Family, friends and carers
A forum for family, friends and carers' of pancreatic cancer patients.
654 topics in this forum
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- 5 replies
- 17.4k views
Hello List, I have been thinking about the way my husband spaces out his Creon tablets. One 40,000 just before eating and the remaining two or three tablets (depending on what he's eating) during the meal. He has still been having problems with bloating and/or sickness/diarrhoea once or twice a week. I was wondering whether it is because it is quite hard to judge exactly what dose should go with particular food, especially as his portions are now getting larger. If he begins to feel bloated after eating, do forum members think it would be OK to take another Creon at that point, possibly with a mouthful of food to help it through? Or is it already too late once the b…
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My husbands pancreatic cancer situation 1 2 3
by sooty- 67 replies
- 79.3k views
Hi, I have been reading posts on this forum for a few weeks now, and have decided to tell our story in the hope that someone can guide us. In Sept 2011 my husband was a fit healthy man, he was given a routine blood test to check if he had suffered any ill effects of being poisened due to his work. The tests were clear but my husband was tired and felt a little unwell. Two weeks later he had another blood test, this showed his bilirubin had risen from 35 to 644 ! he was also showing signs of jaundice.Ten days later he was referred to a specialist for a stent to be fitted in the bile duct.A blockage made this impossible so the stent was inserted via his rib cage.A scan show…
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My thoughts on this miserable thing
by InfoForMum- 3 replies
- 4.9k views
One outlet for me is writing. Thought I'd share. No feedback asked for or needed. 7 weeks 3 days and 4 hours. Less than 2 months and life has been redesigned around me. Mother now patient, child now carer, friends helped now friends helping, hospital now home. Every day the probabilities evolve and normality changes. Prognoses masking people behind the portion of each percent. Each day at a time. Each life sucking, drawn out, cancer filled day. Fighting to climb out of the miasma of everything to do with the disease, desperate to see glimpses of an old reality around it. How do you deal with something this outrageously huge and unfair? You do. You d…
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Itch same or worse after stent - Why?!
by InfoForMum- 13 replies
- 20.1k views
Posting for my Mum with very immediate question. Biliary stent op yesterday 6 pm. Very harsh jaundice before with un-sleepable-with itch for last week. Bilirubin levels had doubled in week prior to that. Last count was over 300 (don't know how bad that is!?) Consultant said Op was a success. Pee looked lighter by morning. According to Mum, consultant was disappointed itch hadn't improved at all by morning. Didn't improve thru day and got a call at 8pm saying she'd woken up "burning" with itch. Reportedly worse than before. Twigged she didn't have a thermometer (I know - crazy, but until 5 weeks ago she was fit as a horse and had never had need of one!). Shot ro…
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moms diagnosis
by marie souter- 4 replies
- 5.5k views
Mom was diagnosed with pancreatic cancer stage 4 spread to the lungs in April of this year.. Pain is localised in the upper abdomen but the last 2 weeks she has had several horrendous vomiting spells with severe nausea. She has a syringe driver which delivered cyclizine anti nausea (useless) and injections of Haliperidol (also useless. FINALLY, after those two weeks the Macmillan nurse came and kicked up. Now shes on a different anti nausea drug WHICH WORKS and morphine 40mg through the driver (not quite enough as she still takes oromorph and has morphine injections on top. Docs think there is inflammation somewhere. Have also to inject an anti colic drug along with…
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Pancreatic cancer hereditary ?
by Mistipop- 13 replies
- 14.5k views
Hi, well I've not logged on here since my mum sadly died March 2012 but have felt the need to come back tonight. Although I cannot bring myself to read my old posts I have read a few recent ones and it amazes me how very similar peoples stories are and my heart goes out to each and every one of you going through this hell at the moment. My friend, who is in her 50's, has just been diagnosed with PC and it has brought everything flooding back...not that it was very far away. My question is can PC be hereditary? Her Dr says no but I have read that if at least 1 close member of your family has had it you are more at risk and tests can be done. After my mum died I mentioned…
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My dad and this horrible disease
by MisterM- 6 replies
- 6.3k views
Hi to all, I have been reading the forum since my dad was diagnosed in February 2013, but not posted before. The forum and the support team have been really helpful for me during this terrible time. Sadly, my dad passed away on 26 August, aged 58. His story is similar to so many others on this forum: a total roller-coaster ride. The common themes seem to be uncertainty and a mixed response from health professionals, pain, pain and more pain coupled with on-going tiredness and eating/digestion difficulties. I don't think he fully reported the pain during the whole period, it was never fully sorted-out, and his digestion was never really dealt with either. I ho…
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Travel Insurance
by Bee- 3 replies
- 4.2k views
