Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
653 topics in this forum
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My mum's story so far.... 1 2
by ali40- 31 replies
- 28.4k views
Hi to everyone, so glad to have found this site, had not really heard of PC or known anyone with it so feel like we've been thrown in the deep end and it's nice to get both sides of what can happen, to be prepared. Mum's story started in Aug 2011 after several visits to gp for constipation,heartburn and pain in her right side she was given an ultra sound scan, gall stones diagonesed and 3 weeks later her gall bladder was removed by keyhole surgery (now wondering if they had opened her up would they have seen tumor?). Op went well she didn't feel much better and when she went for her 6 week post op check she was starting to get jaundice, scanned imediatly and a roam…
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CA-19-9 rising
by Davidben83- 1 reply
- 4.3k views
Hi My father has had Gemacatabine for the past four months following a Whipple Procedure. His CA19-9 reading seemed to have stablised at around 50 but suddenly jumped to 105 one week and then was 107 the following. I am fearing re-occurence. Is that the most likely reason for this? Thanks David
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My Dad, gone so soon
by lorn- 7 replies
- 7.9k views
Hello, I came across PC.org site when my dad was diagnosed with PC 6 weeks ago. My poor mum was so in the dark about PC I sent off for the booklet, she and my dad found this a gentle informative read. I started researching PC to find out exactly what it entailed and how best we could help my dad and his fight against this truly dreadful disease. I began reading many peoples situations and was about to start writing on this forum myself when my dad suddenly collapsed 3 weeks ago and heartbreakingly he died a week later. I am utterly devastated and still in total shock as are my family and my mum...4 weeks from diagnosis to...gone...all those questions..why didnt we know …
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Not sure what to think....
by jjsmith85- 15 replies
- 12.1k views
My Dad started to be ill around 56 weeks ago after a fall in the garden. He is 79 years young and was very active. He started just feeling unwell, fatigued, weight loss and then the jaundice followed with diahorreah but no pain. He was referred to a general consultant and after ultra sound scans and MRI it was shown he had a lump at the top of the pancreas which was pushing agaist the bile duct so not allowing bile to flow. He then had the ERCP and a stent was inserted into his bile duct (plastic temporary one) to allow the bile to flow. They also took some brushes of the area but to date we have had no results of this. The other day we received a letter from the con…
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Really confused 1 2
by Barbara2- 37 replies
- 27.4k views
Hi, i'm looking for some help, my husband has just been 'diagnosed' following a ct scan with pancreatic cancer which appears to have spread to the liver, both lungs and bowel. The results were coveyed by our GP. This was devastating news for us and he is in some pain but his biggest problem currently is jaundice which is causing him extreme discomfort. At present we have been waiting nearly 3 weeks to see anyone from the hospital and this is my concern, he has not seen a consultant, had a formal diagnosis or any opportunity to hear a prognosis in his case. I have pursued the hospital and a nurse made contact and advised there had been a delay because the referral had gone…
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- 3 replies
- 4.6k views
Hi all, My father (63) was diagnosed with PC at the start of this year. He had been having pains in his back and suddenly became diabetic. Walked into intensive care who initially panicked about his blood sugar level before testing his for Ca19-9 which was sky high. Five days later he had the whipple. 6/24 lympth nodes were positive and they did not get their margins, but I am grateful that he was able to have it all. Oncologist told him he had a ten percent chance of being alive in five years and started him on Gemacatabine. The reason I am writing is because the Gemacatabine, half way through the treatment, does not seem to be working that well judging by his Ca…
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Micro Creon
by rachelqt- 0 replies
- 3.5k views
Hi everyone, Just out of interest has anybody ever had Micro Creon granules? Is it the same strength as the capsules/powder. The chemist finally got it ordered in for dad and for some reason we thought there would have been loads of it, except we were very surprised to get a very small tub with a scoop half the size of a finger nail (which dad thinks is great..lol) Just was wondering if this is new or maybe I have it all wrong? Thanks Rachel xx
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Dads Scan
by rachelqt- 10 replies
- 8.3k views
Hi Everyone, Just a quick question, How long approx does it take for scan results? Dad has had his scan on the 16th April and we have heard nothing yet about his results. He is happy enough to wait on them and does not want to chase up on it but as you can imagine my mum and I are getting very impatient! Hope everyone is well Thanks Rachel x
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Much loved memorial site
by lynbo- 8 replies
- 7k views
