April 23, 2013 at 4:22 pm #70775jeeyoungMember
Thank you for updating us with this very positive news about your dad! Your dad is a true super hero and a top notch warrior in my book and gives us all hope! Best wishes and good health to you and your family!
JeeyoungApril 23, 2013 at 4:09 pm #70774
This has come as quite a shock…I didn’t know people ‘up north’ could use the internet? I can definitely imagine the shirt/underpants combo, dad’s dress sense has always been…experimental.
Anyway, Thanks for the kind write up, I don’t think my writing style has ever been described as eloquent! . Given the amount of negativity surrounding CC and cancer in general, it’s great to hear my dad’s story offers hope and inspiration to others. Long may it continue!
Just thought I’d provide a quick update following the scan results last Thursday.
Although I was unable to attend the meeting with the Leeds oncologist, I am told the outcome was more positive than previous appointments. The oncologist was helpful and explained the scans in greater detail than anyone had done in the past. Much to our relief my dad was told that between January 31st (the date of his previous scan) and 9th April there had been no significant growth to any of the tumours in the liver or lungs.
The largest of the two tumours in his liver had increased by about 1mm and is now about 30mm in size, a total growth of 4mm since September 2012 (which we are told is slow). The oncologist believes that for these tumours to cause any severe problems it would need to be approximately 5 times its current size, as they are not located in an area likely to cause blockage. Obviously we would hope to treat before growth of that extent.
Regarding the metastases on the lung, having initially being told one tumour it now appears to be three very small borderline tumours/growths which don’t look to have grown. However, one of the lesions could potentially restrict the airflow in to his airways if growth were to increase, so it was important to keep monitoring them.
When asked which metastases had the most cause for concern the oncologist explained that while the lesions on his lung could potentially restrict airflow, it is possible that further down the line these would be amenable to ablation, this was also the case with the smaller second tumour on his liver. However, the largest tumour on his liver would be more difficult to get to as it is located behind his diaphragm and may require surgery to remove.
In the first instance they would treat with chemotherapy, however the oncologists view is that since the tumours have maintained their pattern of slow growth it would be best to hold off on any chemotherapy for the time being and continue to monitor on a quarterly basis. His reasoning was that aside from the fact my dad is able bodied and not suffering any symptoms, It would be difficult to assess how well the chemo was working as cancer cells are generally more responsive when growing (dividing) more rapidly.
The question remains at the back of my mind ‘how far do we let it grow before dealing with it?’
When questioned if he thought the hemp oil or diet change could have contributed to the reduced growth over the last few months, the oncologist explained that typically my dad’s cancer has always been slow growing, but didn’t rule out the possibility. He also spoke of similar research involving cannabinoids which is underway in Leeds, so the idea behind the hemp oil was not completely absurd
So to recap…
Growth has remained slow/showed signs of slowing, currently the liver tumours are unlikely to cause any obstructions. Tumours/growths on lung could potentially cause problems with airflow but If they stabilise or grow very minimally it is possible that they could be removed using ablation, chemotherapy still remains an option and will be reviewed at the next quarterly scan. The oncologist is pretty confident that given the pattern of the cancer, the growth should remain slow (fingers crossed!)
So not out of the woods by any means and important to stick with the healthy diet (occasional dose of hemp oil), but at slightly happier/relieved ‘Martin the Lurker’ and a more positive outlook in general for the oncologist.
All the best
DanApril 17, 2013 at 5:12 pm #70773michael-sParticipant
As a long term friend of Martin (20+ years), I can confirm he is a super hero( and a lurker), especially on Saturday mornings when he carries me as his golf partner. I have also seen him tuck his shirt into his underpants . Seriously though, Martin is a fabulous guy, husband and father and an inspiration to everyone. He has a wonderfully supportive wife and 2 sons, who, I’m sure he would agree, have been a source of strength and helped and supported him through his many ups and downs over these past few dark years. As can be seen from his original post, his son Dan is a credit to his Dad and Mum and writes so eloquently about his father, which will, hopefully, give hope and inspiration to others on this forum.April 15, 2013 at 12:13 am #70771lainyParticipant
Dear Dan, looking forward to hearing Dad’s Scan report this week. Hey, DAD COME ON JOIN THE BEST FAMILY THERE IS! Dan, you are definitely not alone in this we are all family now. We love the Super Hero Survivors like your Dad as they bring so much hope to other members. Best of luck to you guys on the Scan report.April 15, 2013 at 12:13 am #70772marionsModerator
Ha, ha…Martin (the lurker) we can’t wait to hear from you also. Sending a big welcome your way.
