Advanced pancreatic cancer
A forum for advanced pancreatic cancer issues.
399 topics in this forum
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Disapointed
by Theresa Upton- 6 replies
- 14.9k views
So we waited for 2 1/2 hours today to be told that they could not give me the results of the scan I had on Saturday. I knew that the scan would not have been reported on by today but I was told that all the images would be on my file and the oncologist would be able to tell me something...……….nope, she said that she was not qualified to read scans...…….she wasn't prepared to pull up the images from my scan in October and compare them with the images from the scan on Saturday. Things got slightly heated when I was told that results cannot be given over the telephone so I may have to wait another 2 weeks. My oncologist has been off sick since November and I have seen 4 diff…
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positive thoughts
by Theresa Upton- 3 replies
- 11k views
Hi, as some of you are aware I was diagnosed with PC and liver Mets in Oct 2018. I have just completed 6 rounds of folfirinox and the results of my midway scan will be discussed with me at a meeting with my oncologist tomorrow. I find that the chemotherapy is tough going and the side affects, although horrible, are manageable. Over Christmas I had a chemo break of one month and I was so well and so full of energy it was great and to a degree my levels of energy have remained good. I am walking every day and today I played golf for the first time since becoming unwell in August 2018, my game is still c--p but I managed to play 9 holes quite comfortably and I am hoping that…
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My big brother
by BromsgroveSister- 22 replies
- 29.7k views
Hello, On Nov 7th my big brother was given the news that he has Stage 4 pancreatic cancer with liver mets. This was following a couple of months of “stomach bug” symptoms and some weight loss. My brother is 54. This has come as a huge shock to all of our family. He is due to confirm his chemo regimen next week after being* offered Folfinox or Gem/ Abraxane. The last few weeks has been a rollercoaster of emotions with everyone desperately trying to find out information on best foods, chemo options etc, but in the last week my brother’s emotional health has become really depressive. He’s not been eating much anyway but recently it feels like he is giving up. Has anyon…
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Just diagnosed PC with spread to the brain
by Paddys sister- 3 replies
- 13.2k views
My brother (age 49) has recently been diagnosed with pancreatic cancer which has spread to his brain. He doesn’t drink or smoke and was previously fit/healthy. Our Mum also died of pancreatic cancer (age 56). Can’t believe this horrible disease has hit our family again. Paddy is having radiotherapy (brain/spine) which will be followed by chemotherapy. Would be good to hear from other members with similar experience. His oncologist has never come across this in 10 years and I can find very little information.
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Diagnosed too late for treatment
by kimmac- 17 replies
- 35.9k views
Hi All this is my first post. My husband was diagnosed with a 5 cm cancerous tumour on the head of his pancreas in April. The tumour was not operable due to size and location as was sitting on major blood vessels. By his 2nd oncologist appointment in May he had already deteriorated noticeably, had developed jaundice and the tumour had more than doubled in size as well as spread to his lymph glands. He was told that he was too weak for chemo and was then referred to have a stent put in to ease his liver however ended up in hospital for 3 weeks after as he developed an infection which turned to sepsis. He is also anemic, has had 2 blood transfusions and an iron transfusion …
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THE HIDDEN ENEMY
by jennifer- 9 replies
- 22.7k views
On Feb 1 2018 G celebrated his 71 st birthday .We visited York ,had a lovely lunch at a super 'designer chef' restaurant where I gave G his birthday present (a steam train day in May on the Settle to Carlisle line) In the evening G went to the Rugby Club where he has been 1st team manager for the last 25 years and enjoyed his birthday greetings from 'the boys' It had been a lovely day . On the following Saturday G packed his Rugby bag as usual and set off for the game .Unusually he returned earlier than usual ,very tired and with a red rash on his upper torso . The next day, Sunday ,G (a Church Reader)was preaching but instead of staying for coffee after the service we …
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- 7 replies
- 19.1k views
Hi, Unfortunately I find myself here due to my mum being diagnosed with advanced PC 2 days ago - the tumour is in the main body of the pancreas and has unfortunately already spread to the liver meaning only palliative care is going to be offered. My mum is only 61 and has been in good health. She had thyroid cancer 5 years ago but after a full thyroidectomy and radiation treatment she has been all clear since. A few weeks ago she had a bout of severe abdominal pain which her GP gave her antibiotics for as a suspected infection and took blood for testing. She has had no further symptoms since. Following the blood results she was sent for x-rays and that's when someth…
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THE HIDDEN ENEMY
by jennifer- 0 replies
- 10.9k views
