Advanced pancreatic cancer
A forum for advanced pancreatic cancer issues.
398 topics in this forum
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Any advice will be greatly appreciated 1 2
by Levi1- 25 replies
- 32.5k views
Hello, My mums (54 years old) been diagnosed with this awful condition and would love any advice on the road ahead. I've spoken with a great lady 'Jeni' on the phone already and she gave me some great advice about sorting the creons out now before my mum loses anymore weight/strength etc. Which within 2 days now she feels much better eating which is great news-the GP was reluctant to give it this soon but after reading the emails that I took from Jeni he soon listened and prescribed them. So now it's the horrid wait for the first meeting with the consultant.... What we know so far is that it's inoperable as its around the celiac artery and Chemo has been mentioned…
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Dads case
by tintin1970- 5 replies
- 13.3k views
well as posted previously dad has myloe fibrosis(failed stem cell transplant 3 yrs ago) and now advanced pancreatic cancer with a tumour >6cm to body and tail told by the doctors at the beginning of September he only had a few months, he was offered Gemcitabine 3wk 1 off as palliative care, he is now on toward the end of his second cycle, he appears to be doing quite well at this point he blood counts seem fairly good for him, he seems to be coping well with the chemo complained last night of his stomach feel red hot and a burning sensation and redness to the hands is this typical I don't know, but apart from that he seems to be better now than he has been in a long t…
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Brother with inoperable pancreatic cancer 1 2
by Bryansie- 35 replies
- 38.4k views
Hi, I am sure my posting is like everyones on this forum. My brother told me he had a pain in his stomach 8 weeks ago and went to his DR's, he was sent away twice being told to take parecetamol,two weeks later he was rushed in to hospital with D.V.T on his right leg, the hospital did some tests and said they had found many small nodules in his stomach and a 3cm shadow on his liver, they could not do the biopsy on his liver for 3 days as they had given him warfarin. He had the biopsy and a week later they rang him with good news, it was not cancerous,sadly that was short lived as 2 days later he was taken back into hospital with D.V.T in his left leg, they could not unde…
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Nanoknife Ablation Doubles Survival in Pancreatic Cancer
by KickingtheCan- 0 replies
- 10.7k views
This is an article about a paper published in the Annals of Surgery in Sept 2015 for those with locally advanced PC: http://www.medscape.com/viewarticle/850367#vp_1 I thought I would draw attention to it. The trial was funded by a grant from the company that makes the machines but the results speak for themselves. Although there were a large percentage of complications (apparently one of the reasons why the NHS won't provide it for PC), most of us would take that for survival.
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Tumour size 1 2 3
by WilliamS- 64 replies
- 60.5k views
My father has recently been diagnosed with a 34mm x 28mm PC tumour which is described on his hospital discharge letter as "locally advanced". We haven't been given any information about staging or treatment. Does this mean the tumour is likely to be too advanced for surgery? He has been prescribed Creon 80,000 with meals and 40,000 with snacks but is unable to eat solid food. He is having soup and Ensure but has lost about 1 1/2 stone in 3 weeks. Any advice? How long have others waited before hearing about treatment? Any information appreciated as this is all new and out of the blue. He had no symptoms at all until being admitted to hospital with jaundice, then a …
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So frightened for my Dad 1 2
by kateeighty8- 31 replies
- 32.8k views
Hello all – since my Dad was diagnosed with Pancreatic cancer on 16th August, I have been reading a lot of the posts on this website, and have been both comforted and horrified by the heartfelt accounts of this terrible illness. Nine weeks ago, my parents were on holiday with us in Crete and my Dad appeared to be a fit and healthy 74 year old, playing volleyball in the pool with his grandchildren. Since then we have seen him deteriorate at an alarming rate, losing practically all his appetite, becoming extremely weak, and losing over four stones in weight. Today he cannot even stand up from his chair unaided and is in a wheelchair. The doctors originally thought …
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Dads case
by tintin1970- 2 replies
- 8.5k views
we had a real rollercoaster with dad. he is 68 three years ago he was diagnosed with myloe fibrosis and underwent a stem cell transplant which failed and has just been diagnosed with advanced pc inoperable as it is affecting the body and tail involving the spleen which is also enlarged due to the myloefibrosis , doctors are indicating he may only have a few months and are starting him on chemo Monday in the hope to buy some time for him. we are just hoping he can tolerate it, not sure how the pc will react with the mf would be interested to hear of anyone else is in the same position and chemo helped
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Sister has 4 months to live
by sonia57- 13 replies
- 16k views
Hello everyone , i don't do support groups but i'm not coping too well with the news that my kid sister (she's 51) has been told she only has 4 months left to live. That is bad but she was told the news while handcuffed to a prison officer. She hasn't threatened , hit or murdered anyone but made a stupid mistake before anyone judges her. Can you imagine what it must be like for her not knowing when she is going to the hospital, not having access to the internet to find out any information and only being able to see her family 3 times a month. Her pancreas has already packed up and she has insulin insulations every day, she is also having morphine twice a day with Oramorp…
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Gutted sister couldn't start her Chemo
by sonia57- 17 replies
- 20.7k views
My sister who is still in prison was due to start her chemo yesterday but was told that she couldn't have it as her blood and liver were all over the place and needs to be stablelised. Can someone please explain what this means as time is rapidly going by.
