General chat
280 topics in this forum
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waiting for diagnosis 1 2 3 4
by littlesister- 91 replies
- 80.8k views
Hello Not new here, I sought support and advice over a year ago when my big brother had PC and sadly died a year ago in August. I have had IBS well, forever but had a really bad few weeks in June/July. Had barium enema which was inconclusive was offered "if I wanted" a CT scan which I did want. I had that a week ago on 02.12.2013 on Thursday I had a call from xx Hospital to tell me they saw something around the duct on my pancreas but don't know what it is and had sent the scan that day to xx in xx which they told me was a centre of excellence for all to do with pancreas. Woman I spoke to was unaware of the loss of my brother to this disease and loss of sister to bo…
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Radio interview
by Guest Fifi- 13 replies
- 12.3k views
Just wanted to let people know. I have recently had my Dad's story put on a website to help raise awareness. One lady from the website has contacted me today to say BBC radio Lincolnshire have read my Dad's story and would like to do an interview with me on air, next Tuesday 19th January. I have accepted, and I am petrified, but I am doing it for my Dad and everyone else going through this horrible time. The interview will be about GP's misdiagnosing and what a late diagnosis means. If just one person hears, and will push their GP, and get diagnosed early, then that is more time with their loved ones, and as we all know, that time is so very precious. L…
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Travel insurance
by EmmaD- 8 replies
- 12.3k views
Hello everyone, This is my first foray into a discussion forum and I'm desperate for some advice. I'm not even sure that I've posted this on the right area so apologies if not. My dad has terminal pancreatic cancer and is still fighting after a year of different chemotherapy regimes ( and a prognosis of 6 months life expectancy this time last year) My parents would love to go away on holiday but obviously it is a challenge to try and get any travel insurance for him. The only companies they have contacted (including insurancewith) won't touch him while he is still on oral chemo. Does anyone know of any insurance company that would cover cancer patients for travel …
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Miracle stories and diet cures
by Ofmenandangels- 4 replies
- 11.2k views
Hello, My brother is 45 and recently diagnosed with PC that has metastised to his liver. He has had no treatment yet but palliative chemo is on the cards. I have been trying to research online as much as possible with regard to diet and supplements and the effect these might have on outcomes and I wonder if anyone has any advice or suggestions or stories to tell. We have had no dietary advice at all so are looking into this ourselves. I would like to know if anyone has any info regarding fructose and glucose free diets or ketosis diets which it seems might help restrict tumour growth. I have read that the body metabolism changes due to the tumour and that high car…
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- 17 replies
- 21.4k views
the link to the forum? I asked on FB and they gave me the link but I already have it in favourites. I want to know where new people would find it coming to the website for the first time. Its very possible that its staring me in the face, I wouldn't be surprised lol. http://www.pancreaticcancer.org.uk/pcam
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For new members.
by Guest Fifi- 13 replies
- 13.6k views
Hi Recently I have seen a few new people join, and not post. That's fine. Sometimes I think it could seem more real if we post? I know we don't want reality. I also know, we need to feel we are not alone. When I joined, it took me a while to post. I just want to say, please don't be scared to. You are scared enough already. We are all going through, or have been through something similiar, if not the same. There will be someone here to offer some advice. I promise. I know this sounds about weird, but we are all so close here. I believe so anyway. Here, is the only place I have. If I didn't have here, I don't know where I would be. Sometimes, ju…
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- 3 replies
- 9.5k views
Its been a long time since I posted but its now been 10months since my husband Jim (aged 37) passed away. He battled PC for 14months and had a fairly typical journey. He was incredible throughout and I'm so very proud of how he handled the rubbish that was thrown his way. 10months on and life is okay. Thats the best I can describe it. The shock has worn off and I'm able to live my life to honour his. There are days I still break down but mostly I'm strong and can enjoy myself. I turned 29 recently and with the big three zero looking I've decided to dedicate the year to raising as much money as possible for PCUK. Ive set 30 challenges all which need to be complet…
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This looks very promising
by J_T- 0 replies
- 7.5k views
Pancreatic cancer treatment 'breakthrough' - Ulster University http://www.bbc.co.uk/news/uk-northern-ireland-34839453
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- 0 replies
- 7.8k views
Hi everyone, I know I need to update our thread but I don't really have any further news at the moment. Carl has been often told to write a book by the people who read his blog, so now he is. He is doing it for Stand up 4 cancer, but I don't want the fellow PCUKers to feel they have to donate as I know how financially debilitating dealing with cancer is. I just wanted to put a link to it as I know you'll be able to relate. I will put when each new chapter is uploaded. Hope you enjoy the read! Rob x http://carldenning.blogspot.co.uk/2015/10/a-brave-new-day-chapter-one.html
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- 2 replies
- 8.8k views
Just found this online, I hear that this is supposedly a potential future miracle drug that MAY cure pancreatic cancer within a week if it works in humans as well as it did in mice. Obviously these things take 10 years to test for side effects, but on the page it seems to allow people to trial ? As it says "open to recruitment" and was updated in September 2015. Anyone know anything about it ? The trial name is called CAM-PLEX Link : http://www.cambridgecancercentre.org.uk/patient-care/clinical-research/hepato-pancreato-biliary-cancer
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- 4 replies
- 10.2k views