Hi After reading Steve & Gill post and seeing the much loved site they set up for their father, I would just like to say that for anyone on here who has lost a loved one it's a beautiful way to remember them. I set one up for my Andy, it has many photographs and music, and tells a little bit about him too. People have left thoughts on it at Christmas, his birthday, the anniversary. I find it a comfort to read, as ... Some of the thoughts are from people he went to school with or grew up with, who I have never met. It just shows how much love and respect he had. It's free to set up, and people have donated to PCUK through it too. If you would like to see what it…
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Hello all , my wife was diagnosed in April last year and had the whipple procedure to remove a tumor in the head of the pancreas and around the main artery . The surgery was a success and they were able to remove 20 lymph nodes from the area , unfortunately 8 of the nodes had cancer. We had a great family holiday in July and she was doing fairly well after the op. Chemo started in august but a scan in Oct showed 3 tumors in the liver and swollen nodes pressing against the spinal nerves. This caused a lot of pain for her and she was put on oxycontin and oxynorm for breakthrough . The type of chemo changed from tablet to drip and she tolerated it very well. From diagnosis …
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Hello all, I'm new here and am very grateful for this site which has lots of information. My Dad who is 76 has recently been diagnosed with PC and has been told it is inoperable because of the position on the pancreas. Although only diagnosed just before Xmas he had been going downhill for quite a few months with Doctors thinking he had diabetes at first and it was only in late November that a doctor got him in hospital for further tests confirming the problem. The only good news is that the cancer has not spread anywhere else and his liver is fine. He has lost quite a lot of weight and his appetite too although he is eating fairly well. Luckily he has no pain but …
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Mum just diagnosed
by fionak- 10 replies
- 8.5k views
Hello everyone I am so relieved to have found this site. My Mum was diagnosed yesterday with pancreatic cancer and mets to the liver. It is really unbelievable; she feels fine so far, with absolutely no symptoms apart from occasional abdominal aches which (naively) we had put down to the anxiety she has been suffering since my Dad's sudden death from colon cancer last July. In fact it was only because of his experiences that she was worried enough to go to the GP. The tumour is 3cm, in the tail of the pancreas. She has a biopsy next Tuesday to work out whether the tumour is neoendocrine and so if it can be operated on. But looking online, this doesn't look very likely?…
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Mum in pain - please help
by Charlotte- 3 replies
- 5k views
Hello everyone, I haven't posted on here for quite a long time... My mum was diagnosed in March last year and finished chemo at the beginning of December. She had responded quite well to the treatment at first and thankfully has been able to spend some precious time with her two grandchildren, my son Isaac who was born last August, and his cousin Alma, who was born on Boxing Day. She also managed to come to my wedding in January, stayed right to the end and danced and everything. Since then she's been deteriorating quite rapidly - you will all know how painful that is to watch. Over the past week or two she's been suffering with more and more pain, to the point…
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Nicki
by lynbo- 11 replies
- 8.1k views
Hi Nicki I decided to start a new thread in this topic as I feel you are a 'friend' to many, I saw on a previous post that Ted is not doing so well, just wanted to pass on that I'm thinking of you, and sending love, stay strong my friend Xxxxxxx
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Confused
by suri- 1 reply
- 3.3k views
Hi My husband was diagnosed with an inoperable pancreatic tumour in January 2011. Throughout last year he was treated with gemcitabine for 3 months, followed by radiotherapy and 5FU for 34 treatments and then a further 3 months of gemcitabine. Towards Christmas he was looking and feeling better, had managed to regain weight and all signs were that the tumour had shrunk. However, in early January this year, he began to once again experience pain in his abdomen and back and began to lose weight. The pain was thought to relate to a large gall stone, so after a PET scan to ensure that there was no evidence of metastases, he had surgery to remove his gall bladder. The PET sca…
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Helicobacter Pyrori & Pancreatic Can
by Guest kchardman- 2 replies
- 7.3k views
In 2002 my dear wife had a test fo H Pyrori which proved Negative. In the Sept. of 2005 my wife was having pains in her stomach area & back & was tested again for H Pyrori this time it was Positive . After treatment for H P the pain remained & after some delay my wife was confirmed to have Pancreatic Cancer. Have any of your loved ones had a test for H Pyrori with results of positive or negative to this infection & also have Pancreatic Cancer
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Losing my mum to PC
by Gem39- 20 replies
- 21.6k views
