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A forum for any other issues around pancreatic cancer.
313 topics in this forum
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If awards were given out here...
by WifeampMum- 10 replies
- 14.3k views
...I would nominate 4 brave, kind and wise ladies who are travelling different but immensely difficult paths with courage, dignity and honesty, and along the way inspiring and assisting their forum family tremendously. They are Marmalade, PW, Dandygal and Ruthus. Ladies - you are amazing! Wishing you strength and love as you continue your journeys.
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Woman and Home article
by boa- 2 replies
- 10.5k views
Has anyone else seen the very moving article on Emily who died from pancreatic cancer at the age of 29 six years ago. It is written by her father and talks about how he and his wife have coped subsequently. Catherine
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- 2 replies
- 10.7k views
i know some people have had difficulty opening this link, if you do Google Ted Talk Laura Indolfi and you should be able to watch. It is well worth it.
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Breathlessness
by Jim- 14 replies
- 19k views
My mum spent a month in hospital & was receiving regular anti clot injections and I was wondering now that she is home not having this could be the cause of her being breathless? I.e clots in the lungs perhaps? 10 steps or less and she is completely out of breath until she lies or sits down again...turns into a panic situation too but things normally go back to normal within 10 mins. If it is what I think, I don't know why the hospital wouldn't recognise the probability of this problem prior to discharge. Would oxygen help and can this be supplied by the GP or district nurse etc?
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- 5 replies
- 13.5k views
In 2014 my mum had a distal pancreatectomy removing part of pancreas and spleen. Recovered well up until recently and was admitted to hospital last week, turns out her pylorus was blocked so stomach couldn't empty. Going to have a stent fitted so she can eat normally. She already has come along way in the past week nutritionally. It does appear though that the cancer has returned to pancreas with mets spread to liver and some in lung. Her last scan was in December with nothing!! Not yet at the oncology stage but the take from the GI consultant is that the prognosis is poor with chemotherapy possibly being the only option. Is there nothing that can be done surgically…
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Walking the Courses
by Didge- 2 replies
- 10.9k views
As many of you will have seen on the website, Richard Farquhar has taken on a huge challenge in his Walking the Courses fundraising, walking around the country's racecourses over a year. I took part in the latest walk over the weekend so although I can't identify myself on this forum, please donate to this brilliant cause if you can! www.walkingthecourses.com Didge x
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Positive thinking
by WifeampMum- 11 replies
- 15.7k views
A recent post on another thread has set me thinking, not for the first time, about living with cancer and positive thinking. When my husband was first diagnosed I would get quietly annoyed when people told us how important it was to remain positive. Because by implication it means that if the disease gets the better of you, it might be because you haven't done enough positive thinking and so to some extent, you're to blame. And I'm not aware of any scientific evidence that proves positive thinking improves cancer outcomes. If there was, I'd encourage my husband to enrol in a positivity course tomorrow! Of course I'm not suggesting that positive thinking is a bad…
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waiting for diagnosis 1 2 3 4
by littlesister- 91 replies
- 92.5k 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
- 15k 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
- 14.5k 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
- 13.7k 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
- 24.3k 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
- 16.5k 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
- 11.2k 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
- 9k views
Pancreatic cancer treatment 'breakthrough' - Ulster University http://www.bbc.co.uk/news/uk-northern-ireland-34839453
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- 0 replies
- 9.1k 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
- 10.4k 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
- 12.2k 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
- 46.6k 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
- 10.9k 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
- 37.8k 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
- 8.3k 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
- 13k 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
- 13.4k 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
- 12.2k 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.