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A forum for any other issues around pancreatic cancer.
314 topics in this forum
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There one minute, gone the next
by LindaH- 8 replies
- 10.1k views
It's all my own stupid, silly fault..... So, I wrote to a VIP at a VIP hospital in London. I won't use names or what treatment was open to me, but will give a run down on what happened. In my initial email to the VIP I asked about a trail he had pioneered and asked if it would be possible to be part of the trial and please could it be on the NHS. I didn't really receive an answer to this, but the VIP asked for my case notes, so my Oncol's secretary sent them to the hospital. Next he asked for my latest CT scan results and again my Oncol's secretary sent them for me - she's such a love. The VIP asked for the CT image scans on disc, so I bought them from my hospital, …
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What about 2nd line?
by KATB- 3 replies
- 7k views
Having looked into trials for dad following FOLFIRINOX it seems that they are all 1st line trials, none are 2nd line or beyond. Therefore once you've exhausted FOLFIRINOX and gemcitabine it looks like that's it Strange because in other cancers I know clinical trials can often be sought after standard treatments. I'm just feeling so frustrated that there so few options and that we seem to get to a point where they are going to say 'that's it, no more choices' so soon. Is there really no hope of a trial after standard options? In the states they seem to be going in trials. K x
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I had to laugh
by LindaH- 3 replies
- 7.2k views
Hi everyone, Just felt I had to share this with you, but I'm hoping it comes across and it wasn't a case of you having to be there. My daughter - when she is home from Uni - always comes with me to my chemo sessions and yesterday - Friday 19th was one of those days. As we were travelling back home in her car she said to me "Mum, do you realise all you cancer patients seem to be playing a game of Top Trumps with who has the worst cancer?" I really didn't know, I thought I was just having a conversation with the other patients, I absolutely piddled myself when my daughter (who is 21) described what was said. Example of conversations........ P = Patient P1.…
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- 1 reply
- 6.2k views
I thought some people might be interested in this article. If only we could trial it in the UK, it always seems that the USA are miles ahead of us. http://www.nypost.com/p/news/national/testing_starts_creates_homegrown_4jSHWpWFBEkczPTFque7VM
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Wilko Johnson
by MSH- 1 reply
- 6.7k views
There's a nice write-up in the Observer today about this man. He was diagnosed in January and opted to forego chemotherapy, yet still is able to climb on the stage and perform. Some good psychological insights as well. "You are walking along with a different consciousness," he said. "You look at other people and think they are all living under that terrible threat of mortality. For me though, it is sorted out, and that sets me apart." http://www.guardian.co.uk/music/2013/jul/14/wilko-johnson-last-shot#start-of-comments
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Thankful mum.
by Sones- 6 replies
- 9.4k views
When I was diagnosed with PC in 2011 I asked my consultant if I would still be alive to see my son graduate in 2013 and obviously he couldn't answer me and i truely beleived i wouldn't be. Well its July 2013 and my youngest has finally finished five years of hard slog and is now a fully qualified vet - I'm soooo proud and thankful to still be here.
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Hello & Thank You
by rustie22- 21 replies
- 24.5k views
My mum was diagnosed with PC 3 weeks ago & in that short time I have learnt so much about this horrible illness but also gained so much strength & inspiration from those that are using this site We have Mums MDT Meeting on Tuesday & all I know so far is that the tumour is in the tail, with a secondary metastases near the liver Mum remains completely oblivious to all of this. Denial, shock, I just don't know. But, believing that she can be completely cured by the Doctors How do I shatter her illusions, what do I ask the Team, I just don't know. Trouble is that because she is so positive, so is my Dad because he believes what she tells him . Can anyone she s…
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Charities coming under fire
by LindaH- 1 reply
- 6.5k views
On the BBC news this morning was an article regarding some Charities who are putting people under pressure to give more money by cold calling and actually advising people how much the charity feel should be contributed. Apparently, the public complaints have doubled over the last few months about some charities almost bullying people into giving more contributions. It's that fine line between smaller charities completely relying on public contributions and some of the larger charities who do tend to dominate the market (this is just my opinion). I have had first hand experience with regard to cold calling by a major charity and I will admit, the lady who called …
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More money thrown at IVF
by LindaH- 4 replies
- 8.4k views
On this morning's BBC breakfast news, there are now proposals for couples to be able to 'introduce' a third person to help them have a baby which could be disease free. Okay, I think I maybe simplifying things here and yes, whilst I agree to have a child is special (I had problems conceiving, fortunately a few hormones helped me; though it still took me seven years, so my daughter is my life and very special to us) and certainly to have a child who would potentially be 'disability' and possibly 'disease' free is truly a miracle. Yes, years down the line, the NHS would benefit from children who become adults without diseases or disabilities .....what a wonderful thou…
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Happy Birthday Steve Lewis
by J_T- 4 replies
- 7.3k views
I see its your birthday today! Hope you're having a good day! Julia x
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Feeling silly!