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shoulder pain
by linjo1977- 10 replies
- 19.5k views
I am new to this site and this is my first post. I was diagnosed with locally advanced pancreatic cancer 3 months ago and was told it was inoperable and the type of tumour was not suitable for chemo. I was given the prognosis of 9 to 15 months. I am on morphine and cyclizine. I also take metformin and creon. I have been ok with the exception of extreme pain in my left shoulder. My gp prescribed paracetamol and referred me to physio who thinks it's muscular and gave me exercises to do. I can get a full range of movement now but the pain hasn't changed at all. I can't get much sleep with it and I'm unable to sit in a chair for long. I just wondered if anyone else has this…
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Newly Identified Tumours One Year on from Whipple 1 2
by Amanda J- 42 replies
- 40.4k views
My husband was diagnosed with Pancreatic Cancer in June 2012 at the age of 34. I detailed our story in an earlier post in November last year. After two unsuccessful attempts at the Whipple in the UK he was deemed in-operable so we went to Heidelberg University Hospital in Germany who after 11 hours successfully removed the head of the Pancreas and Tumour (please see my story titled –Successful Surgery in Heidelberg Germany - inoperable in UK – under the Advanced Cancer index). After the surgery in Germany my husband was left with a Stoma which was successfully reversed in the UK on 14th January 2014. They did find something within the area that looked suspicious which…
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Nivolumab and ipilimumab
by Didge- 1 reply
- 9.1k views
I was alerted to this by a friend who had seen the article in the Sunday Express yesterday (you can find it online) and was amazed to see on the Cancer Research uk page that this trial is still open and taking patients with pancreatic cancer which has spread and who have had at least one type of chemo already. Might be worth checking out with your doctors if you think you might qualify.
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Mouth ulcers
by Didge- 15 replies
- 15.8k views
I have read advice before about what to do for chemo related mouth ulcers but it didn't apply to us then? Anyone? Also bf is schedled for targeted radiotherapy for his liver tumour. Never heard of that one either. anyone know anything about that?
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bri's progress 1 2 3 4
by laura- 93 replies
- 82.5k views
hi everyone, just to say that our visit to the specialist today was very positive, there has been NO changes shown on his scan of last week, so we have an appointment for three months time, preceded by a further scan , this is. of course the absolute best we could of hoped for and i am so relieved, but feel sort of strange, cant explain it.!! have sat reading on here for an hour,wanting to post, not quite knowing what to say, cos i feel so bad about all the sadness of others on here, please remember my thoughts are with each and every one of you. love laura xxx
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How much longer?
by Samelia- 18 replies
- 19.6k views
Hi everyone- this is my first post but have been reading previous posts for about 2 weeks now. Unfortunately my family and I were shocked at the news that my dad has advanced pancreatic cancer that has already spread to his liver. There were no treatments available as it was too progressed and aggressive. The drs in the hospital said they estimated he only had a few months to live: this was three weeks ago. Already my lovely dad has become bed ridden, weighs less than 7 stone, is hardly eating anything and his eyes are bright yellow. In the last few days we have been giving him oramorph as he said he was having some discomfort at night. He seems to be deteriorat…
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What should we expect next?