Hi everyone, Just in case anyone is planning a winter break thought I would post this info. We have just returned from two weeks in Europe and due to the outrageous quotes for insurance, ranging from £800 to £3000 and also refused by some companies, we were planning to go and just get a flight home or take the risk as necessary, thinking we would rather pay hundreds if we needed to than pay out just in case. All of the companies we contacted were in the Macmillan booklet but it was still no use. However at the last minute I contacted Insurance With also in the Macmillan book. Quoted just under £50!! If we had to claim for a PC reason we would have had an excess of …
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my dad, no appetite dizzy and wobbly
by stanley- 9 replies
- 10.3k views
this is likely to be jumbled and all over the place but hopefully some reassurance or advice may filter through. my dad 86 years old last month diagnosed with pancreatic cancer can't operate and not up to chemo. we are just looking after him. mum is carer and struggling emotionally. i live close but work and find it difficult when i speak to my mum to work out what is happening and when... saw my dad last night, hardly eaten a thing, try to say have fortisip drinks if you can't eat, only prescribe 12 at a time so i think my mum may be rationing them out - i would give them to him all day if it helped and i would buy them if they won't prescribe more - is there a restric…
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Nanoknife and stents
by karen17- 7 replies
- 7.1k views
Does anyone know whether Nanoknife is able to be performed when a metal stent is in place? I'm sure I've read somewhere it is not compatible and need to be sure before Bob has insertion of stent this week in case we need to enquire whether we could have a plastic stent. Any information would be appreciated Karen
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Best day so far
by Jwilson- 16 replies
- 11.4k views
I just want to say to anyone who is worrying about starting chemo......in our experience it is working well. Bill is much more interested in food and eating better than he has done in months. The pain is under control and he is feeling SO much better after three weeks. Side effect......extreme tiredness but hey we can deal with that. We have sofas and beds in our house! His aim is to put on a stone. He has lost over three so he looks like a recently freed prisoner of war all bone and skin. He may make nine stone some day soon. Seriously don't panic about chemo, it works! June
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Gem/cap
by Jwilson- 17 replies
- 13.7k views
Have I got the name of this chemo correct? Bill now on his third week of it. One IV drip on Wednesdays and 7 tablets each day. Three weeks on and one off basis. Does anyone know anything about it? It seems to agree with Bill ok so far, apart from extreme tiredness. He isn't sick or anything but we have been told it kind of builds up as time goes on. This week though he took a clot in his leg so has to give himself an injection every day for six weeks. I have a feeling the chemo is starting to help. He is eating a bit more and eating a greater variety of foods. Things with more taste etc instead of living on digestive biscuits and yoghurt. So......bloods done th…
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A bit of a shock - a good one
by Catherine- 2 replies
- 4.2k views
Hello everyone I haven't posted on here for ages, we've had a tottering time with mum and her stent. But I have been following everyone's stories and wishing you well. Anyway I thought I'd share my mums progress with you all. My mum was diagnosed with PC in October of last year. She started chemo in January (gemcitabine and cisplatin) and had 8 sessions. The post chemo scan showed 'stable disease' and she went on to have 28 sessions of radiotherapy combined with capcetabine from May onwards. Her treatment was slightly delayed due to sepsis from her stent being blocked. To say she sailed through treatment is an understatement. She finished treatment and was doing am…
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What can I feed my mum?
by pol61- 3 replies
- 4.6k views
Hi all, I was wondering if anyone had any advice about meals for a pancreatic cancer patient. My mum was diagnosed a couple of months ago, and after an unsuccessful attempt at a Whipple she has now bravely decided not to have any more treatment. She is doing well, and not in any pain, but she has terrible trouble digesting her food, and I want to make her meals that are light and easy on her tummy. Does anyone have any advice? Thanks in advance x
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could a shadow on the pancreas be something else
by carolelisabeth- 3 replies
- 14.3k views
Thanks Cathy, think I've got it now. I suppose its just a waiting game at the moment. This is early days for us, we are being referred to a specialist in August, after something showed up on my husbands ultra scan, and I'm wondering if it could be something other than pancreatic cancer? He has had very little symptons, just a pain in his stomach about a week ago and in his side, which he put down to kidney stones (he has suffered with them before). He is 65 very fit and active. But i must admit I'm fearing the worst.
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Inform and empower patients, their friends and families
by federico_72- 0 replies
- 3.5k views
ecancerpatient.org provides information for patients to use while discussing treatment options with their doctor. There are videos of cancer specialists talking about the most recent advances in care which are designed to empower patients to become more involved in vital treatment decisions. Find us on Facebook (https://www.facebook.com/ecancerpatients) and Twitter ( ).
