Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
649 topics in this forum
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I've been a guest on the forum since my mum was diagnosed last July. She was told it was stage 4 and inoperable as it was involving the blood vessels, it has also spread to her lungs and they think her ovaries. She hasn't taken too well to chemo, she started gemcitabine and abraxane end of August but due to neuropathy the abraxane was dropped in October. Her oncologist is a palliative oncologist at our local hospital and I've been told the local specialist hospital in xx have passed her care to them due to it being inoperable, which I'm vexed by as I still feel she'd access more options there!!! Her last scan in January showed the cancer has stayed stable no growth, but m…
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I am so worried about my dad. He has just been on the phone to me, and he is incredibly distraught. He said he has been to the toilet with bad diarrhoea at least 30 times today. He said sometimes, he didn't even make it back to the room before he had to go back. He said he has had 10, 40,000 creon with each meal, and one of those was a cup of tea and a biscuit! He said the diarrhoea is killing him. He said he can't eat, can't drink, can't leave the house, so what is the point in trying to fight. He said cancer is nothing, the diarrhoea is killing him. He said he is fed up and can't go on like this. He said no one can help him, and no one is trying to. He said a…
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Farewell
by Didge- 12 replies
- 11.3k views
Hi folks. Next month it will be the first anniversary of Rob's passing and I had already thought about withdrawing from the forum after that but I have recently been informed that some of my posts have been non-compliant with the forum rules (quite a lot of them actually!) and I have been asked to take a break from the forum for a while. Rather than come back afterwards I have decided to call it a day now. I do apologise if I have upset anyone with any of my posts at any time. It is difficult to get the balance right but it was obviously never my intention to make anyone feel bad. I am in touch with a few of you privately and I have always said that if anyone wants my…
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Mum has no appetite
by Thomasfam- 5 replies
- 7.9k views
Mum was diagnosed early this year, basically sent home with a bag of morphine to end her days at home. We were told mum had only a matter of weeks left to live, this was 6 weeks ago. Mum also came home with creons and a short course of steriods to help with her appetite which was non existent. Having had such a bad experience in hospital, ( ended up staying in hospital for 7 weeks due to negligent treatment) mum has lost all faith in medical profession. No one seems to care, and mum said they have written her off whilst she was in hospital and I tend to agree. She wants to fight this but after 4 weeks refused to have creons and has asked doctor if she can wean off steriod…
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metal stent in bile duct
by phillap- 1 reply
- 6.4k views
Please does anyone have any experience of a blocked (with sludge) metal stent becoming unblocked?
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High blood sugar
by Guest Marmalade- 11 replies
- 9.8k views
Our GP has just called to tell my 83 year old husband that he should go onto medication for high blood sugar, the figure 66 was mentioned. Problem is my husband has lost all confidence in doctors and blames the GP for not recognising the sudden onset Type II diabetes as being someone requiring more investigation 3 years ago. He's had a rough few months trying to get this diagnosis confirmed and he has also lost faith in the MDT who passed him around for months. We previously used diet to reduce his blood sugar to normal but now that he has been told he has advanced pancreatic cancer and the oncologists have guided him away from chemo due to his age, heart/stoke problem…
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Life Expectancy and Attendance Allowance
by Guest Marmalade- 9 replies
- 10k views
My 83 year old husband has PC. This was confirmed with a biopsy last week. He has a large mass in the body and tail of his pancreas 9.8cm x 4.2cm which is engulfing and occluding the splenic vein. It is compressing the superior mesenteric vein and the portal vein. It also engulfs the splenic artery. He has recently had a contrast CT for Liver and Lungs. The liver appears not to be affected and the lungs we are awaiting the results. We have been told that this is inoperable and that palliative care is all that can be offered. We will meet with oncologists to see what they may be able to offer in terms of management of symptoms but we are very concerned about how we wi…
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my dads life expectancy???
by kloweey- 15 replies
- 17.2k views
Roughly 3 weeks ago my dad was diagnosed with pancreatic cancer that's spread to his liver. He hasn't told me much about it and the outcome. Really, no one has. I know that they can't operate and he's not having chemo. He's been sent home with nurses to look after him and he's currently on morphine and other pain relief. So yeah, I'm just wondering about other peoples experiences and if anyone can tell me roughly how long he might have left????
