Advanced pancreatic cancer
385 topics in this forum
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Metastatic adenocarcinoma
by channers- 19 replies
- 37.8k views
Hi I am new to this forum and would like to get some advice on my husband's illness. Hi is 62 years old was diagnosed with secondary liver cancer in February. He had been gradually losing weight and had constant back ache. He is type 2 diabetic and we, and our GP, put this down to the diabetes. But in January my husband had he usual blood test, to check the level of blood sugars, and the results came back with an enzyme that should not have been there. The doctor said that this was indicative of liver disease and immediately asked how much alcohol he regularly drank, which was not a lot. She sent him for an ultrasound and it came back with secondary liver can…
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Molecular Profiling
by violetmia- 4 replies
- 15.6k views
Has anyone had tissue analysed for molecular profiling? This is being offered privately. It aims to diagnose the precise nature of your mutated cells, and show which biomarkers and enzymes they express. This can be matched to existing treatments to show a likelihood of good response. The question, I'm told, however, is whether the treatment can or will actually be prescribed. The drugs that 'match' may not have been tested on pancreatic cancer, and may not be liscenced for it. I wondered if anyone has any experience of this?
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Gem-Abraxane as second-line therapy
by violetmia- 0 replies
- 10.1k views
We have just been told that Abraxane is not funded by the NHS if the patient has already had FOLFIRINOX. Has anyone had Abraxane on the NHS after having had FOLFIRINOX first?
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dark grey vomit
by jss- 1 reply
- 12.2k views
My mum was diagnosed with stage 4 pc in December, no chemo, only natural supplements, and has been well up until the last few weeks, although very, very thin and tired. She started experiencing debilitating nausea a few weeks ago and has spent the last 2 days in bed, and vomiting dark grey liquid (not eaten in 2 days). During this time she is taking 6mg a day of a new drug prescribed to help, don't have it in front of me but its used for schizophrenia. She is worse and I'm wanting some guidance on if this sounds like we are at end stage, or if it could be a drug side effect? I am on holiday at the moment so I'm getting info second hand from other family members, but want …
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Constant burping
by Mymum68- 8 replies
- 27k views
Hi all, on November 29th my mum received stent (due to bile duct blockage - she turned yellow). She arrived home already the next day, but she has problem with constant burping. She avoids eating as she burps constantly and it is very uncomfortable for her. She takes omeprazol but t does not seem to help. Anyone has similar experience and suggestion how to alleviate it? My mum only received stent in bile duct, did anyone receive it also in duodenum? My mum's tumour is in the head and from what I read it is not uncommon for stent to be inserted in dudenum in this case. I wonder what can be done, for her not to suffer. I will speak to her doctor again, but the genera…
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Experiences without treatment
by Anthony Smith- 4 replies
- 16.9k views
I was diagnosed 7 weeks ago with a stage 4 pancreatic cancer with mets to lungs and lymph nodes. I have decided against treatment as my health is generally good and I didn't want to be hampered by the side effects of chemotherapy if I only have a few months left to live. In those 7 weeks I have been full on enjoying life. Traveling, partying and generally having a good time. My point is that I still feel the same. I get a little tired sometimes, particularly after a round of golf, but I have no other issues or symptoms. I had a stent fitted at the time of diagnosis which cleared up the jaundicd , but that's the only treatment I've had. Has anyone else taken this ap…
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Awaiting diagnosis
by SMJ- 7 replies
- 19.7k views
I've suffered with health anxiety for years always worried I have something wrong with me & with numerous visits to the doctors/a&e I've always been fine until last week....... For about 7 weeks I have been having upper stomach pains I went to my gp who advised it was ibs, pain continued went back doctors who advised gastritis. Anyone one day the pain was unbarable so I went a&e & I was admitted to hospital. They did lots of tests & my bloods came back that I had high levels of amylase so they said it's pancreatitis (inflammation of the pancreas) I went for an ultrasound which came back fine so they sent me for MCRP (MRI) to see if I had any gall…
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Any advice appreciated
by nick415- 6 replies
- 17.8k views
Hi everyone. I've joined this forum as my dad has just been diagnosed with PC - he's in his mid 70s. I thought it maybe useful to share some of the issues involved, and hopefully pick up any bits of advice or tips that may come in useful. The whole thing started a matter of weeks ago when he experienced shortness of breath when half running to catch the bus. He went to see his GP who took an x-ray of his chest, they identified that some excess fluid had built up on or near one of his lungs. He was then given a date of approx two weeks later to attend a CT scan, his GP didn't seem massively concerned as there were no other symptoms and blood tests were ok. A couple of d…
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Stent not helping with jaundice?
by ch42- 6 replies
- 17.4k views
My mum had a stent put in her bile duct 7 days ago and is still so yellow. Is this normal? She feels sick and shakey all the time and we'd really hoped the stent would help with this. She had a stent put in her bile duct and a temporary one in her pancreatic duct. She seemed to perk up for a day or so after having it and even started eating small meals again, then started to go down hill, the PD one was removed, and she's felt awful since. They've done an ultrasound and are happy that the remaining stent is functioning. Is there anything can be done to help her symptoms? They won't consider starting her on chemo until her bilirubin is lower, last check it was 250!