Hi all, Early on in my diagnosis I did a little reading up on Nanoknife but must admit to being a little clueless. Can anyone tell me what is the clinical qualification criteria for getting it? I think I read somewhere that the tumour had to be kept within the Pancreas and not spread to the arteries ie not Locally Advanced as mine is. If anyone can point me towards the right information I would be very grateful. Marie X
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ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER 1 2
by knutsford4- 48 replies
- 41k views
Hi all, it's been quite a while since I've been on here, my Allen has got worse we are waiting on a His scan which is 1/7/2015 he has lost quite a lot of weight has severe back pain and I'm coming to terms with the chance that this hateful decease has spread inside him, he was able to get 11 cycles of Oxiplatin and Gempcisde (sorry about the spelling)
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- 4 replies
- 9.2k views
Hi everyone. As we all know abraxane has been taken off the nhs in England and there is a petition to get it back on. Well Carl has been interviewed and it will be shown at 7pm on channel 4 tonight. He's nervous he's made an idiot of himself but hopefully they got something useful lol Just thought I'd let you know so you could catch it if you're interested Rob X
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Reaching out 1 2
by Lisa Kelly- 37 replies
- 31.2k views
Hi all, My dad (72) was diagnosed with advanced pancreatic cancer in Sept 2014. He had a stent fitted as the tumour was blocking his bile duct. The cancer was inoperable due to its location, wrapped around the artery and vein... 4 months of chemo did nothing to the tumour so my dad opted to stop treatment. He was more concerned with quality as opposed to quantity. He has his families' full support. Just before Christmas he had a rocket drain fitted to allow the Acites to be drained off of his abdominal cavity. This has been being managed by mum, taking 2l every 3-4 days. Recently, the colour of the fluid has become darker and cloudier. He has also started to experien…
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Second Folfirinox on reduced dose
by Kaye 19- 1 reply
- 6.3k views
Well after 3 horrendous weeks of in and out of hospital after initial dose of Folfirinox ...the reduced dosage seems to be more tolerable..thank goodness....early days...but hopeful!
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Essex Pancreatic Cancer Support Network
by Robert_H- 6 replies
- 11.3k views
I'd like to make everyone aware that I have helped set up a new group in Essex for anyone affected by Pancreatic cancer in some way - either having been diagnosed with pancreatic cancer themselves or as a relative, friend, spouse or partner of someone with pancreatic cancer. We're meeting for a chat over coffee and a cake in Chelmsford this coming Saturday 25th April and we would welcome anyone who would like to come along. Please pass this on to anyone you know who might be interested and ask them to contact us through the Essex Pancreatic Cancer Support Network Facebook page or by emailing EssexPancreas@gmail.com for details. Many thanks. Robert
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- 7 replies
- 11.5k views
I aren't at all religious but the Thought for the Day section from the Today program touched on pancreatic cancer and I think the described transfiguration is what we should all perhaps aim for. http://www.bbc.co.uk/programmes/p02ys8b7
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Creon 40000
by Johnnathan- 3 replies
- 9k views
I have recently been informed by my pharmacist (and confirmed by my pharmacist son) that Creon 40000 (400mg) are not being made for the indefinite future. 25000 and 10000 are still available though. Your GP will need to change your repeat prescription if you are on the 40000 dose, which many people are. I think we all should contact Abbott Healthcare and lobby them to keep producing the 40000 strength capsules. It now means that I will be taking about 11-16 capsules a day instead of about 6-9.
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- 1 reply
- 7.8k views
http://www.sciencedaily.com/releases/2015/04/150430082151.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily%2Ftop_news%2Ftop_health+%28ScienceDaily%3A+Top+Health+News%29
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- 1 reply
- 7.4k views
http://www.bbc.co.uk/news/entertainment-arts-33151261?post_id=10153432989604066_10153432989599066#_=_ http://www.dailymail.co.uk/news/article-3126482/Sir-John-Hurt-says-diagnosed-early-stage-pancreatic-cancer.html
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- 10 replies
- 11.7k views
Hi, Just had the most awful time waiting to hear what happens next after my mum was diagnosed with pancreatic cancer. It seems like excellent news, they are going to remove the pancreas and it hasn't spread anywhere else - happy days. We have been told that she will have a normal life expectancy afterwards, as long as she is fit enough to have the op. It all sounds like excellent news but I have read online that there is still a small percentage live for a further 5 years, is this correct or am I trying to find a negative in the positive? I really hope I'm wrong.
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Lessons from the New World.
by MSH- 0 replies
- 7.1k views
Some right wing politicians have claimed that the money for healthcare has been protected in the recent austerity measures. It is true that the budget has been ring-fenced, but effectively has seen major cuts because of advances in medical technology and treatment and because of the ageing population. I read recently that the NHS needs in excess of £8 billion, http://www.thetimes.co.uk/tto/health/news/article4443469.ece Which predictably led to commentators suggesting root and branch reform generally in favour of a market based system. Some would claim that we are already moving in that direction. The problem is that our current system is one of the most efficient …
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- 6 replies
- 8.9k views
MODERATORS I THINK THIS NEEDS REPORTING AND OF COURSE REMOVING
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- 4 replies
- 8.5k views
http://www.standard.co.uk/news/celebritynews/errol-brown-hot-chocolate-singer-dies-aged-71-after-losing-his-battle-with-pancreatic-cancer-10229773.html
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Pancreaze
by theeeliteladyd- 2 replies
- 6.7k views
My mother just died recently from complications of pancreatic cancer. She has boxes and boxes of pancreaze - brand new, unopened, not expired. Does anyone know where I can donate these to?
