Patient Experience Forum
A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).
280 topics in this forum
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app
by LindaH- 3 replies
- 7.3k views
I have received my appointment to speak to an oncologist at XXX. The oncologist who is already treating me at my local hospital is eager for me to go and said he will do all he can to assist. My app is next Thursday. I'm trying not to get my hopes up to much, it's not like they are going to wave a magic wand and all will be okay, but it's a second opinion and that is what I need right now. Even if they say the treatment I am receiving at the moment is fine, well that's fine by me, you never know, they may have something tucked away in their top drawer just waiting for me...I can hope and pray. As good news comes in …
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Talking to others with pancreatic cancer
by Grahameford123- 5 replies
- 8.8k views
Hello, I was 47 years old when diagnosed July 2011 Whipples surgery to try remove Discover cholongico carcinoma stage 3 Recurrance in pancreas April 2012 6 rounds of Gemcis Living from bi monthly scan to scan Fed up, stressed out and hurting that's me x Hey if any pancreatic cancers Want to meet up would de. Nice Email:
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felt sick before I even started...
by LindaH- 18 replies
- 20.2k views
I went for my third session of Chemo yesterday, but even though I was booked in for 9am, the Chemo hadn't arrived so they set me going on the 'Wash out' solution (something about washing out your liver) but an hour and a half later the Chemo hadn't arrived, so they kept the wash out going. I had some light lunch and about half an hour later I started to feel really sick. They gave me an anti-sickness tablet, but it didn't seem to work. I then had to sit through over an hour of Chemo. I couldn't work out whether it was because of my lunch, or because of too much wash out solution. Has this happened to anyone else? When home, I took a stronger anti-sickness had a b…
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interesting article
by LindaH- 5 replies
- 8.4k views
I don't know if articles from news papers are allowed to be posted on the boards, so please feel free to delete the article if not, plus I hope I'm posting on the correct board....sorry if not, please feel free to move. http://www.bbc.co.uk/news/uk-england-coventry-warwickshire-21471513 Linda x
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Slight set back...
by LindaH- 2 replies
- 7.3k views
Before I started Chemo on March 1st I was given a CT scan. I wasn't given any results of the scan other than a nurse phoned me to explain that my Chemo would be going ahead on March 1st, so I presumed nothing had changed from my last scan in December. We went to see my consultant on Thursday and apparently the cancer has spread 'slightly' (his words) into my liver.... I asked him if he was overly concerned by this, he said "Not at all", also saying if the chemo works, it will also stop the cancer in my liver. I do trust his word, he has been absolutely honest with me all along the line, so I guess if he's not worried, then neither should I worry....but it's hard not…
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- 23 replies
- 21.9k views
Hi, I went into hospital on December 2nd because I was totally yellow. It was Jaundice and developed Diabetes. CT scan two days later revealed an enlarged liver and a 6cm tumour in my pancreas. I was told by the Gastro doctor it wasn't operable, though he was fairly sure the tumour hadn't spread out of the pancreas, so how he could just say to me there and then without further investigation that it wasn't operable, is beyond me. 2007 I was diagnosed with DCIS (Ductal Carcinoma in Situ) and my left breast was removed. Lymph nodes all clear and several scans, bones scans, mammograms and four and a half years of Tamoxifen later, in 2012 I was given the all clear.…
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Driving License...donate Pancreas?
by LindaH- 5 replies
- 12.9k views
Sorry, I'm not too sure if I'm in the right area to discuss this, but I was just so surprised when I needed to recently update my driving license due to newly aquired Diabetes, they were asking people to donate various organs should you die in a car accident and I noticed the Pancreas was one organ they ask you to donate.....why? Does this mean people can go on a waiting list to have a new Pancreas? If so, how come we are not offered this when we are seen by consultants and especially where you have an inoperable tumour? Linda
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Lack of Vitamin D
by suef- 3 replies
- 11.1k views
I had a Whipple in February 2010 and ever since I have had problems absorbing Vitamin D. Every blood test shows that my Vitamin D level is 19 and it should be 30. Under 20 is critical. As lack of this vitamin affects bones, and as I already have arthritis, I would like to have supplements, but my GP says he cannot prescribe Vitamin D as it is not a licensed drug. Has anybody else had experience of this? I try to have as much Vit D in my diet as possible and take 15-20 Creon a day.
