Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
652 topics in this forum
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CA ANTIGEN 19-9 raised level
by Lcb2024- 0 replies
- 201 views
Hi all. My dad who is in his early 80s recently had his blood tests done and had one abnormal reading - his CA Antigen 19-9 level was just over 50. Normal range is around 27. I've heard that high levels of CA 19-9 tends to be associated with cancer of the pancreas, bowel, gallbladder, bile duct, lung. Is this true? He has had no symptoms apart from the right side of his abdomen gets distended. He has been referred to further tests (CT scan) in a couple of weeks so not long to wait. But just wondering if anyone has had these high levels of this CA 19-9 Antigen and what this usually means??
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I don't know where to begin
by zabka- 1 follower
- 5 replies
- 593 views
Hello. I'd never given pancreatic cancer a second thought until Monday of this week. Since then I've been desperately reading and researching and trawling through people's experiences on this and other forums. What an excellent resource this website is - credit to all who keep it up and running. Today has been one of the weirdest days of my life. On Saturday 27th July, my partner (K) and I nipped to her sister's (M) house down the road to celebrate her 43rd birthday. We sat and ate some food, watched a film, had a beer. It was like any other relaxed birthday. Except for her partner (P, 47), who looked pale and was complaining of stomach…
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Feeling Lost
by moonflight- 1 follower
- 0 replies
- 436 views
Hi everyone, My Mum (75) ended up in hospital last week, and ended up with a diagnosis of PC (amongst a few other things). I'm currently on maternity leave and live almost 4 hours away, so lots of time to think and get limited in what I can do. There's a few things that just don't add up and wondered if anyone could share their experiences? Firstly, she said she's been told they've caught it very early and it will only need tablet chemo, not surgery. From what I've read so far, it sounds like surgery is the initial go-to if they catch it early, so saying they won't do surgery doesn't sound good. Does anyone known of someone just b…
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Our short journey
by norty14- 5 replies
- 3.4k views
I've been reading these posts since my mum was diagnosed and I guess nows the time to share our journey My mum has been receiving tests for diabetes since the start of the year. At the start of June this turned to sever abdominal pain and lack of appetite and so she was sent from the doctors to the hospital for further tests, just 24 hrs later she was told there was a shadow on her pancreas. The following days seem like a blur but further tests were done over the next 7 days and it was confirmed that there was a tumor on her pancreas that had also spread to her stomach. At this point we were told it was inoperable. This was around the 16th June this year. …
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Bloated tummy
by JMUM- 0 replies
- 1.2k views
Hi, im new to this forum & just seeing if anybody else's loved one has had similar. My mum is 2 years into this awaful journey she is terminally ill ,no surgery done 2 rounds of chemo but done so well. Just had her stent unblocked again ( had it done same time last year aswell) but over a week on & her stomach is very bloated and she is sick/ diarrhoea every morning for past few days but seems to get better by afternoon. Ive read online about destended stomach towards the later stages swollen ankles which she has, & paramedic that came said the same about stomach. but GP thinks it could be trapped wind or bowel issue but mum is going to the loo ok. Anyone e…
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My dad lost his fight
by sideliner- 1 reply
- 1.2k views
Hi guys - first post but this has been a helpful forum to read and not feel so alone - we are in Australia; but this was the only forum I could find for pancreas cancer. Tldr : my dad symptoms March 2022 diagnosed 1st Nov 2023 Deceased 4th August 2023 My dad started getting symptoms in around March 2022; (reflux; bloating; followed by unusual blood clots and kidney infections) He was officially diagnosed in November 2022 Started chemo in around December; started off feeling really well - he was putting weight on with the beginning of chemo as it attacked the tumour. Chemo started to get on top of him and they stopped it a…
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- 2 replies
- 1.8k views
It's hard to believe and accept that your only child got cancer at this age. Just a month ago she was attending university and rushing to complete her projects before Spring break and applying to placements. She even had her interview in her ward before the cruel diagnosis put everything upside down. On my end, my life was just going back to normal after my husband's passing from COVID almost 3 years ago. I wonder what else should I expect from life? In 2021, my daughter started studying in the UK. We traveled together from NYC when she moved; this was our first trip to the UK. I haven't come back until now when she was hospitalized in a neighbori…
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High Fat Diet
by Alpine Dreaming- 3 replies
- 2.1k views
I'm caring for a family member who has metastatic pancreatic cancer and is due to start chemo shortly. He is really struggling to eat - lack of appetite and when he does eat it gives him awful stomach pain which can keep him awake at night. He's been told by a nurse that he should have a high protein, high fat diet and I wondered if this sounds correct. I think high protein sounds right but I wondered about high fat as that might be difficult for his pancreas to manage? I'm not keen on questioning the nurse's advice as I'm not qualified but he is feeling very unwell and spends most of his time in bed with very little energy, so I'm just trying to see what might help.…
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- 4 replies
- 2.5k views
At the start of November my mother was diagnosed with the Norovirus by a GP over the telephone, a month later she developed Jaundice, she went back to the GP, bloods were followed by an CT and then an MRI all within three days. We knew there was a mass in the pancreas on the 13th December, but did not have a follow up appointment until 30th December, during which time she was very unwell. A stent was fitted in January and a biopsy of the mass taken and brushes of the CBD. Three weeks later another appointment to confirm the mass was malignant. Two weeks later another appointment with a General surgeon to discuss the possibility of the Whipple, although by now the orig…
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Mum passed away
by Windbeneathmywings- 1 follower
- 6 replies
- 3.4k views
Just over a week ago my beautiful Mum passed away from this awful disease. I am struggling to come to terms with it. She was diagnosed in September 2022,but the cancer hadn't spread 3 weeks before she died. I can't understand how she went so quickly. Is it common to progress so rapidly? I am traumatised by her suffering at the end. She was in so much pain. I keep wondering if she could have had longer had her care been better. Her final few day end of life care I can't fault, but she just seemed left as a victim of the struggling NHS before then. I'm feeling guilty thinking I should have done more.
