Patient Experience Forum
256 topics in this forum
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Welcome to this new sub forum 1 2 3 4
by Support Team- 92 replies
- 187.9k views
Welcome to this new sub forum. We hope this will be a forum specifically for ‘patients only’ (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up) to use. As the main forum has many opportunities for carers, partners, relatives to post threads alongside patients we feel there is a need to dedicate a forum especially for patients. This forum is available for everyone to read, however we hope that you will respect patients and allow them exclusive use of this forum. We will be interested to hear of any of your comments or how you have managed some of the following issues: • Your treatment - how is it affecting you? how…
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Elevated CA 199 - What next?
by Herrie- 1 follower
- 5 replies
- 817 views
Hello, I am happy to have found this site. Thank you all for being here. I had three CA 19-9 tests, and the last one was significantly higher than the previous test: December 2020. CA 199 @ 35 kU/L. February 2021. CA 199 @ 38 kU/L September 2021. CA 199 @ 113 kU/L I received these results directly from the lab. The prescribing surgeon hasn’t contacted me. If he doesn’t call me in the next few days (he didn’t call me after the first two tests), I plan to call him. >> To prepare for the consultation, can anyone tell me what additional tests I should request and what my concerns should be? Here is m…
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- 4 replies
- 1k views
Looking for someone who has been through the above to be able to ask questions of. This is what has been recommended by a surgeon that I have. I understand some may not want to reply, but it would be very much appreciated to find out more. Thanks Gertie
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SABR
by VivC- 0 replies
- 181 views
Does anyone have any experience of SABR as an alternative to surgery?
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Post Whipple
by Jennysue- 0 replies
- 184 views
Hi everyone, I am new to this site and am really glad I have found it. I live in Greece and was diagnosed with PC in September. I am now 5 weeks post Whipple. I left the hospital with no medication at all and I am waiting for the results of biopsies carried out during my operation. I am being very careful with what I eat and have managed to put on 6lbs, with the help of a nutrition supplement. My biggest problem (apart from pain) is that I have been constipated since the operation. Can anyone give me some advice please?
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Barbara
by Barbara1- 1 follower
- 3 replies
- 477 views
Having read some of the stories on this forum I know that I am one of the lucky 10% who are offered surgery. I had the whipple procedure six weeks ago and am now home recovering and awaiting chemo. However I have lost two stone in weight and was only just over 8 stone to start with. I am trying to put on weight but am plagued with diarrhoea once or twice a day. I am taking creons between 8 and 10 with each meal. Has anyone discovered the secret of stopping the diarrhoea.
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CBD oil - experience
by Sparklyrebecca- 7 replies
- 14.5k views
Hi all My dad has just been diagnosed. I read and heard good things about the CBD oil. I spoke to Nikki, one of the nurse specialist and she recommended posting on here to ask about patients experience with it and where they sourced it from. Can anyone advise? any help will be greatly received. Many thanks
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How to put on weight
by Rachel161080- 1 follower
- 9 replies
- 1.2k views
Hi all, I’ve never written on a forum before. My mom was recently diagnosed with Pancreatic Cancer and is due to start chemo soon. Our problem is her weight, she has only ever been a small woman to start with weighing about 8 stone but now her weight has gone down to 5 stone 12. I’m worried she won’t be strong enough to tolerate her chemo. It has been recommended she have the folfirinox but we are seeing an oncologist tomorrow to confirm if they will give her that one. They say it gives the best chance of getting her to operation stage. I’m desperately trying to get her to eat something but she has no appetite, feels full, has a dry mouth and is sometimes sick. The hospit…
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Eus
by whykel- 1 follower
- 8 replies
- 1.2k views
Hello Can anyone help me.. I had a endoscopy 6 weeks ago and was given the report was normal, diagnosis normal. Then 20 minutes ago I get a call saying I have to have a EUS. Im out of my mind with worry Why have I got to have this?? I'd appreciate any help
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Adhesion pain
by Jess- 0 replies
- 386 views
Does anyone have experience of severe adhesion pain months after the Whipple..has anyone tried massage therapy? Thanks 💜
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What a week!!