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12 hours in and doing okay
by LindaH- 4 replies
- 8.3k views
I had my first dose of Chemo yesterday. Lovely atmosphere and nowhere near as bad as I expected it to be. I had two doses yesterday which took from 10.30am to 1pm. I have been given plenty of anti sickness tablets to bring home and steriods to take so I'm hopeful all will be okay...*touch wood*.... tummy feels a bit yuck, but I can cope....at the minute I will be having just an half hour session next Friday, then it will be every three weeks from then onward for 18 weeks. I just hope and pray with this being such a rare cancer where there are not really many statistics, that I won't be going through all this for nothing.... I have written to XX in Manchest…
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Some good news!
by Sones- 7 replies
- 10.4k views
Hi all Just wanted to let you know I'm 17 months post whipple and have just had my three monthly C19-9 blood test which has remaind the same as last time at 9.5 sooooooo pleased. Sue.xx
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FAT MALABSORPTION 4.5 YEARS AFTER WHIPLES
by Eileen08- 3 replies
- 8.8k views
Hi Just wondering if anybody had had this problem. I was expecting fat malabsorption after my Whipples and having to take pancreatic enzymes. However, I never needed them and haven't used them since the very early days. However, suddenly before Christmas I had terrible trouble with loose, smelly stools and liquid fat being passed. My doctor cannot see any reason for the change and if I take Creon things much better, but I worry about the cause of this sudden change. Tests for cancer, etc have all come back normal and my diet hasn't changed. Horrible topic but I'd be interested if anyone else has had a similar problem.
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Always cold to the extent of shivering
by LindaH- 6 replies
- 15.9k views
Since being diagnosed with PC I've had a poor appetite, food just doesn't appeal to me, so I guess I'm not really inputting enough fuel to keep the home fires burning - so to speak. I don't like taking pain killers on an empty stomach, so I'll have some soup or a small sandwich, but I'm finding of late (and I realise it is cold weather at the moment) that I get so cold I can hardly function, so I quickly wrap myself up in a blanket with an hot water bottle. Once I've had a bite to eat and taken a pain killer I am okay until I move into another room when again I start to shiver with cold, though the heating is on and the house is warm. I have heard that people wi…
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Chemo starts next Friday 1st march
by LindaH- 6 replies
- 9.4k views
I just wanted to say, I start my chemo at my local hospital next Friday. To say I am nervous - now it's so close - would be an understatement, but I am just hoping and praying like I've never prayed before, that even though I have one of the most rare cancers it's possible to have, that all will turn out good in the end. My fingers are well and truly crossed. Thanks Linda x
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Follow up from joint pain
by Sones- 7 replies
- 10.6k views
Having been sent for an ultrasound scan because I was experiencing pain in my wrist and elbow joints the radiographer said his report would be advising I was referred for a bone scan. I received a copy of the letter sent to my GP by the same consultant who referred for the bone scan stating he would review me in his clinic in a few weeks time and that I would be offered injections for the pain. Ok I was willing to go with that until I opened the second letter to arrive in the post today. This one from the same consultant who had agreed to give me that follow up appointment. guess what! the appointment is for July, nearly five months away. Yes I could get on the phone and …
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Tummy upset from Morphine....