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Help..I don't know what I don't know!
by Mollypawpaw- 6 replies
- 17.5k views
My mumma has just been diagnosed with advanced pancreatic cancer. T4 N1 M0 Stage 3 She has had CT scan and in Lymph nodes and local blood vessels. she has fluid in the tummy cavity which is another indicator it's advanced. We have a biopsy and oncologist appointment. We have been told Chemotherapy and she is fit to go for 4 strain? We have been told months to live? Do people live longer? This all happened today, it's a bit dream like as my mum is so well and normal. Reading through threads I am overwhelmed to be honest! Do I need to research a clinical trial? Who do I ask? Should I seek a second opinion? All I can think of is can I take her on holi…
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So...we've just got back from holidays...I wish we'd not gone. Before we went my husband had had oral thrush and was feeling generally unwell from that...we thought he'd pick up once he'd finished the tablets, but he didn't. Throughout the 2 weeks, he gradually ate less and less and slept less and less. We got home yesterday and he was in so much discomfort in his stomach and back (following his whipples he's had a large abdominal hernia, we thought it might be something to do with that) that I took him to A&E. Turns out he's got a small amount of fluid around his abdomen. Reading up on this, it seems to suggest disease progression to either the peritoneal cavi…
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aphthous ulcer
by kate- 9 replies
- 20.1k views
Hi to all, My father is 70 years old and is almost seven months struggling with PC stage IV.Recently there are a dozens of aphthous ulcer in his mouth and he can't eat anything for a week. Have anyone else face this issue before? any useful treatment for this? Any help would be much appreciated.Thanx.
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Travel Insurance
by peter2901- 4 replies
- 17.5k views
Hi - We are wanting to travel as a family to Greece for a well deserved holiday for my brother who has advanced pancreatic cancer. I have looked at the Cancer Research UK website and contacted a couple of insurance companies for a quote. It looks like its likely to cost more than a thousand pounds to insure my brother for 1 week (if they will insure him at all)! Has anyone used any particular company who may be cheaper? Any ideas please?
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My Mum - stage IV 1 2
by Mymum68- 49 replies
- 72k views
Hi all, I'm new to the site, that no one would ever want to join. My mum was diagnosed with pancreatic cancer end March 2016. CT did not show any disease progression, so surgery was scheduled. Unfortunatelly during the surgery mets were discovered and surgery was stopped. As of end May she has been first on Gemcetabin alone, and as of end July abraxane was added. I should add that we do not live in UK (I saw some posts about insurance issues with abraxane in UK). Here oncologist believed that Folfirinox would be too toxic for my mum (68 at time of diagnosis, just turned 69). For the piece I would be happy to try out Folfirinox, as the only remission posts I have…
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Pain relief
by Deirdes- 9 replies
- 20.2k views
Brother in law age 47 newly diagnosed with pc that has spread to liver and lung. Absolutely devasted. He is very nervous about starting chemo but is currently in constant pain despite slow release zomorph 80ml morn and night and oromorph 70ml hourly. Drugs just changed to oxymoron 10ml as and when. We are hoping that this helps pain? He is also on gregabolin 100ml twice daily . Chemo is folfirinox. We just hope and pray this will ease pain and he will start having a better quality of life . This really is torture for all
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My beautiful Mum
by Sjo2007- 7 replies
- 18.9k views
Hi , Im pretty new here, I Joined a while ago, when my mum was diagnosed, but it's taken a long time to pluck the courage to read any of the threads and even more to write my own, so here goes My Mum, 73, woke up in March this year just burping! ( like drunken man!!) She's done it ever since, every second of every minute, she cannot control it, so knew something was wrong, they diagnosed diabetes, and then in June diagnosed early stages of Pancreatic Cancer, they said it was in the head of the pancreas, but was inoperable because it was too close to the arteries, she had 1 dose of chemo and had a horrific allergic reaction, so that had to stop, and was then told that t…
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Weight loss
by Daisydog- 14 replies
- 25.4k views
My wife was diagnosed with PC in july but it took 3 biopsies to confirm the worst news ever, my wife was a healthy 8 stone 4lbs when she was diagnosed 4 months later and only 2 courses of folfirinox her weight has dropped to 6 stone 11lbs, at her last consultant appointment the Dr wasn't too concerned by her weight loss, she has stage 3 t4 pancreatic cancer which is inoperable and has spread locally to her stomach and some veins, any advice would be great fully received
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Brown vomiting
by Mymum68- 8 replies
- 29.4k views
So my mum has not been well last week or 10 days. After doing great from May on, things I'm affraid started to take a turn. She developed jaundice and bile duct stent was inserted. After comming home she has troubles with feeling full and constant burping. Due to that she started to eat much less. In fact she has something small for breakfast and small lunch. Than in the afternoon constant burping and she only finds some relief after she vomits. She says that she only vomits liquid and that it is of brownish colour. I'm going to tak to her GP again tomorrow, but would like to check if anyone has experience to share? I'm soo affraid that this is the start od the end.
