mainly limited to animal and cell lining studies) which show some positive results in the treatment of cancer using extracts from the Cannabis plant. I found this one very interesting: http://petition.iowamedicalmarijuana.or … t_2010.pdf
Also, if you look up ‘Sativex’ you will find that GW Pharmaceuticals have developed a similar kind of spray that is used to treat patients with multiple sclerosis, so the proof is in the pudding that the true medicinal values marijuana are starting to surface.
Anyway, we did manage to source some hemp oil from a friend and as I mentioned earlier the scans between September and Jan there were no signs of tumor growth. Whether this can be put down to the hemp oil or the diet, I cannot say, but it is food for thought at least.
We also spoke to the doctors about the hemp oil and most of them laughed it off saying they had never heard of it. However, we were told that they didn’t think it could do any harm in taking it (at least while he was not on any other medication) and most recently the doctor in Leeds told us that actually they were currently undertaking clinical trials in Leeds involving Cannabis related medications.
As things stand currently my dad remains in good general health, he is showing no symptoms of the cancer at present and continues to live a relatively normal life. The outlook of the consultants and doctors remain mostly negative and keep reminding us of the poor life expectancy (it does wonders for confidence that...), but we are nearly 6 years on from the original diagnosis and unless the cancer suddenly becomes more aggressive (fingers crossed it doesn’t) I believe there is still plenty of hope!