Patient Experience Forum
A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).
280 topics in this forum
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Massive surgery twice in 12 months
by BillampSheilapNET- 12 replies
- 18.4k views
Hello We are new here so I will briefly tell our story: June 2014 William, my huband, was loosing weight - diagnosed with Type 2 diabetes and then prostate cancer. Sept 2014 radiologist noticed a lesion on the pancreas when reviewing scans of prostate. November 2014 hospitalised due to internal bleeding , found to be from stomach "ulcers" Referred to a London hospital with suspected pancreatic neuroendocrine tumour (pNet). A more unusual type of cancer that is often slow growing and not so aggressive. December 11th after scans to confirm the surgeon operated and removed 2/3 of pancreas,(the tumour was the size of a coke bottle)spleen, all stomach and one adrenal gl…
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Months rather than years!
by Kaye 19- 15 replies
- 27.8k views
I now know the total extent of my diagnosis. I have inoperable pancreatic cancer and yesterday I was told I have secondary cancer in my spine! I start chemo next week with folfirinox. I am a young 63 year old , married and look after my disabled son aged 38. My eldest son came with me and my husband and asked how much time do I have left and was told months rather than years! I think I am all cried out and I try to put on a brave face but I am absolutely terrified!!
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Help with treatment regime - patient experience
by keith johnson- 21 replies
- 26.5k views
Hi there fellow ‘sufferers’ and support people I would appreciate a little help from those of you who have received the treatment option of Gemcitabine/Abraxane Bit of background 2006 had surgery for Ca colon (2mm malignant polyp removed endoscopically but this showed other benign polyps along the colon so advised to consider total colectomy (for prevention of recurrence) after 6 months of dithering opted for op with end to end anastomosis (to prevent having bag) Went disastrously wrong with peritonitis resulting in two further ops ICU last rites etc with 10weeks in hospital and loss of 5 stone.!!!! Since have had back pain on and off put down to ‘adhesions…
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mums diagnosis
by kloum72- 2 replies
- 11.8k views
Hello My 68 year old mum was diagnosed on monday with pancreatic cancer with liver mets. Approximately eight weeks ago she woke up one morning and felt lethargic, shivery with no appetite...thats as quickly as it occured...went to bed feeling fine! My mum has no pain whatsoever has lost weight...but appetite has returned not quite what it was before. My mum says everything including savoury foods taste sweet but at the moment she is perservering. Her GP visited her at home yesterday at prescribed her anti sickness for nausea. Im still allowing the shock to sink in, my mum resigned herself weeks ago that something drastic was happening thus is coping relatively wel…
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Newbie Diagnosis Rollercoaster 1 2 3
by Minstrel1- 50 replies
- 56.8k views
Hi all Here goes with my first post! First felt unwell in January. Had a colonoscopy in February and given all clear. GP.had also referred me for a ultrasound as she suspected gallstones. Had ultrasound at end of March and they found a 3cm indeterminable mass in the head of my pancreas. Was called to GP surgery next day to be told the news. Decided to go private after GP secretary sent my referral to lower GI rather than upper GI by mistake! Was seen by a surgeon who decided the next step was to have a CT scan of chest, abdomen and pelvis. Radiographer told me the mass was not in my pancreas and I breathed a massive sigh of relief. Saw consultant again who said from th…
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Creon 40,000 units
by Pete12- 4 replies
- 13k views
Hi all, I haven't posted for a while as things are just 'chugging' along, but I do keep up with posts. Has anyone else had problems with getting supplies of 40,000 units of Creon. I haven't been able to get any for a couple of months,and have been told by the pharmacist that they are no longer available. Anyone else had this problem? Pete
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Hello, I am new here, I have come across this site and have been emotionally overwhelmed by the stories on here and I have complete admiration for the people and their loved ones who are affected by Pancreatic Cancer, your bravery astounds me. I am here because I am worried, my husband is 42, he has been suffering from indigestion for over 12 months, he has also in the last 12 months started to go off certain foods as he attributed his stomach pain and indigestion he was experiencing, to these foods. After leaving out certain foods from his diet he felt that it was helping but then the abdominal pain in the area above his belly button started to come back after eating a…
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dicission on whether to have chemo
by glen s- 3 replies
- 13k views
hi I have been diagnosed with pancreatic cancer it is inoperable I don't know if I should go ahead with chemo or not can anyone give advise on their experiance please.