On Feb 1 2018 G celebrated his 71 st birthday .We visited York ,had a lovely lunch at a super 'designer chef' restaurant where I gave G his birthday present (a steam train day in May on the Settle to Carlisle line) In the evening G went to the Rugby Club where he has been 1st team manager for the last 25 years and enjoyed his birthday greetings from 'the boys' It had been a lovely day . On the following Saturday G packed his Rugby bag as usual and set off for the game .Unusually he returned earlier than usual ,very tired and with a red rash on his upper torso . The next day, Sunday ,G (a Church Reader)was preaching but instead of staying for coffee after the service we …
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THE HIDDEN ENEMY
by jennifer- 0 replies
- 10.4k views
On Feb 1 2018 G celebrated his 71 st birthday .We visited York ,had a lovely lunch at a super 'designer chef' restaurant where I gave G his birthday present (a steam train day in May on the Settle to Carlisle line) In the evening G went to the Rugby Club where he has been 1st team manager for the last 25 years and enjoyed his birthday greetings from 'the boys' It had been a lovely day . On the following Saturday G packed his Rugby bag as usual and set off for the game .Unusually he returned earlier than usual ,very tired and with a red rash on his upper torso . The next day, Sunday ,G (a Church Reader)was preaching but instead of staying for coffee after the service we …
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Pancreatic Cancer Timeline - 2018
by Hyperfocus- 3 replies
- 17.2k views
Hi all I've just joined here to outline my dad's 4 week diagnosis to the end timeline. Hopefully it will benefit others in some way as preparation. Dads PC journey Age 62 Late Jan 2018 - complaints of pains in abdominal area. Go to A and E who checked and confirm it is hernia. Feb 2018 - complaints of pain in lower back and abdominal area. Dark urine present. Slightly yellow skin and eyes. Go to GP. Does 2 blood tests to confirm Type 2 diabetes. Prescribed diabetes medication. No referral to hospital/specialist. 2/3/18 - Surrounding people notice distinct yellow skin and eyes. Complaints of severe unbearable back pains in the night. 3/3/18 - walk into…
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- 2 replies
- 13.3k views
Totally in shock after this diagnosis. My mum is well at the moment, had no symptoms apart from DVT. It is such a shock for the whole family. My gran (her mum) is 86 so this was completely unexpected as my mum is only 66. Due to see oncologist at end of week. Can anyone recommend chemo regimes they have found successful? And best way to deal with side effects? Is this normal that the only sign she's had is a DVT?? Feel absolutely heartbroken as she has never smoked, drunk (occasional glass of wine at Christmas time)
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Don't know what to do next
by Rjohns- 1 reply
- 13.1k views
Hi I am 53 yr old female with a history over past year of disturbed bowel some dizziness ..nausea and vomiting on sitting up from bed for around 2 months last Feb 17. Over year had endoscopy colonoscopy cystoscopy ct head scan...all normal including blood tests. Recent bloods were 'satisfactory apart from glucose which is raised and to be redone next week. Over last month have itchy face dark yellow urine occasionally and on one occasion pain in mid back and in both rib cages. One occasion of discomfort at sternum. Petrified I asked for private ct scan with contrast. Just heard results show all is fine and no action needed. However I have lost 4.5 kilos since 31 Ja…
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- 7 replies
- 21.6k views
Hello, I have no idea how it's taken me this long to get myself here in a position to actually sit down and ask for help. I've seen an incredible decline in my otherwise strong dad over the last two weeks and I'm just crippled with fear that we may have reached the stage now where we may not come back from this. I'm not sure what I'm hoping will come from this, answers? reassurance? or just some kind of relief at getting it off my chest? Either way if anyone gets to the end in reading this then 1. thank you incredibly for listening to my story and 2. I am so sorry for being the worlds biggest rambler! My 68 year old dad was diagnosed with stage 4 pancreatic can…
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Lansoprazole with Creon
by Matt Sawyer- 3 replies
- 17.6k views
Hi all, I’m interested to hear of all experiences in using Lansoprazole. I have received conflicting advice, that I both do and do not need to take Lansoprazole to increase efficacy of Creon. Lansoprazole can have side effects, some of which I have, so I am keen to only take if absolutely necessary. Any feedback/tips gratefully received. Kind regards, Matt
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Metastatic adenocarcinoma
by channers- 19 replies
- 43.2k 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
- 18.3k 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
- 12.2k 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
- 14.5k 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
- 32.2k 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
- 20.8k 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
- 22.5k 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
- 20.5k 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
- 20.5k 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
- 21.7k 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…