by jacqui- 4 replies
- 10.9k views
Hi everyone..just needed to ask if I should start panicking or am I really just being paranoid as my husband thinks I'm being! My mum was diagnosed last July with pc but I sought of knew what she had weeks before the docs sent her for relevant tests...I'd known a couple of other people with this awful disease. I seem to be developing the same symptoms...pain in my back and side that started a couple of months ago, came and went and is now back all the time Although nothing seems to aggravate or alleviate it. Tried anti inflammatries, co-codamol and even diazipan but to no avail. Had indigestion the other other for the first time in years ...no other symptoms..yet. Can t…
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Mis-diagnosis
by mallet- 7 replies
- 14.9k views
My father was diagnosed with IBS (irritable bowel syndrome) back in September 2011, by his GP after a 10 minute appointment. He was referred to a counsellor, as the GP thought the IBS must be stress related, and the GP failed to identify the "red flag" signs, such as a family history of cancer (his brother died from bowel cancer), so my father was kept in Primary Care. He was asked to keep a food diary and even the counsellor was convinced my father was depressed and IBS had been brought on because of it. We all know how quickly pancreatic cancer spreads, and vital months were lost by this mis-diagnosis. He had not got any better by November 2011, so my wife, a nurse,…
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Optical Biopsy using Cellvizio
by Gblyth- 0 replies
- 6.7k views
There is a emerging technology called Cellvizio that may help patients with pancreatic cysts get a definitive diagnosis after an Endoscopic Ultrasound-guided Fine Needle Aspiration (EUS-FNA) procedure. A video of the procedure can be seen at http://www.maunakeatech.com/healthcare-professionals/1210/eusfna-procedures
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APPG Meeting - 18 June
by J_T- 2 replies
- 6.8k views
I have emailed my MP, Tim Farron details of the meeting following a tweet to him. He has already written to the DoH on my behalf and I had a reply from Anna Soubry which I posted on this forum. He is a very good MP but I suppose him being there will depend on his diary. Hope he can make it. If there is anymore information I can send him, please let me know.
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BUPA 10K
by karen17- 7 replies
- 12k views
Hi everyone, My daughter is running the Bupa 10k in London on the 27th May with all donations going to PCUK. She is doing this to raise awareness of this dreadful disease and we plan to be there cheering her on. Come on Rebecca - we are so proud of you
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Money off Gas & Elec bills ! !