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My first chemo
by Kaye 19- 14 replies
- 17.6k views
Hi everybody I had my first chemo 5days ago and really not doing very well. Admitted to hospital first night! I can't eat or drink yet...and what little I have doesn't stay down for long. I hope this will soon pass. I am on Folfirinox? Does anyone have any advice please? I am taking domperidome for the nausea....
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Waiting for final diagnosis
by Kaye 19- 3 replies
- 10.7k views
Hi I am totally new to this forum but feel the need to hear from other people outside the family. Nearly 4 weeks ago I was diagnosed with a malignant tumour in the pancreas after having a CT scan. I have no idea what size/stage it is as when I was asked if there were any questions.....I froze! Since then I have been to x for a EUS? And have had a full body MRI scan. Today is MDT are meeting....and Monday I have an appointment with the oncologist. I am absolutely terrified...and am wondering what questions I need to ask. I am 63 and look after my 38 year old son who has learning disabilities. Any advice would be appreciated. Many thanks
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- 7 replies
- 11.5k views
Hi Just wanted to let fellow "sufferers" (hate that term) know that having been diagnosed with PC ( whipples/chemo etc) just after my 53rd birthday I'm still here! Having just celebrated my 57th birthday and having a large glass of Chateau de Pape, I do feel very "lucky " but always apprehensive. Life is so different for me now but we always need hope......... I log into this forum daily, I cry for those who are struggling and those( and families ) who have lost their battle but please remember we are all different and not everyones symptoms/outcomes is the same. I always worry about posting positives, a) because I worry about tempting fate and b) because I know how …
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Chemo for new diagnosis
by Valerieno1- 17 replies
- 20.3k views
Hello I am new to this sight. I had a whipple 2009 with no follow up chemo In 2012 my blood markers started to climb but I have had c t scans every 10 weeks and they have been clear but in the last 2 weeks I have been told the cancer is back in the same place outside the head of the pancreas where the ampulla is they suspect it has spread to the liver I will have a Mir scan on Tuesday . Over the years I have read a lot about this horrible cancer and have no experience about chemo I am 72 in May . Is there any point in having chemo what would they expect to be able to do. Would it just prolong the my life by a few weeks my husband is devastated please help. Valer…
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my mum
by johassanx- 1 reply
- 9.9k views
Hi there, my mum is 84 years old and a week ago she went to the hospital after having different types of tests and the doctor said that something has showed up on her ct scan. He said that it could be pancreatic cancer. My mum has been feeling sick since her birthday almost 6 months ago, she has lost weight and also has constipation. The doctor has said to me, to do a test to make sure its a 100% cancer is to invasive for my mum and even if they get a result they would not operate as the operation is 7 hours long and she would not survive it. I have spoken to the nurse who was with us at the time and he said that they have taken into consideration her age, high blood p…
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High Liver Function Tests
by RoyBoy- 5 replies
- 13.3k views
Hi, I have not posted on here for a while. I hope and wish everyone good luck for the future. I have had some recent blood tests and they found my LFT's to be high-352(normal 30-130). I will be 1 year post Whipple on 26/04/15. I was diagnosed as Secondary Type 1 diabetic a few weeks ago. I am going for a fasting ultrasound scan on my liver at xx Hospital tomorrow and more blood tests and hopefully get the results later that day.