by Dandavie- 3 replies
- 9.3k views
My father-in-law was diagnosed with inoperable Stage 4 PC at the end of July 2014 with spread to his lungs. He had a biliary stent inserted within a few weeks of diagnosis and has been lucky with no major stent issues. He did start on Gemcitabine but only tolerated 1 cycle (3pulses) before making the decision to stop (Nov 2014) as it was flooring him and reducing any quality of life he had left. His appetite has never been good and has lost over 5 stone - he is on Creons! We have had a reasonably well 7 months with him and he has only been hospitalised once in this time with a diabetic hypo. The last few weeks though have been a bit of a struggle and he was hospita…
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Mums crushing pain
by KatieB- 3 replies
- 8.5k views
Hi, My mum was diagnosed with locally advanced pancreatic cancer one month ago and despite being offered Folfirinox she has rapidly deteriorated and being given end of life care in a hospice. In the last few days she has constantly complained of a crushing sensation, and has had full chest scans which are all clear and not showing blood clots etc the pain is directly associated with her tumour. The doctors are tweaking her meds but the constant crushing is really affecting her mood. I wondered if anyone else experienced these feelings and the best advice for them? She says it's not a pain but a discomfort that she feels as if she cannot breathe as its so much pressure.…
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Pancreas pain 1 2
by Didge- 29 replies
- 22.4k views
Ok, one for you old timers. We got the results of the CT and PET scans today. Increased tumours in liver (and tumour marker levels) but none showing anywhere else. However, he has extreme gnawing pain just under the breast bone (although not going through to back) and is now on morphine to dull it. Sounds familiar, right? I wonder if this is a case of the scans being behing the tumour activity as we have talked about before, but wondered if anyone else has had this type of familiar PC pain but without the tumours to match. He does not take creons, but I wouldn't imagine that not taking creans could cause pain - or am I wrong? he is going to try creons anyway. Oh a…
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my husband of 2 weeks with weeks to live 1 2 3
by scoobymandy- 74 replies
- 72k views
Hi I am new to this website but feel that my husband (of 2 weeks) has been poorly treated by our hospital. A brief guide to what has happened. My husband was complaining of a bad stomach last November he was fobbed off every time he went to the doctors, saying it was constipation. This carried on until Feb 2013 between then he had an ultrasound scan, x-rays, so on so forth, just saying blocked bowels and take laxatives and sent away. In February, he saw an emergency doctor who told him to go to our local hospital as they could hear no bowel movements he was given a BLOOD TEST as his amylase levels were to high he was in hospital for 5 days. Whist there, th…
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Looks like straight to palliative care
by hannie- 5 replies
- 9.4k views
After a meeting with a consultant at the hepatology where my mum is right now. Basically told he wouldn't recommend chemo as it would only extend life by 4 weeks. So to talk to palliative care and make plans. Saying this we still have a appointment with oncology but it wasn't today it's next week! Wish that the hospital wouldn't have been so slow with everything. I know it's probably because of the time of cancer but it seems so unfair on my mum! She has said she still wants to try chemo whatever.
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Finally off to Oncology
by hannie- 5 replies
- 8.7k views
After my mum found out she had pancreatic cancer on the 2nd January! The having a dvt in the back of her knee and then had biopsy on the 27th January! To then be rushed to hospital last Tuesday and now been in a ward for a week...haven't what's been wrong! Think I've been scared to ask well today I was upset my mum's side room a mess and be told gad a fall. So I was like why didn't I have a phone as I had previously. Me and nurse got rather defensive but after time calm she came back and I think she realised we didn't know what was happening! She kindly got a doctor to come speak to us which I appreciated. Even though that meant find that the liver biopsy c…
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FOLFIRINOX for patients over 75
by Faye- 3 replies
- 8.4k views
Hello Having read a number of posts, its great to see how positive everyone stays - despite it all! My mother has recently been diagnosed with stage IV pancreatic cancer (met in liver). We are meeting with the oncologist today. My mum really wants to go for FOLFIRINOX, but I am concerned about how hard this will hit her and whether she would be better off opting for Gem/Abraxane instead. The latter seems to have had some very positive results and wondered if it is still considered 'lesser' to FOLFIRINOX. I'm also concerned that if mum goes for FOLFIRINOX and it doesn't work out/she doesn't tolerate it, we will have blown our chance to try Gem/Abraxane. Sorry …
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Wilko fought this off! Never give up hope.
by yorkypaul- 6 replies
- 10.7k views
Never thought I would see the day! Hope is out there: http://www.bbc.co.uk/news/entertainment-arts-29727632 Thinking of you all xx
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Not long left I fear 1 2
by karen68- 26 replies
- 27.1k views
I have been reading the forum for several weeks and have gained lots of knowledge and insight into this awful cancer which is taking my lovely dad from us. Dad is 78 and was diagnosed with untreatable PC in May this year, and given just 2 - 3 months. Needless to say we are so happy that he is still with us. However, I feel that time is not on our side and in the pit of my stomach I know that the end is very near. He has suffered greatly from ascites, having 11 litres drained the first time a month ago and since then, back in for a 5 litre and 6 litre drain. The last time was this time last week when he also had an infection, spent 5 days in hospital being treated with a…
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so upset about my mum 1 2
by littlefairy- 33 replies
- 28k views
hi My mum was finally diagnosed with PC cancer a week ago after numerous visits to Drs who said nothing was wrong despite her being in agony and losing over 4 stone in weight. They have said it is terminal and non operational, we live over 300 miles away so I hadn't seen her for a while, we visited today and I was shocked at how awful she looked. Despite a morphine pump and oral morphine she is still in a lot of pain and is basically skin and bones, she didn't look like my mum anymore, she is so frightened and my dad is completely worn out as my disabled sister also lives with them. Macmillan nurses are visiting twice a day but the pain is waking her in the night an…