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End of life care
by sandraW- 4 replies
- 6.6k views
In view of what we have been discussing about end of life care I thought this might be of interest to some of the posters on here. .I found it interesting http://www.hospiceuk.org/media-centre/press-releases/details/2015/12/16/hospice-uk-s-response-to-new-nice-guidance-on-the-care-of-dying-adults http://www.nice.org.uk/guidance/NG31/chapter/1-Recommendations#communication sandrax
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tissue bank
by Didge- 2 replies
- 6.3k views
You may have seen on the news that the pancreatic cancer tissue bank has launched. I donated samples last November at the pancreatic cancer research fund conference as they also want 'healthy' donors. Not sure if they still want a control group but might be worth asking if you are interested!
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My dad has being diagnosed with inoperable pancreatic cancer at the head of his pancreas, it is locally advanced but unable to operate as it is on an artery. He is having chemotherapy fortnightly, but has been unwell so is missing this one, and they have reduced it. He has lost over 6 stone in weight since November 14, but i think a lot of it was the stress. His moods are very up and down, more down then up, and i find it so hard to be strong.I woukd like to know if other people are going through the same, as he feels so isolated and he we just dont know the outcome. I woukd appreciate any feedback if anyone has the same diagnosis or has gone through it as i feel really h…
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Coming to terms with diagnosis
by Spirt1367- 1 reply
- 6.7k views
About 18 months ago my father was diagnosed with pancreatic cancer and underwent major surgery and 6 months of chemo. Scans since then had been clear but last week he was told it was now in his lung and on his liver and he has between 9-12 months to live. A number of emotions go through my mind wanting to enjoy every moment left, not quite believing it's true and that when one of the people you love most in the world is going to die feeling guilty about enjoying life. I think he has probably decided that he will not have any more chemo as he doesn't want the side effects and wants to be able to enjoy his time left: this I can understand. If anyone has any pieces of adv…
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- 3 replies
- 8.5k views
Hi All, This is my first post on here since my father (64) was diagnosed with APC, and is now on the second treatment of the first cycle of Abraxane/Gem. Prior to treatment he had worsening back pain, but a good appetite and energy. We are now two weeks into the chemotherapy, and he has barely eaten. His weight, energy and general state have declined significantly. He has issues with chronic wind/bloating which are preventing him from eating, due to the pain and discomfort that ensues after eating. He is on Lansoprazole (1 a day), domperidone (3 a day with food), Creon (before food) and ramipril, as well as Cocodamol 30/500 (8 a day). Does anyone here h…
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- 14 replies
- 11k views
Just to update on John's situation, I haven't been on here for a while. John is now in the local St Margaret's Hospice receiving wonderful care & attention. Not sure of timeframes but as he is unable to eat and drinks minimally, it is looking to be sooner rather than later. Pain is increasing almost daily & with that the opioids are stepped up and John is a little more tired & sleepy each day. Children (& the dog!) are visiting and All we can do now is wait. I would like to thank each and everyone of you who shared experiences and offered advice on this forum. You have been more helpful than you know. Good luck & best wishes to all those of you fight…
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New funding for pancreatic research
by stmfst- 4 replies
- 7.6k views
Good evening all, Well, in common with many others, it has taken me a while to finally post. My husband was diagnosed in April with locally advanced pancreatic adenocarcinoma after several missed opportunities (grr!) but as many of you have experienced this, I don't need to expand any further. As so many of you have so eloquently written about your loved ones, I too am lost in awe at his positive outlook, his stoicism and his sheer bloody mindedness. I am sure I would not be as brave and resolute. He has so far had 11 Folforinox treatments, with the last one (at least for the time being) due this Thursday, blood tests permitting. Once you come into contact with th…
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Husband J Severe D & V 1 2
by ElsieG- 26 replies
- 16.6k views
Hello, apologies if I get any protocol wrong or write in the wrong place. My husband was diagnosed with Advanced PC with Liver Mets on 26th June this year. Prognosis poor so as he dearly wants to be here to see our Grandchild born on Jan 9th 2016, he opted to try Folfirinox which offered him the best chance of gaining time. He had 1st dose on 28th July and after a good few days after, rapidly went downhill and is currently in hospital with severe D & V, dehydration. He is receiving as good care as we can hope but it is hard, particularly as hospital moved him on Friday 14th at midnight to a room with no toilet only a commode. You can imagine the devastation this has c…