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- 1 reply
- 2.1k views
Has there been anyone who is cured of BRPC (late stage II or early Stage III)?
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Moving to hospice
by chelle50- 1 follower
- 2 replies
- 1.9k views
Dad's moving to a hospice from hospital. He was diagnosed 2nd November and has been in hospital since 23rd November. Clots in lung and stents placed on bile duct. He's just getting weaker and weaker and it's horrible.
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- 6 replies
- 3.1k views
Hi everyone, this is my first time posting. My mum has recently been diagnosed with pancreatic cancer with new concerns it has spread to her lungs but not confirmed. we are awaiting an up to date scan as her last scan was back in June. Everything seems to be taking a long time and in the past 3 months my mums quality of life has deteriorated. My mum is 56, she is usually full of life, energetic and is active and healthy. She has like many of the stories of loved ones here lost a lot of weight and now she is a size 6 and under 8 stone. I am 29 and have a small baby which I am grateful that my mum has been able to meet and share memories with but I am ever so scared that my…
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Failed stent procedure for jaundice
by Beans12- 4 replies
- 3.5k views
Hello everyone, I'm new here, trying to cope with my brother's recent diagnosis of pancreatic cancer, and failing badly. Today he was supposed to have a stent fitted to help clear his jaundice-he shoud've had a P.E.T scan on Tuesday, but was "forgotten" by the porters/medical team, long story....that is supposedly happening tomorrow. But the surgeon couldn't fit the stent, my brother thinks he heard him say there was "too much bile" or something like that.So, what happens re the jaundice now, is there anything else they can do to reduce it, at least? I expected this bit to be fairly straight forward for him, should've known it wouldn't be. Has anyone else faced this …
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Al .M.
by AllyAmcs- 1 reply
- 1.6k views
Hello! Spent the weekend reading so many tough stories, but they helped. My biggest dilemma...Christmas.. where to be, what to buy....randomly! My Mum was diagnosed in June, she's ok, having a bit of Chemo but she's sad...quite mean to us all after the Chemo but hey ho I read moods are the norm. I don't know what to expect other than this isn't good. She's well supported but feel so far away.