Hello This is my first posting on the forum, although I have read others experiences from time to time, always reducing me to tears. My husband feels I need to speak to someone as this past week I seem to be falling into a deep depression, suffering from severe headaches and crying a lot. My mum was diagnosed last Oct (she is 82) and was told, while alone in the hospital bed with a curtain pulled around her, that there was nothing could be done and she "did not have long". We were due for visiting in less than an hour, but no, the consultant couldnt have waited until we were there??? The following day he arranged to talk to us, and told us it was likely weeks …
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money raised
by louiepc- 5 replies
- 4.5k views
We had a letter from the funeral directors yesterday. Total amount of money raised for pancreatic cancer at mums funeral was £250. We had two charities instead of flowers. I am very pleased. I am just about to go to a rememberance service for recently departed at the ellenor hospice, a sad time I'm sure. I hope everyone is well, will chat again soon. Louie xxx
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Just because we don't see it
by Nardobd- 5 replies
- 5.1k views
Ted went to see his consultant today and his Clinicial Nurse Specialist (CNS) was there. The CNS asked about Jeni (PCUK support manager) and what she was like because Jeni will be visiting her shortly to discuss PCUK and providing support to pancreatic cancer patients. Of course, I told her that Jeni was the most awful person I know...then burst out laughing, which spoilt my teasing! (in case anyone reading doesn't know Jeni, she is the most lovely, down-to-earth, caring person you could wish to meet). It's easy to assume that because we don't normally hear about the work that PCUK are doing in the background that nothing is happening, so I'd like to thank Jeni…
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Louiepc
by Mistipop- 5 replies
- 5.5k views
Will be thinking of you tomorrow Louie. You're mum will be with you and she will be so proud of you. Misti XXX
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My Amazing Dad
by AnthonysDaughter- 9 replies
- 7.6k views
My father died on the 24th January 2012, also my 31st birthday. He battled for 7months and we; my mother and sister were with him as much as we could be, providing him with 24 hour care. He is my hero, the most amazing father i could ever wish for, his main fault? Protecting us too much. I say this because i feel like a 12 year old again, he was the one i turned to to ask all of my questions, he seemed to know everything about everything! My partner came round once and saw my dad wondering up the stairs with copper piping, when asked what he was doing, the reply was, 'fixing the central heating' as if it was the most normal occurance! He was mr practical and mr fix it, ev…
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mum's birthday in the hospice
by Mistipop- 7 replies
- 8k views
So all hopes for getting mum home this afternoon for her birthday were dashed. This morning the nurses helped her have a bath, do her hair and get ready for a few hours at home to celebrate her 65th birthday. sadly she was quite confused and panicky about the whole thing so the nurses thought it would be better if the party came to her! (balloons and banners down for a trip across town!) We actually had a really lovely afternoon, she managed to stay awake, ate a little and enjoyed her time with her grandchildren (we had permisssion to take them out of school) All went better than we had dared dream.... until 10 mins before we left she threw up whilst taking her paracet…
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My Ivan Gone
by LizzyD- 9 replies
- 7.1k views
I haven't posted for some time as all my waking hours were taken up with looking after my husband Ivan in his final 3 months ofPC. Sadly he lost his battle on Friday 13th. I had wonderful support from our fabulous GP, district nurses and two of the most superb carers who all help to grant Ivan's wish to die at home. As you can imagine, I don't know how I feel about anything at the moment. Just a crazy mix of emotion. I have been helped so much by this forum and wanted to thank you all. God bless you all, Lizzy
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2 weeks gone
by louiepc- 3 replies
- 5k views
Hi everyone Thank you all so much for your lovely responses and thoughts. They have been a wonderful comfort to me. I cannot believe how many new people are on here since my lovely mum has passed. It is so very sad and tragic, and it makes me even more determined that I am not going to let my mum's death go in vain. This is an awful cancer, and I am so incredibly angry at this cancer, it seems that you have more chance of winning the lottery than beating this aggressive, secretive, destructive cancer. I am definately going to raise money and the profile of this hideous disease, so that hopefully, in the not too distant future it may turn out that earlier dia…
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Advice again please!
by Daddysgirl71- 3 replies
- 5k views
Hi everyone, Dad was diagnosed in April this year and had his op in June, as far as the consultant was concerned all the cancer had been taken but biopsy showed a slight spread to some lymph nodes. He was to have 18 courses of chemo in 3 wk blocks. He has gone every week to this getting thinner and thinner and weaker and weaker with no help and hardly any medical input..His G.P has never treated anyone with it before?? It wasn't till he had an appointment with his consultant that did the whipples last week and heard him gasp at the state of my dad that anyone has taken any notice! They immediately stopped his chemo( just 3 to go) and referred him to a nutritionist . W…