Thanks Danny, for keeping us posted.
MarionApril 14, 2013 at 11:54 pm #70770pamelaParticipant
I would also like to welcome you to this site. Sorry it has taken me some time to respond to your post. My daughter had surgery on the 26th of March and I am just getting back in the swing of things. Martin sounds like such an amazing man and he gives us all hope. I’m hoping and praying his next scan will be a great one. I think sometimes doctors can be negative with regards to this cancer because most people don’t fair too well. Like everything, there has to be some at the far end of the curve that do well. I sure hope with new developments in cancer research that more people will start falling on that far end of survival. Bless you and Martin.
-PamApril 14, 2013 at 10:21 pm #70769
Lainy, Marion, Jeeyoung, Clare, Susie and Pat
just wanted to drop by and thank you all for your kind words, reading your responses has been very touching. Having never been in contact with anyone else who has had the misfortune of being affected by CC, it is comforting to know that we are not alone in the fight.
I wish you all the very best and will keep you posted on my father’s progress (Hopefully he will sign up soon, as I know he is a ‘lurker’ also!).
DanApril 12, 2013 at 12:03 am #70768herculesModerator
Your story was a wonderful execution of a story about a terrible illness. Wow is all I can say. Martin is my hero today. I have been looking for a success story and here you are. The cannibis article is very interesting. Just know that your story has made me happier than I have been for a while, as you have done all I thought was the key, and your fathers cancer was more advanced than mine and you have found a way to survive, Kudos to him. your story is a great one to hear for anyone touched by this disease. God bless you all as you seem very knowledgable about dealing with it. You made my day, Pat,7.5 year cc survivorApril 10, 2013 at 11:06 pm #70767wallsm1Participant
Thank you for sharing your story and best wishes to your father. Pleas keep us posted.
SusieApril 10, 2013 at 10:21 pm #70766claremParticipant
I too was a lurker before I posted! Thank you for sharing the last 5 years. I am in no doubt that it has been a very hard five years for all of you but I find your dads story very uplifting that he has come this far with CC. Whatever he’s doing, keep doing it!April 10, 2013 at 7:40 pm #70765jeeyoungMember
Your story is amazing and inspiring. You are all warriors in this fight! My mom also has CC stage IV and doing through weekly Chemo. This is truly a fight in every sense of the word. Thank you for sharing your Dad and your family story. I wish you all the best and continuting effort to fight this ugly disease.
JeeyoungApril 10, 2013 at 4:25 pm #70764marionsModerator
Dan….thanks for joining in. Kudos to your Dad and to your entire family for your persistency of searching for answers in the right places. I wish for continued success in the quest of enjoying life while living with cancer.
MarionApril 10, 2013 at 1:33 pm #70763
Thanks for the response Lainy, it truly has been a rollercoaster ride these last few years. We had a scare in January when he started to show signs of jaundice and we thought the tumour may have caused a blockage on his bile ducts. Blood tests and scans showed that it was just an infection and was dealt with through antibiotics.
The good thing is that at the moment my dad is showing no symptoms and as I said is leading an otherwise normal life. It’s very hard hearing the poor life expectency and prognosis from the doctors, especially when you look at him and he seems fine. It hard to believe that things could potentially change so rapidly…?
Unlike others it seems my dad has been very fortunate to bounce back from this disease the way he has and live with it for more than five years. I just hope the cancer growth continues to be minimal and that the chemo helps also. He does get quite emotional and feel down from time to time, but we try to rally round and change his perspective from ‘dying with cancer’ to ‘living with cancer’
I will keep you posted on the results – we expect to hear back early next week.
DanApril 10, 2013 at 1:14 pm #70762lainyParticipant
Dear Danny, welcome to our extraordinary family, you have arrived at the best place to be. Wow, your Dad has really run the gamut and he is truly a Super Hero with a great attitude. We have seen many Miracles on this Board so it is important to keep up your hope and good attitudes. I want to wish Martin a great report on his Scan today and hoping he can start his next round of Chemo. Please keep us posted as we truly care.April 10, 2013 at 12:31 pm #8218
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.org/2012/Leelawat_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!
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