by LindaH- 3 replies
- 7.5k views
I was told about British Gas who will allow a £130 discount off your Gas & Elec bill if you are suffering either a serious illness or like us, terminal illness. Brilliant. My Gas & Elec bill was high which I knew it would be because of the terrible winter we have encountered and coming out of hospital last Christmas I really felt the cold, so the gas fire and central heating was on virtually none stop. I rang the lovely lady at British Gas ready to stake my claim.... Name?.... Linda Nature of your call?.... to enquire about your Warm Home Scheme and to claim my £130 please. Nature of your illness?.....Pancreatic Cancer. Do you work?...No, I've be…
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- 1 reply
- 6.9k views
I'm not sure if it is well known, which came to me from Macmillan, if you have a terminal disease of which Pancreatic Cancer is one, you maybe able to cash your life policy in to use before you die. The catch is - perhaps not the correct terminology; sorry -, you have to be presumed to die within the year, but of course with Pancreatic Cancer being such an illness that people can die within a year of diagnoses, perhaps it might be something you wish to think about. I have applied, I don't know if I'll be eligible, but I can but try. I would just like to be able to pay for my own funeral and make sure that my family have the money in the bank to help them when I've p…
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Live Chats
by Slewis7313- 6 replies
- 8.5k views
I joined yesterday's live chat along with my Daughter and Wife and found it really useful. The format is a little less formal than the discussion boards and as serious or light-hearted as you may wish it to be. The very capable ladies from PCUK were quick to answer any questions thrown at them and the hour went very quickly. The only issue is that we were the only participants! Can I urge my fellow forum contributors to give it a try as it is different from the discussion boards with the whole dialogue being erased after the event.... It is sometimes good not to be quoted in the future! If you are able, pease join future events as PCUK are really keen to make these se…
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Pancreatic Cancer UK London Marathon Team
by Support Team- 4 replies
- 39.3k views
Hi, We wanted to offer somewhere for our London Marathon Team to get in touch with each other, share training and fundraising tips and keep each other motivated. So please do use this thread to talk about your London Marathon activities. Thanks Pancreatic Cancer UK
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new members
by susikus- 11 replies
- 11.6k views
I can see from the members section that there are new members joining every week, and most don't post. I just wanted to let you know how incredibly helpful I have found it to share with others who are going through the same things as we are. To feel that you are not alone and there is understanding 'out there' is wonderful. Thank you Paul, Jools, Deb and Laura and everyone else. I check this forum first and last thing every day - and sometimes inbetween too. So if you're thinking about posting, please do be brave and make that leap, we will welcome you and help you all we can. Thinking of you all, with love, Sue xxx
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- 5 replies
- 9k views
New to this site, but all the posts Ive read have been very helpful and there are a lot of strong and wonderful people out there. My husband who just turned 40 last year was diagnosed with PC with spread to liver in March last year. He had 8 sessions of chemo, streptozocin, 5FU and dacarzabine and doxorubicin, tumours were shrinking when he had CT scan in August, just had another CT scan a few weeks ago and tumours are now bigger, his cancer is inoperable. They wont offer anything else, but is being offered to take part in a clinical trial, I find the consultants and drs difficult to communicate with. They keep saying that they have people who have been on clini…
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- 4 replies
- 10.2k views
A stent was inserted into my pancreas whilst I was hospital and whilst it alleviated the jaundice and helped a little with digestion I started at Christmas with the runs, so the doctor gave me Creon Capsules which certainly stopped the runs, but OMG the wind is awful..... I take 3 caps a day at 300mg with meals, plus I've been given a 150mg cap to take if I have a snack, which I don't really take because I rarely snack. I find I'm having to take a couple of Wind Ease tablets before bed as the tummy pain is terrible. I won't care if I could just pop to one side a get rid of the wind, but it won't go away. Has anyone had experience of the same thing and would …
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Memory loss/confusion
by Stoke- 1 reply
- 6.9k views
My husband was diagnosed with non-operable PC last summer and has been having cycles of gemcitabine. Over New Year he suffered the first period of 'confusion' and 'lost' 2 days. And again this week he had another episode but this time it passed after a few hours and he seemed back to normal the next morning. Has anyone else had similar experiences or know what may cause these? I found these quite scary.
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Diagnosed with RA
by mikejamesjhm- 2 replies
- 7.8k views
Recently my friend has been diagnosed with Rheumatoid Arthritis and Fibromyalgia What all medications do you take and how do get out of such condition?
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My mum has pancreatic cancer
by Helaine- 1 reply
- 6.5k views
Back in 2011, Dec 23rd to be exact, we were told that mum had pancreatic cancer, devastating as you will all know,my mum was the fittest person i knew, walked miles every day, never smoked, hardly drank and ate very healthy so why on earth did she get this horrible disease....Now I thought that as the tumour was in the head of the pancreas she would be able to have the Whipples procedure so I set about researching it, by the time I finished I knew so much I could have performed the operation myself, sadly in the Feb mum was told she would not be able to have the op as the tumour was 4cm (over the cut off size) and had grown around a major vessel leading to her liver, she …