by Skydogg- 1 follower
- 1 reply
- 609 views
During the Covid pandemic, I'd not had my normal diabetes blood check, so I asked my wife if she could book me one while she was having her blood check. this was Monday June 13th. They had a spare spot that morning. On the 15th, my daughters 14th birthday, my GP phoned to make an appointment for 11:00 the same day to discuss the results. My wife & I went to the GP's appointment where he told us that my liver levels were raised, & he wanted me to go to hospital for tests. I had slight jaundice, which we hadn't noticed. it was during Covid, & weren't seeing many people. I was admitted by 12:30pm the same same day. I was due to have a ct scan as soon as poss…
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Gemcitabine
by faylemv- 1 follower
- 3 replies
- 1k views
Hello I’m 58 years old woman and 12 months ago I was diagnosed with stage 4 pancreatic Cancer with secondaries in my lungs and liver. I was given months, weeks and possibly days to live. I’d seen my GP with what I now know are classic symptoms of pancreatic Cancer, awful gastric reflux and pain in my upper back. My GP put this down to the stress I was under at the time and sent me away with two months supply of Omeprazole. I will always wonder if I’d been diagnosed earlier I may not have developed secondaries In February I completed 12 rounds of Folfirinox chemotherapy followed by 4 radiotherapy treatments to help manage my pain. I’m now having Gemcitabine chem…
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Mary Joseph Nodule
by faylemv- 1 follower
- 0 replies
- 460 views
I am 58 and a year ago I was diagnosed with stage 4 pancreatic cancer for which I’m having chemotherapy treatment for. I count myself lucky to be still alive as initially I was given a prognosis of 3 to 4 months Today I will be having an ultrasound scan to confirm a probable DVT which can be treated My question is regarding a Mary Joseph Nodule which I have in my belly button. Has anyone else had one of these and if so did you have any treatment for it? I’m guessing that it’s a sign that my cancer is advancing. I’m so scared of dying when I have so much to live for Bye for now
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Urine specimen
by whykel- 1 follower
- 0 replies
- 335 views
Hello everyone After you've had a endoscopy and weeks later you have a out patient appointment. Does anybody know why you have to bring a wee sample? Thanks in advance x
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NHS vs Private Operations? Distal Pancreatectomy
by thedailyem- 0 replies
- 455 views
Hello! I am hoping I can get some insights from people who have lived in the UK longer than I have. It looks like I'm in for a distal pancreatectomy. Obviously I have many things that are causing stress, but one I just can't seem to find enough information or experiences with to calm my anxiety. And ironically it has nothing to do with the actual surgery (which I'm feeling okay about). I am from Texas, and have never experienced a hospital stay where you were in a room with another patient, much less multiple patients like what it seems I'd be in for with NHS wards here. I can see there are private options in the same hospital (Royal Free) but ca…
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Distal pancreatectomy and splenectomy
by Daisy1112- 5 replies
- 1.6k views
Hi I am new to this. I have been diagnosed with a mucinous cystic neoplasm on the tail end of my pancreas and have been listed for the above surgery. Just wondered if there was anyone out there who had been through the same thing? Many thanks
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Function of the Pancreas after Whipple
by Thushan711- 3 replies
- 653 views
Hi I am new to this site. I am from Sri Lanka and had the Classic Whipple done in late May 2021. The tumor was in the Head of the Pancreas. Now I am taking my Chemotherapy (3 out of 6 sessions completed) and I feel ok. I recovered from the surgery (had few minor infections from the surgery area, external) and that is no longer an issue. I was asked to take Creon 10000 with every meal and one question which I never got an acceptable answer was, whether the remaining part of my Pancreas will ever perform its functions and do I have to depend on Creon for the rest of my life. I believe about 60% of the pancreas was re-attached. I already feel the effects of Cr…
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Advice needed - Hiccups
by SarahW- 1 follower
- 1 reply
- 527 views
My Dad started his chemo on Monday. Day 2 he started hiccuping and it is driving him mad. It has stopped for 1.5 hrs max so obviously affects his sleep. Has anyone else had this and can share how they may have gotten around it. The nurse said there are other anti sickness drugs to try. Reading online the dexamethasone or Metoclopramide might be the cause but are there any alternatives to try or alternate with?
