Advanced pancreatic cancer
385 topics in this forum
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Ascites/Advanced symptoms
by Anna2020- 2 replies
- 4.9k views
Hi everyone, Just looking for some support and advice really, to see if anyone's been through anything similar. My mum had a CT scan on 6th August this year after being admitted to hospital with jaundice. (She'd had some blood tests done with her GP who suspected gallstones. Once they received the results they then referred her straight to a&e). Once she had the CT done, she was told just a few hours later that it was very bad news and had a mass on her pancreas. He said he was almost sure it's cancerous. She then had an ERCP on 10th August and had a 7cm stent fitted. They also tried to take some brushings for a biopsy which was unsuccessful. We then m…
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My Mum
by LST- 23 replies
- 50k views
Hi everyone. I’m hoping I can get a bit help and support. My mum was diagnosed on 7 jan 2018 with stage IV PC with very small mets to her liver. Tumour is the the main body of the pancreas. She has been keeping well, no weight loss, eating well, and only a little pain which she’s been controlling with one paracetamol 3 times a day. 2 weekends ago we ended up at the hospital with a blood clot in her leg and small ones in her lungs. She’s now on injections to stop any more from forming ... hopefully. Mum has seen oncologist and is to have a liver biopsy on 18 Feb with chemo planned to start by end feb. I can’t remember which one but it’s a mixture of 2 with 3 we…
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Our story so far
by dw010- 10 replies
- 22.3k views
Hi, this is my first post here. My Mum (diagnosed Mar 29 age 69)had her 4th cycle review of her gem/abrax treatment, good news is her liver mets and lung nodules are completely gone. Her main tumour has shrunk 64% and the professor said all signs /scans point to it being dormant, in that what remains is not active. Bad news is she developed pneumitis a rare reaction to gem/abrax which means she can't have it anymore. The Professor recommended a chemo break but will be monitoring her with bloods/scans every 2-4 weeks. Folfox will be her 2nd line treatment once needed. He also testing genetics as suspects she may be brca due to family history and good results fr…
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My mum
by simonstones- 1 reply
- 13.3k views
Hi everyone Just looking for some thoughts/experiences from others who have gone through similar situations. Some background... My mum is 68, and was diagnosed with locally advanced pancreatic cancer in the tail of the pancreas on 2nd July 2018. Some of you may recall my fight to get her surgery last year, after she was dismissed as being 'too complex' with all of her existing health conditions (lupus, type 2 diabetes, liver cirrhosis caused by non-alcoholic fatty liver disease, history of recurrent blood clots and polymyositis to name but a few!). Cutting a very long story short, some 168 days after diagnosis, she underwent a distal pancreatectomy to remove the tu…
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Tumour markers
by Theresa Upton- 3 replies
- 10.8k views
Just having round 11 of floririnox, the last few have been at 80% and my tumour markers have consistently reduced. Today I have learnt that they have risen from 37 to 43, should I start to worry. I have a scan on Saturday but the results won't be ready for 2 weeks. I am well in myself, good appetite, no weight loss and reasonable energy levels. Any thoughts. X
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Getting confused with all the information
by Theresa Upton- 4 replies
- 12.5k views
Hi, I continue to read so much information relating to pancreatic cancer and I am becoming confused. I was diagnosed in September 2018 with pancreatic cancer with liver metastases, the main tumour which is 62mm x 38mm is in the body of my pancreas and is encasing the splenic vessels and the common hepatic artery. The lymph nodes are also affected. At the point of diagnosis my only symptom was tiredness so I was offered folfirinox and I am due to have round 4 this week, I have also been told that my life expectancy can be measured in terms of months not years and it is a prediction that I do want to accept. I have read stories about people with similar diagnosis that have …
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RIP Erika xxx
by Fernack45- 7 replies
- 14k views
So very sorry to hear this sad news. She was a warrior and we should all continue to fight in her memory xxxx
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Newly diagnosed ... first post
by Finchy- 1 reply
- 10.9k views
On 15 Nov 2018 I visited the doctor to get the results of an ultrasound. He said I had a slight dilation of the pancreatic duct but I didn't have a mass. As I was expecting him to say I had gallstones, this came as a shock. When I left the doctor I Googled it and discovered that I was at a very high risk of cancer. One search led to another and I found this website and signed up. The irony? That very day was Pancreatic Cancer UK day. I went for more tests and was diagnosed as having inoperable pancreatic cancer three weeks ago. I'm 56 years old. I don't have grandchildren yet. I'm nowhere near ready to say goodbye to my husband of 32 years. I hate the thought of l…
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Unusual presentation
by NatalieE- 2 replies
- 10.9k views
Hi all, I just wanted to post my dad’s story so far to see if anyone has had any similar experiences. On the 7th Jan my dad was diagnosed with advanced pancreatic cancer with mets to the peritoneum. He was told that he’s a good candidate for palliative chemo in that he seems quite well and the doctor said he was between 0 & 1 on the ECOG performance scale. He went to see an oncologist last week who is baffled by my dad. He said that he seems remarkably well for somebody with this kind of diagnosis and that his cancer markers are very low with someone with advanced PC. apparently they are 25 and he’d expect them in the thousands. The oncologist is no…
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update/advice
by Theresa Upton- 1 reply
- 9.2k views
Hi, today I received my midway scan results and although there is a cure they are good. The tumour on my pancreas has reduced by 50% and my liver metastases has significantly reduced in size. Although I am well in myself I am finding that the chemo is taking it toil and I am feeling unwell for longer periods of time, so I have discussed today with my oncologist whether to reduced the strength of the chemo so the side effects are reduced or to go from 2 weekly treatments to 3 weekly...……this option gives my body more time to recover and also gives me more time away from the hospital and time to spend visiting etc. Does anyone have any thoughts/ experience etc. Th…
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This evil disease
by drtzzr1100- 14 replies
- 17.8k views
Hi all I am new to the forum although I have been reading some posts this is my first. My poor husband who has just turned 58 was diagnosed in October with stage 4 metastatic cancer, tried the chemo for palliative purposes but it made him too poorly so he had to stop. He’s had a stent fitted into bile duct in October also. He is now very weak and we are getting some support from district nurses and McMillan. He can’t eat and says everything tastes bad even drinks , I have tried pineapple juice and a million other things but plain water is all I can get him to have any advice would be appreciated. Today he has had to have injections for pain and sickness from the nurses …
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Disapointed
by Theresa Upton- 6 replies
- 12.1k 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
- 9.1k 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
- 25.4k 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
- 11.2k 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
- 30.4k 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
- 18.2k 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
- 16.1k 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
- 8.8k 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
- 8.7k 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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Pancreatic Cancer Timeline - 2018
by Hyperfocus- 3 replies
- 14.4k 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
- 10.9k 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
- 11k 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
- 18.5k 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
- 13.8k 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