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Dad Advanced T4N1 help?
by staceystarr- 17 replies
- 32.1k views
Hi everyone. After being in pain for 11 months the hospital finally did a CT scan for my dad. We got told on Friday 25th Nov 2016 my dad has inoperable stage 4 pancreatic cancer . . We are now waiting 2 weeks for a biopsy and a further 2 weeks for an oncologist. Is it worth finding a private oncologist or use the NHS one? It's looking chemo won't even start till end of December. This I feel is a long time to wait with little time on our hands. Has anyone gone down private route and if so who did you contact and where do I start. I looked at the nanoknife however they need notes from the NHS and I'm unsure how I go about getting these sent over to them and will it…
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Struggling with it all 1 2 3
by Judith16- 59 replies
- 81.9k views
I pop on this forum quite a lot and today, with tears rolling down my face it seems it is time to share my husbands journey with you all. Just two weeks before Christmas 2015 my husband was diagnosed with Stage 4 PC at the age of 54. To say we were shocked stunned, is a bit of an understatement. As you can imagine we went through disbelief, shock. Having to tell our children, 28, 30 and 25 plus his parents and other family members was pretty traumatic. Having done that we got on with enjoying Christmas, a big one as we did not know whether he would make another one and we still don't know!! 31st January 2016 he started Gem/Abrax, which he tolerated pretty well u…
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Hello all I am new to the place where no-one wants to be but I am very much looking forward to chatting to you all and hopefully benefiting from your experiences. In the meantime, I just wanted to share my husband's Pancreatic Cancer story with you which started back in March 2015, to give a little hope to those who may just have been diagnosed. I myself have my own healthcare problems; I was "the ill one" and my husband was ferrying me backwards and forwards to various different hospital appointments whilst trying to get a diagnosis. I'd noticed that my husband was taking more and more painkillers,( this is someone who was very anti taking medication) complain…
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My Mum, My World, Stage 4 PC
by Julie1982- 16 replies
- 33.8k views
Nearly 3 weeks ago we received the devastating news that my beautiful mum has inoperative PC. Our world is shattered, I started googling lots then I came across this site, I though it may be helpful to share how I'm feeling and mums storey. Mum is 58, was fit and healthy and never ill, she experienced a couple of bouts of upset stomach and decided to go to the dr as it was very unusual for her. They run full bloods and said that her red blood cells were very high, they did a re run and they came back the same. That afternoon mum had a call from the hospital asking her to go in for a Ultra sound scan the next day. Mum had started to show signs of jaundice, in partic…
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New Chemo regime for PC?
by Proud Wife- 13 replies
- 24.4k views
I will update my hubby's story when I get a chance but he had a visit from his oncologist this morning before being discharged from hospital. Folfirinox worked well for him. We are not impressed with Gem/Abraxane, don't know if it was responsible for his sudden deterioration but we don't think it's working. Oncologist has suggested one further treatment to see how he goes but I'm afraid it could cause further problems. Oncologist suggested Liposomal Irinotecan, see link which I've found. I have such brain fuzz at the moment I'm not really up to researching and when I do, nothing sinks in. Has anyone heard of this regmine and if so, what do you know? Thank y…
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Constipation / nausea
by Zulu- 10 replies
- 17.3k views
Apologies for the long post and also if I have gone into too much detail that is not appropriate for the forum. I am posting on behalf of my mother who has delegated most of the responsibility for medical information and decision taking to myself and my siblings. It’s a big responsibility and I’ve had such help from the nurses at PCUK but I did not actually realise there was a forum here so I am venturing on for the first time. Mum was admitted to hospital on May 9th with an intestinal obstruction and diagnosed with PC that has spread to her liver and lungs. The obstruction was as a result of a tumour on her pancreas blocking her duodenum and on June 3rd mum had a…
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How much time?
by louisej- 15 replies
- 26.3k views
I am new to the forum and after nursing my own mother with stage 4 cancer I am aware of the fact that knowledge is quite often power. I am now in a situation where my mother in law (who i care for so much) has just been tole she has stage 4 Pancreatic cancer with no option of an operation due it also being in the liver. I want to support my other half as best i can but feel unequipped to do this as I very little knowledge of this type of cancer. The first doctor (a surgeon as opposed to an oncologist) has mentioned a time of 8 -12 months but i do wonder if this is optimistic. I would rather know the truth so i can prepare. They have suggested chemo and although I know …