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- 5 replies
- 9.7k views
Tracy's Son Oliver running Hastings Half Marathon I know so many of you all continue to raise money and support our wonderful purple "Pancreatic Cancer Uk". Tracy's son Oliver is running the Hastings Half Marathon on 22nd March 2015 with 4999 others and he has chosen Pancreatic Cancer UK to raise money to help and thank everyone for the support that has been given to his Mum. You can read his Mum Tracy's story on this site and also watch the video Tracy took part in for the support line. She continues to battle and fight like everyone else here. He has been training hard and runs most mornings at 5am pounding the streets in London before going to the gym and then i…
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New IPMN in head of pancreas
by Go green sue- 5 replies
- 10.7k views
Hi, I just wondered if anyone else had experienced anything like me. I had a distal pancreatectomy in August 2014 to remove 3 IPMNs and was told everything was fine with a good clearance. However I have just had my 6 monthly MRI and been told I have a new IPMN in the head of the pancreas . Apparently it is fairly small but I go back to see my consultant next Monday to see what he decides to do. Best wishes to all you fighters out there! Will let you know what my consultant says Sue xxxx
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first time
by lel- 4 replies
- 10.3k views
Hi everyone This is my first time posting having joined last May,just after my problems began back last May with left flank pain, it has been a long journey back and forth to gp being told it,s stress in my head even when I also had indigestion which I've never had before also weight loss, had ultrosound back last April which was clear also had private ct done privately,which I don't think was carried out correctly with no imaging fluid and I had eaten and drank that day (anyone else had that problem). Also Had endoscopy,coloncoscopy,ultrasound on kidneys all done I think because g p Fed up with me going back and forth. All this time still with left flank pain,at last a…
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Hi my story
by gra60- 15 replies
- 19.9k views
Hi first of all i got some useful info from people about creon and would like to say thanks for that. I started loosing weight around September 2014 and by the end of sept i went very yellow i mean homer Simpson contacted gp got a same day appointment and was in hospital by lunch time. then things started to slow down a bit had a scan and was told i had a growth on my pancreas and it was pressing against the bile duct and would need stenting. this took over a week because the hospital only do this on Fridays, so was 2 weeks before it was done at same time a biopsy was taken. was discharged middle of October and had follow up appointment with surgeon about 3 weeks…
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gemcitibine
by gra60- 5 replies
- 10.1k views
Hi Im due to start chemo on 26 feb drug is gemcitibine have a fact sheet explaining side effects etc but was hoping to get some info from anybody who has had this drug as info from oncologist differs from fact sheet regards side effects. thanks in anticipation Graham
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- 8 replies
- 11.1k views
Having lurked on the site for coming up to a year, I want to say a huge thank you to both patients and family users of this website. My lovely Sister In Law Tracy was diagnosed in November 2013. I don't need to go into how as a family we felt, that is something you all understand. The journey so far has been helped by the wonderful support of both Jeni and Dianne, who do a tremendous job, and to you all too as I have learnt things by reading blogs etc, sending emails and making numerous phone calls. Today is a proud day for us as Tracy's story has been published on the site. Writing this story wasn't easy but a way that she could repay so many of you for the help we…
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Creon case
by RoyBoy- 5 replies
- 9.9k views
Hi all, I wanted to share that if you email your address to the U.K. suppliers- Abbot- they will forward you a blue plastic pill case that holds 12 Creon tablets: medinfo.shl@abbott.com
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Advice for Creon
by Pete12- 9 replies
- 13.9k views
Had my Whipple in June this year and all is going to plan so far. The only issue I have is with continuing problems with floating/oily stools. I have been taking Creon for about two months now after finally being seen by the Dietetic's team at the hospital. I lost 12 Kilo's following my surgery but have put most of this back on since taking Creon. I had my second appointment with the dietician 2 weeks ago, and as I have put the weight back on I was "discharged" with no follow-up. my problem is that despite taking 160,000 units with main meals and 80,000 with cereals or snacks my stools are still pale, oily and float. Is this normal? or should I request a further appointme…
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first time on this site
by yvonne57- 4 replies
- 8.9k views
Hi I had whipples procedure back in march, and completed six months of gemcetabine in october. Recovered pretty well and managed to go back to work on reduced hours in December. Love being back at work and the normality it gives me. Only thing is now I have suspected lung mets,and appointment with oncologist has been brought forward after having a CT scan. See him next week.Anybody been through similar experience? Yvonne
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Advice about scans
by Pete12- 4 replies
- 9.6k views
Hi I have already posted on the general chat forum explaining my story regarding a Whipple procedure carried out on 6th June this year. In hindsight, given the title of this forum, I should probably have posted on here first, although the response to my postings on general chat have been brilliant. My question is. When should I expect to have a scan to determine the current situation. My next appointment with the Consultant/Team is the 10th December which will be 6 months since my op. Should I ask for a scan at this meeting, or am I "jumping the gun" a wee bit. My main concern is that I was scheduled to have post-operative chemotherapy as a precaution but this has bee…
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Support Line Film
by Ant11- 5 replies
- 8.6k views
Would like to thank you for allowing us to be a part of the filming for the support line. We had an amazing time doing this and hope it assists more. It has been invaluable to us. Jeni and Dianne are the most helpful, kind and supportive people you could ever wish to meet. Many thanks Annette