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scared
by sammyjo- 6 replies
- 6.2k views
Hi I have never written on a website like this before so thought I would give it a go and see if I can learn anything or find peace, maybe just get stuff off my chest? My dear uncle was diagnosed with advanced in-operable pancreatic cancer 8 weeks ago, and it had already spread to his liver. 2 other uncles, Grandma and Granddad (Uncle H's brothers and parents) both died of pancreatic cancer. He is tired a lot of the time, having to sleep a lot. He is in a fair amount of pain, and his skin is a yellowy grey colour. It is hard to digest, as my uncle has never been poorly...in fact I don't even recall seeing him so much as sniffle with a cold! Uncle H has decided to…
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Information needed
by kwaitang- 17 replies
- 11k views
My husband has recently been diagnosed with inoperable pancreatic cancer that has spread to the lymph nodes. He has been told that most people in his position only live for 1 year without treatment. We seem to be wasting valuable weeks between each appointment to see various specialists and have now got an appointment with an Oncologist. 52 weeks - and we have wasted about 7 of those waiting. He was given a big bag of tablets when he left the hospital, some to stop acid, some anti histamine,(does he continue with these even though the symptoms have gone following a stent being put in?) Colestryamine powder - what is this for? and 2 lots of pain killers, paractamol and Tr…
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We have had a dreadful time over the past few days with pain. Bill was on 15 mg night and morning of OxyContin with oxynorm for breakthrough pain. Suddenly he was experiencing horrific pain at night. Had to call the out of hours to come and basically knock him out.....three times! Meds up now to 30 mg twice a day and that appears to be hitting the spot. We have been told this is still a low dose so not so worried. You don't know these things until someone has cancer do you? Appetite gone now and he can't be bothered with food. Anyone else have the shocking pain thing? So hard to watch. The docs were great though and here in no time. June
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A Yabadabado Celebration!
by karen17- 20 replies
- 13.7k views
Well today we went for Bob's MRI results and I'm delighted to say it was good news. Following 12 cycles of folfiranox the results are a significant reduction again in the pancreas with the liver mets now reduced from 14 to 2 small ones! No spread to any other organs, bones or lymph nodes. The oncologist has finally agreed to refer for a surgical opinion both within our hospital and to approach another PCT of our choice. Also still considering Nanoknife. He says Bob is doing incredibly well. His only problem is the tingling and numbness in hands and feet which seem to be getting worse ( very dodgy driving!!! ) and when he lowers his head he gets like an electric shock down…
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Help on pain control
by Lem- 10 replies
- 10.3k views
My Dad was diagnosed about 6 months ago and is now rapidly going downhill. The main problem is controlling the pain. He's on 120mg Morphine slow release tablets every 12 hours and topping this up with liquid morphine (oramorph?) as required. Night time is the problem though where he gets attacks of pain that reduce him to tears and leave him groaning in agony. We've had to call out paramedics to ease the pain - but if they give IV morphine, which acts almost immediately, they then have to admit him to hospital and Dad does not want to go into hospital. And from his last experience, we also don't want him in hospital either! The doctor had suggested trying steroids to eas…
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Confused and don't want to give up hope
by Willow- 6 replies
- 5.8k views
In February my wonderful Mum was admitted to hospital with jaundice caused by gallstones but after nearly three weeks and a transfer to a specialist hospital our worst fears were confirmed and she was diagnosed with pancreatic cancer. Since that time she has had an endoscopy with a stent placement, two blood transfusions, and worst of all an aborted Whipple procedure as cancer spots were found on the liver. Chemotherapy was due to start one month after the failed operation but when Mum went for her appointment with the oncologist he effectively said there was no point in having chemo as it would only help to relieve the symptoms of the cancer and not prolong her li…
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He made it!
by Jwilson- 9 replies
- 8.5k views
Bill, my husband who has inoperable PC, diagnosed in April, made it to our daughter's wedding on July 6th. The whole day was fantastic, the pain was under control and all that he needed to do was go and have a lie down for an hour now and again. We had a really fabulous weekend and he made a great speech. Apart from the weight loss you could have been fooled into thinking he was in robust health. We have brilliant support from a hospice team. They got the pain sorted out just in time. Now he takes 60mg OxyContin morning and night and 20mg oxynorm for breakthrough pain. Those girls are terrific and the GP's seem to take their advice when it comes to pain relief. An…
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- 5 replies
- 5.3k views
Hello All I am new to this site. My darling Dad was diagnosed with PC in July 4 years ago, and after going through 9 rounds of chemo, we lost him on 13 August 2010. It took a long time, but while we still miss him every day, we are all over the worst of the grief. However, day before yesterday we got a call from my Dad's younger brother to tell us that the eldest brother (living in California) has been diagnosed with metastic(??) PC which has spread to his stomach and elsewhere. he will be starting chemo in 2 weeks, and next week is having a device implanted which will give him all his meds directly into his veins, with top ups weekly. This news, needless to say, h…
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Do I ask?
by xanie- 2 replies
- 4.1k views
Hi, My mum has just been diagnosed with Pancreatic cancer, she was admitted to hospital after developing jaundice, sickness, she had an ERCP done and then discharged home. My Mum had a keyworker who we never met and I certainly never spoke to. I also never spoke to her consultant either. My mum is 80 and my father is 82 I am an only child, I live an hour away and have been supporting them as much as possible between work and my family. She has just ben told by phone that she can be operated on at a hospital, but I feel totally at sea! I feel really unhappy at not really knowing what is going on? My mum just accepts what she is told and agrees with everything but she is so…