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Dadās Diagnosis - Feeling helpless :( 1 2
by Sonia1- 32 replies
- 12.6k views
Like many of you, I find myself on here reading endless stories of how this dreadful cancer has turned our lives upside down. Dad was admitted into hospital on 12th May following significant weight loss, jaundice, abdominal pain and constant sickness to the point he couldnāt even keep a sip of water down him. The hospital organise a ERCP for 16th May to put a stent in the bile duct and fight the jaundice. This failed due to the obstruction. On 19th May we had a PTC where they put a bag on him to drain the bile externally. He also had a feeding NJ tube inserted so he can get some nutrition. 24th May we are told he has pancreati…
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End of a short journey for my husband
by Carol Jane- 3 replies
- 3k views
Yesterday my lovely husband of 35 years passed away peacefully at the local hospice with my sister and I holding his hands. He was 59 years of age and so full of life and enthusiasm. Our story is similar to others that I have read in the past few weeks and sharing them has helped me feel I had some knowledge to deal with this and help support him. Jon had survived 2 bowel cancer operations (first aged 26 and then pre cancerous growth picked up by routine endoscopy in 2019) and made a very full and active life for both of us. He was well respected at work, we had a happy marriage, were able to travel and had many friends through our hobbies. …
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Don't know what more to do
by Helenm- 6 replies
- 2.3k views
Hi, so my Dad is coming to the end we think. He has done chemos, done part of a drug trial and is pretty ill now. Pain is becoming difficult to manage and getting him to eat is really difficult too. He's obviously lost loads of weight. This is made worse by constipation that he can't shift even after weeks or even months of sachets and more recently senna tablets. He's been having the meal replacement shakes, but sometimes now he can only manage half of one. He's also dehydrated and now finding it hard swallowing tablets, so no chance of taking creon if the docs would prescribe it. Mum is trying her best to offer food and drink but most of the time he ref…
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Mum gone š
by Mrs T- 11 replies
- 3.1k views
In June 2022, we found out that my best friend, my mum had stage 4 PC. 63 years young. This was after numerous tests and scans due to Unexplained weight loss, lack of appetite, feeling full, tiredness and excessive burping. I was with her when we found out the news. She lost her brother to the same thing 18months prior, which made it worse as we all knew what was to come. She took the news so well and was such an inspiration. She was given 6months to live. We had to wait a week for a oncolgy appointment, which is ridiculous. She decided against treatment. We had a phone appointment with a dietician , which was informative but unfortunately a few days later …
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Our Family's Story
by AmandaJayne- 9 replies
- 2.4k views
Hello. This is my first time posting, having visited this forum several times over the past year. My lovely mam was diagnosed with this dreadful disease in August 2020 and the diagnosis has devastated us all. Having endured 18 gruelling months of chemotherapy, it now looks as though mam's journey of battling this vile cancer is coming to an end. It's been such a horrendous couple of years for us all, coming to terms with a future without our lovely mam, being so painfully aware of our limited time together being further compounded by the Covid restrictions. I know people talk about a 'living nightmare' but truly I feel as though this is what we'…
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- 2 replies
- 2.1k views
Hi everyone This is my first time posting.My Dad has stage 4 inoperable pan can. His main symptom which is really affecting his quality of life and getting him down is diarrhoea.He can have multiple episodes of this per day. It is unpredictable so he is frightened to leave the house and has now lost significant amount of weight as a result.I'm so sad for him and desperate to help in any way I can. The severity of this issue doesn't seem to have been acknowledged by healthcare professionals and there doesn't seems to be anyone giving advice specific to him. He takes imodium daily and creon. I'm wondering if anyone has had similar experience and if they can share …
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Encouraging meals
by Andy H- 1 reply
- 2.3k views
Good morning, this is my first post so I hope some kind folk can offer some suggestions for me. My darling wife who is 54 years of age has recently been diagnosed with pancreatic cancer with secondaries in the liver and lymph nodes. The shock was immense and contributed to ruining her appetite. I am trying to encourage her to eat and obviously these need to be high calorific meals so that she will be able to cope with the imminent chemo which she starts in two weeks. I have managed to maintain her weight thus far but would really appreciate some ideas for exciting, smaller meals. She cannot eat much so Iām trying the little and often approach. Any ideas please ? …
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Heidelburg University Hospital,
by Annabelle- 2 replies
- 9.9k views
Hi Everyone, Does anybody out there dealing with this horrid disease have any experience of treatment at Heidelburg University, I found a thread on one of the forums here but it was dated 2013/14 and I havent been able to find anything more recent. Many thanks and wishing everyone here much love and strength for 2019. Ann W
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Our journey is finally over :(
by westlondongirl- 1 reply
- 2.3k views
Our journey is finally over. My then 86 year old Mum started feeling unwell (unknown to me or my brother at the time) in April 2020 just as the first lockdown kicked in. Although she went to our GP who booked her in for an urgent CT scan with the NHS, when we tried to arrange a date, the NHS said that they were unable to do a scan for months due to Covid. My father, then 90 decided to pay for a private CT scan, booked late on a Friday for a Monday morning appointment. This cost just over Ā£1K. Next day following the scan at 9am our GP was on the phone to Mum to say that she had pancreatic cancer. Mum struggled for 22 months with chemo, issues wi…
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My best friend, soul mate and loveliest husband and father to our two children 11 and 8 was diagnosed shockingly on the 22nd of Oct this year ā2020 and passed away at home the 26th oct this year. 4 days! We had 4 days! The week before he, a teacher, was teaching a class of 30 children primary school age and walking 38000 steps a day with our dog. He complained mildly of constipation and right sided pain at the beginning of October but X-rays and uss showed nothing. We carried on as normal. Sunday he was in bed with pain out of the blue, by Monday The jaundice happened over night. GP referred to hosp ?gallstones?pancreatitis. No.... pancreatic cancer with liver mets and lu…