by LindaH- 3 replies
- 8.8k views
Hi, I'm here again with my stomach problems, but does anyone else have awful stomach pains which I'm 100% certain is because of the Morphine? I never take anything on an empty stomach, I always have at least a biscuit before hand, but the old tummy isn't liking the Morphine one bit. I take 20mg in the morning and 20mg before bed, then will sometimes need a Co-Codamol 30mg/500mg during the night. My tummy of late just feels upset all the time. Does anyone have a tried and tested solution on how to alleviate the tummy upset, something I can take. I have been taking one Lansoprazole 15mg a day, but that isn't helping, but having said that it's just tummy ache, no…
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- 4 replies
- 8.7k views
Hi, My husband and I went to see the specialist last Tuesday. He started by telling us I have a very unusual cancer and one they don't really have an awful lot of information about. Something like 25 cases in the UK.....well here's case number 26 It is called Squamous Cancer of the Pancreas, this type of cancer normally appears in either the Gullet or the Rectum, so this is why the Doctor we spoke to on Tuesday was unable to give me specific life span period of people who have had this cancer, but he was hopeful he would be able to shrink the tumour with Chemotherapy and Radiotheraphy, which could kill the tumour completely so I would therefore go into remis…
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Here we go....at last
by LindaH- 3 replies
- 8.5k views
Hi, Well, after the MDT meeting last Friday morning and after what seems like a life time of wating for me, Dr [name removed - moderator] secretary phoned me Friday afternoon to make an appointment for me to see him next Tuesday 5th February....PHEW!! I don't actually know this doctor, but he resides in the Macmillan Dept of my hospital. I'm obviously rather anxious about going to see him. My hubby is coming with me and possibly my in-laws so that four pairs of ears should be enough to grasp what is being said. First, I suppose I need to have some indication as to what he will be able to do for me. I'm hoping and praying it will be Chemo with a view to shrinking …
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The back pain
by LindaH- 4 replies
- 11k views
As I said in an earlier post, I was discharged from Hospital on December 12th after being told I had a 6cm tumour in my pancreas. Still waiting to hear how the hospital are going to help me.....but that's another story. I was sent home with all my dibetes equipment, but with regard to pain control they gave me 10mg Morphine modified-release tablets take one twice a day and Zopiclone 3.75mg sleeping tablets. At first the Morphine worked fine for the pain in the middle of my back, which I believe is the nerves being suppressed by the tumour, but it wasn't long before I had to supplement the Morphine with one or two Paracetamol during the day. I stopped taking the slee…
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Looking for treatment overseas?
by PCUK Nurse Jeni- 1 reply
- 8.8k views
Have you thought about going abroad for treatment for pancreatic cancer? If so, how did you research it, and what were the differences between treatment abroad and in the UK? Did you look into treatment in Europe, or further afield? Was it a case of paying for it? What drugs were they offering? Was the treatment successful? OR -do you know of anyone diagnosed with pancreatic cancer who went abroad for treatment? We would love to hear your views. Moderator.
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Joint pain?
by Sones- 20 replies
- 21.3k views
Hi I had whipples surgery just over a year ago followed by six months of chemo which finished at the end of May this year. Over the last two/three months I have been experiencing pain in my elbow and wrist joints - my consultant doesn't think it's anything to do with the PC but arranged for another CT scan which I had yesterday. My question is has anyone else experienced any similar joint pain having had similar treatment? Sue
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post-operation blues 1 2
by dabber66- 28 replies
- 29.1k views
I am new to the forum, but have been reading the postings, I would like to 'talk' to other members, as it is all so new to me, and very frightening. I was diagnosed in August with a tumour, the future looked very bleak as it appeared to be inoperable - but it was found I had an endocrine tumour in my pancreas, spleen, and it appears my stomach as well, but how wonderful, it was operable. I have been home for two weeks now, know little about diet, but find I can only eat a little at a time, still very painful, as is my throat, the feeding tube into my tummy seemed to cause some problems - lots of niggles, really, just need someone to talk to, who may have been there…
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Support on new forum
by Sones- 0 replies
- 7.5k views
Hi I'm Sue and just wanted to reach out to anyone out there who might like to be part of this discussion forum for patients only. It took me nearly a year following my diagnosis to access this site but I'm so pleased now that I have finally done so. When I was first diagnosed I didn't know anything about PC and I can remember saying to my chemo nurse that I didn't know anyone with this type of cancer, i desperately wanted to be able to speak to someone who truely knew what i was going through. It didnt help when she said i wouldnt know anyone as it was so rare and she was unable to put me in touch with anyone either. It's frightening and you feel totally alone or at le…
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Swimming after whipples
by Daver68- 1 reply
- 8.4k views
When can you go swimming after whipples all my dressings have been removed and it is ok to have a bath but unsure about going back to swimming any replies would be appreciated . Thanks David
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Pancreatic Cancer UK - Support Line
by Support Team- 0 replies
- 8k views
Pancreatic Cancer UK runs a Support Line for anyone affected by pancreatic cancer. Our Support and Information Team can provide specialist support and information on pancreatic cancer. You can contact the service by emailing support@pancreaticcancer.org.uk The Support and Information section of our website also contains information about pancreatic cancer and some real life stories of people affected by pancreatic cancer - visit http://www.pancreaticcancer.org.uk/pcuksupport.htm
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Insurance
by LilyG- 1 reply
- 10.7k views
As per the Introduction, please contribute here with Insurance questions, issues or recommendations.