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Having not posted for a while, my darling has been in a lot more pain since his radiotherapy to blast one tumour, having had the other ablated. The latest scan shows that there are now livers tumours in every section of the liver so the prognosis from last summer of this July (I know they are only averages) looks horribly likely. We are both hoping we get to celebrate our big birthdays next month. Sorry that the run of good(ish) news has come to an end. In a lot of cases, chemo is like poking it with a stick and makes it more aggressive, which is what has happened to us - others find it keeps it at bay for a long time. If only we knew which was which! Hopefully indi…
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Roger's Story 1 2 3
by kittycat- 73 replies
- 44.9k views
Well, I knew absolutely nothing about PC until a couple of weeks ago when my darling Roger was taken ill on holiday with jaundice. He's diabetic and had been losing weight over the last year, but our medical professionals at home seemed to be in denial and did nothing, but he was diagnosed with inoperable PC only 2 days after being admitted to hospital, which was a complete bolt out of the blue!!! He quickly had a stent fitted to drain away the bile and we were able to return home after a week - we've never wanted to get home from holiday as fast in our lives! Once back, he was still very weak but Oncologist and Endoscopy appointments were soon in place and a course of…
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Steve's story 1 2
by sheena- 25 replies
- 17.8k views
My hubby Steve is 68 all his life has been dedicated to looking after children from troubled families.He is my second husband and has been a devoted stepfather to my 7 children .I cannot remember a day when he was sick always strong dependable and hard working.how can life change so quickly ,we know find ourselves facing this rotten pc ,why is life so cruel? What did we do to deserve this .Steve is so brave he hasn't cried been angry just taken it in his stride.I on the other hand have been the opposite I've cried buckets cursed shouted and been so angry at times I've scared myself.where do we go now knowing Steve has a death sentence hanging over him .Will it be tomorrow…
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When is it the end?
by Jammydodger- 10 replies
- 9.5k views
Dad's now in his final weeks & it's devastating to see someone so strong reduced to nothing. He now eats very, very little, sleeps a lot, is really down & starting to have a few bouts of confusion. Friday he was in tears & very emotional, today he hardly spoke. I live an hour away & mum & dad want him at home. We have district nurses in every day, Macmillan nurses are on board & now we are going to get continual care in daily. The good news is that he is still mobile, not sure how long for. How will I know the end is coming, I know more sleep, but just want to be there in the end.
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Learning a lot!
by Jammydodger- 4 replies
- 5.9k views
First post, don't really know what to say if know what I am looking for, but sadly I am experiencing pancreatic cancer in our family for the 2nd time. We lost my father in law 10yrs ago and now my father has been diagnosed 6mths ago. Frustrated isn't the word! Like most, the diagnosis came through eventually after several tests, jaundice, stents, etc . The tumour could not be removed as wrapped around the portal vein, so he had a bypass (not complete whipp les) he also has spot on the peritoneum & small bowel. I feel like I really don't get the answers. He started chemo, but ending up missing so many as his blood counts etc were not right, he has now just start…
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Mum's battle 1 2
by bevstar- 29 replies
- 20.2k views
I haven't posted for over 12 months but have read the posts almost daily. Mum was diagnosed last April with inoperable pc a tumour at the head of the pancreas. She had a stent fitted and decided not to have chemo. The stent helped with jaundice but her appetite slowly declined she has lost 3 stone. Mum is 83 this year and has been doing really well she has had good days as well as bad. This last few weeks she has had stomach pain and back pain so had a scan last week the results came back the cancer has spread to her liver and lungs. She is on morphine now to help with pain but has been sick and dizzy. Mum is a very positive person I am sure that has helped her on this jo…
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emails
by Didge- 0 replies
- 5.7k views
I have recently discovered that some people have emailed me but I did not get the emails so if anyone has not received a response I was not ignoring you. I am happy for anyone to email me if they want, just ask the admin but if I don't respond I've not got the email so try again!
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- 3 replies
- 5.3k views
My Mum, 85, has just been diagnosed with Primary Pancreatic Cancer and secondary Liver cancer and I am not getting any immediate answers as to treatment, prognosis, care from the hospital, I will be caring for my mum at home and I feel like I am in free fall at the moment with no facts, please can anyone advise ANYTHING Please
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My world has been turned upside down
by natty1976- 24 replies
- 16.8k views
I have been looking at this forum for eight weeks since my lovely mum was diagnosed with stage 4 pancreatic cancer. Eight weeks ago life was normal my mum was her usual active self but had a problem with food, she just felt sick all the time, cut a long story short and a private scan for suspected gallstones our world fell apart. The next day after the scan we had a phone call from the doctor to bring mum in and we were told it was terminal, we were shocked my mum is such a good person she doesn't smoke, drink or even swear how could this be happening. That's when I found this forum but I never had the guts to write anything I think it has taken me this long to accept wha…