General chat
278 topics in this forum
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- 1 reply
- 4.4k views
I thought you'd changed the page to just show the list of forums - then I saw the link to view Active Topics! That page will be saved to favourites. Thanks, much better!
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Advice please
by janem- 3 replies
- 5.5k views
My dad has just been told he has pancreatic cancer and has an appointment in 2 weeks at the specialist centre for an EUS and has been told that they might do a biopsy as well. I guess this will tell us how advanced the cancer is and if it is operable. Can anyone tell me how long on average it takes to get the results or if we will be told at the time.
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Waiting for Marathon news
by Thriae- 13 replies
- 9.4k views
Hi all I'm beside myself today waiting to hear whether I have been successful in gaining a place in the Virgin London Marathon 2014 running for Pancreatic Cancer UK. The post probably will not come until after I've left for work, so just wanted to share my extreme excitement and anticipation. I know it's very difficult to gain a place but it means so much to me I will be ecstatic if I get it. My partner and I were both unsuccessful in the ballot, and he doesn't know I've applied for a charity place so I can't even tell him why I'm watching the letterbox like a nut case. If I'm back later with the news I'm wishing for then I will be delighted to share with you…
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Sent APPG Recording to my MP
by J_T- 2 replies
- 5k views
I sent my MP, Tim Farron, this recording with a note to listen specifically from 24.50 mins with particular attention to the comments at about 25.38 re European directives which quite shocked me. This is the response I got: Dear Julia Thank you very much for your recent email with regard to the low level of funding for research into pancreatic cancer. I offer my deepest sympathy because I have endured similar grief, when my wife’s mum was taken by the same affliction at a similar age. I have contacted our expert MEP on this subject and received the following explanation: - “Before going into any of the specific details of the proposed Clinical Trials …
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I was on BBC Radio Lancashire Thursday
by LindaH- 6 replies
- 7.2k views
I did a telephone interview at 8:15am *yawn* Thursday morning. By all accounts it came across quite well and I feel I got my point across, but there was so much more I could - and wanted - say. I'll post the link if anyone would like to listen. Just click on Listen Now. When the little screen comes up move your curser along the time line to 2 hours and approx. 21 minutes and then my piece will be on a couple of minutes later along with the lady from PCUK. http://www.bbc.co.uk/programmes/p01j32d4 Linda x
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How to email a member
by EmmaR- 1 reply
- 4.3k views
Hello how do I get to email a member please EmmaR
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Anyone taken these?
by EmmaR- 5 replies
- 5.7k views
Macmillan nurse recommended to my hubby,s Dr that he take these capsules they are called Gabapentin collected them from chemist now hubby don't want take them says already taking to many drugs ! nurse said they would help with the pain he is getting on left side of back and that the pancreas could be pressing on some nerves any advice please . Hope this is the right board for this question . EmmaR .
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Anyone heard how Steve is doing?
by LindaH- 1 reply
- 5.2k views
I've seen a couple of pictures of him ....I think pre op....on Facebook and he looked so dapper in his surgery gown, hat and white stockings. I hope he's okay, as I'm sure he will be. Linda x
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Ways to help
by Thriae- 1 reply
- 4.4k views
I just wanted to take an expressed thought from dad (recently diagnosed with stage IV PC) and ask if anyone has any ideas on it. Dad was recently discharged from hospital where his fellow ward mates were at various stages of different cancer. I know that dad was very moved by their plight, and since his diagnosis has expressed a desire to 'offer something back'. I have NO idea how he might fulfil this wish - especially as he himself is very poorly - but wondered if any of you have any ideas? I even wondered if dad could maybe contribute to the 'case study' section of the website or something like that. I'd welcome any suggestions that I could maybe pass on to h…
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One expensive mistake
by LindaH- 5 replies
- 6.4k views
I think I wrote about a holiday Steve (hubby) and I hoped to take for my 60th birthday which was supposed to be in New York, then out of the blue I was informed I had DVT, so had to cancel the trip of a lifetime. Fortunately, all but £7 we have received every penny back from the cancelled trip so ....phew ! I was determined we would go somewhere after all 60 years is somewhat a milestone birthday, but why oh why didn't I listen to Steve? We decided to go to Euro Disney on the Euro Star train....fantastic journey, just 2 and a half hours from London straight into the resort....why can't Britain have a railway system like that? Anyway, I digress. We've been to Euro D…
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Dads Clinical Trail
by Ezobor- 0 replies
- 4.5k views
My dad is currently part taking in a clinical trail for stage 4 advanced pancreas cancer with liver metastases. The drug that he's testing is called MM-398 with 5-Fluorouracil & Leucovorin. He's currently had two sessions and been so ill after both. His sessions are chemo for the 1st week of the month then follow up appointments every week and chemo every 3 weeks. The first week after his chemo he seems to be fine a little tired but copes ok. The the second week after his chemo he gets so ill, can't even keep fluids down or lift his head of the pillow, he has been admitted into hospital after both sessions as he get so dehydrated. It's been agonising as they dont un…
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60-years-old on Sunday.....
by LindaH- 9 replies
- 7.4k views
I never thought I'd make it. Sat in my hospital bed December 4th 2012 having been told the news, 6cm inoperable tumour in your pancreas and literally......I kid you not, given until Christmas without treatment as the doctor on the ward said...quote: "You can have Chemo, if you think it's worth it!" Then walking away and leaving me with that thought, so here I am three months away from the next Christmas and facing a mega birthday.....I couldn't be happier to be 60 and if I reach 61, 62, 63 ....on and on, we'll see. Going away tomorrow for a week in France, Euro Disney. We were going to New York, but then it was announced that I had DVT, so we are Euro Star...ing to…
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Planning Chemo in Prep for Surgery 1 2 3
by InfoForMum- 74 replies
- 47.8k views
ABOUT THIS THREAD - This thread starts the day before initial diagnosis (see this entry). Am changing the subject as things move on, so skip to the bottom if you want to see the post relevant to the current subject. If you want the full story it's here, but brace yourself because I'm not good at keeping things short! Hi all, My Mum is going for her post cat scan consult tomorrow. Quoting consultant "We won't be surprised to find it's something serious". She was also told symptoms were textbook for cancer, but still holding out hope that the initial ultrasound missed a low down gallstone and the "anomaly" seen in her Pancreas is nothing. Preparing, without think…
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- 1 reply
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Signed up last night for the Bupa Manchester 10K - done this before and it's a great event. This time running with my brother for PCUK on 18th May. My boys will run in the junior event the day before. Also signed up with my husband and 3 boys to do the Great Cycle in Manchester on June 29th - just doing the 13 miles but should be a good day with the kids and hopefully raising more money!
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ViP trial for inoperable pancreatic cancer
by Support Team- 1 reply
- 6.2k views
Hi, You may be interested to read details of the ViP trial that is currently running in the UK for inoperable pancreatic cancer. The trial is running in the followin places - Belfast, Bristol, Bournemouth, Guildford, Liverpool, London (Royal Marsden, Barts and The London and Guy’s and St Thomas), Manchester, Middlesbrough, Newcastle, Nottingham and Sheffield. For more information see our website http://www.pancreaticcancer.org.uk/information-and-support/clinical-trials/trials-for-inoperable-pancreatic-cancer/vip Best wishes, Anna
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There one minute, gone the next
by LindaH- 8 replies
- 7.6k 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
- 5.3k 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
- 5.5k 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
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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
- 5.1k 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
- 7.4k 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
- 20.2k 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
- 4.8k 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
- 6.9k 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
- 5.7k views
I see its your birthday today! Hope you're having a good day! Julia x