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Follow up out patient appointment
by whykel- 1 follower
- 0 replies
- 440 views
I know I've posted before but.. For someone who suffers from extreme anxiety and I do cognitive behaviour therapy and face to face with a counsellor. So what I'm saying is I had a endoscopy 3 weeks ago and it said normal but.... I'm so scared of the out patient appointment 25th of August I don't know what it's for I'm petrified
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Early days...
by Lori- 2 followers
- 5 replies
- 1.1k views
Hello everyone, I'm new here and thought I'd share my journey so far... I'm a 48 year old women, I started having stomach pain at the end of March, it continued to get worse, and spread to my back and by May I asked to see a specialist. I went for an endoscopy that week and was told everything looked fine, I was prescribed Lansoprazole to reduce my stomach acid. I took that for a week and when it didn't seem to help I was told I probably have IBS then so instead I should take Amitripylene. I started that new medication reluctantly, but then within a coupld of days I went jaundiced. My eyes were yellow, my urine was dark brown, and my stool was pale grey. I ended…
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After endoscopy advice
by whykel- 1 follower
- 7 replies
- 650 views
Hello. I had a endoscopy 3 weeks ago and now I have a letter to see the consultant or a team member on thr 25th of August. I know that's 7 weeks after my endoscopy but I'm now really scared something is wrong. Though my report seemed fine. Can anyone help to put my mind at rest or are they still investigating? Thankyou all
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Out patient
by whykel- 1 follower
- 0 replies
- 419 views
Hello everyone I had an endoscopy 2 weeks ago. And it appears normal. So is it normal to have a out patient appointment? Its in 4 weeks time. If anyone can help I'd appreciate it as my anxiety has started again big time. Thankyou in advance. X
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We're new to all this.....
by rogs- 1 follower
- 7 replies
- 1.2k views
My wife started complaining of difficulty digesting her food some 4 months ago, and the GP prescribed Omeprozole tablets, which helped for a while. She also had some abdominal bloating (not serious) .The GP ordered blood tests, and included a test for CA125 in her requests. Slightly unexpectedly, that result came back high, and the GP referred my wife to Gynaecology, for further tests for ovarian cancer. An ultrasound and subsequent CT scan revealed 2 benign ovarian cysts, but the letter received from the gynaecologist - following that result - included the apparently innocuous phrase 'the CT scan has shown some pancreatic duct dilation, which requires further inv…
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Restrictions lifting on July 19th - how do you feel?
by PCUK Ellie- 0 replies
- 421 views
Monday sees further easing of restrictions across the UK. Many are eagerly awaiting so-called 'Freedom Day', but we know that if you're living with pancreatic cancer, or supporting someone who is, things may feel far from normal. You might be excited at the idea of being able to do more, or apprehensive about what the next few months will look like. Maybe you feel a mixture of optimism and anxiety - or perhaps you feel that little will change for you come July 19th, and are intending to carry on taking the same precautions as before. However you feel about Monday, you aren't alone. Please feel free to share your thoughts in the replies, and remember that the nu…
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Two questions Gemzar Abraxane
by Vasil- 0 replies
- 466 views
Hi all. I have two questions regarding treatment with Gemzar Abraxane. Has anyone experienced an initial increase in CA 19-9 and then gradual decrease. In my father's case this marker rose from 6k to 10k after the first session and then stuck at 10k although it's been a month of weekly treatment so I am wondering if it's going to drop down at all. And my second question is about third line treatment. Has anyone had a further treatment after successive failure of Folfirinox and Gemzar Abraxane. Thank you so much.
