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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Welcome to this new sub forum 1 2 3 4
by Support Team- 92 replies
- 207.3k 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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First folfirinox experience 1 2 3
by kate2101- 74 replies
- 117.7k views
First one over! Arrived at hospital 8.30am yesterday for picc line. Unfortunately my left arm veins were ‘too wobbly’ and after a few attempts had to to try right which worked immediately. Treatment - much better than I expected, I think the only real effects I felt yesterday was the oxyplatin which made me feel as if my tongue was too big for my mouth and I sounded like I’d been in the pub all afternoon. If only! Horrible journey home with daughters sweatshirt tied round my sweaty face with strict instructions from staff not to take it off till I was in the house. Finally arrived home 5.45, long day! Sorry if TMI but may be useful if I list all experience. Took …
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Living with uncertainty
by Rowena- 1 follower
- 6 replies
- 4.4k views
I was lucky enough to be put on cancer fast track by my GP last year, as back then I just had a nagging back ache, tiredness and stomach ache. I was diagnosed end of June 2022. I pushed for a prognosis and was given 6 months. I have the best husband and seeing him so upset nearly tipped me over the edge. I’ve had 7 rounds of chemo. Some bad days which were difficult at the time, but are just bad memories now. The chemo stopped the pesky tumour in its tracks, but did not shrink it away from the major blood vessel so surgery was ruled out. As the tumour was only in the head of my pancreas and had not spread I was lucky enough to be eligible for the EMERALD radiotherapy cl…
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Diet supplements to maintain weight
by Yve Bailey- 1 reply
- 524 views
Can anyone advise in choices of high calorie supplements, powders to add to meals, shakes etc. for post Whipple's and now palliative care. Man y thanks
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Post-chemotherapy neuropathy - how long?
by Luke1971- 1 follower
- 0 replies
- 1.2k views
I finished six months of FOLFIRINOX at the end of February, 17 weeks ago. Since then I've been experiencing lingering peripheral neuropathy in my fingers and toes. It's really hard to quantify, but I think it's (very) slowly improving. I've been taking mushroom extracts and also re-started acupuncture, which might be helping. I saw my oncologist this week and was advised that it's only permanent in about 10% of patients, but it can hang around for up to two years. Does anyone else have any experiences with this that they'd like to share?
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National Creon shortage
by Luke1971- 1 follower
- 7 replies
- 3.2k views
Is anyone else experiencing major problems getting hold of Creon? There have long been slight issues, but the 25000 capsules have been unavailable nationally since mid-February 2024. I am assured that this won't be forever - and I can usually track down the 10000s - but it is a hugely worrying problem for those of us who need this for the rest of our lives and can't eat without it. Any tips gratefully received.
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Pancreatitis after FNA biopsy
by RuthN- 1 follower
- 2 replies
- 1.5k views
Hi, I’m Ruth. This is my first post I don’t yet have a diagnosis. I’ve been offered an EUS, endoscopic ultrasound with a fine needle biopsy of a cyst in the tail of my pancreas. I was told there’s a risk of pancreatitis after this but I wasn’t given any other information about that. So my questions are does anyone have experience of this? How soon after the procedure do you know you’ve got it, what’s the treatment, does it get better or is it permanent, and if it does resolve, how long does that take? Does it mean being in hospital? This cyst was an incidental finding, I am 81 and really well. I just can’t decide whether to pursue th…
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Typical long-standing symptoms and nothing seen on CT ??? can this still be PC ?
by hopethereisnothing- 6 replies
- 5.3k views
Hello everyone. Iam new here and don't really know if this is the right place for my question, but I am literally having the most difficult times in my life. I think I have PC and still waiting for tests for it. I am a previously healthy 39 yo female, I don't smoke or drink and have no family history of any cancer. I started to feel unwell in October 2022, first symptom was menopause-like hot flushes, followed by feelig gassy and flatulent. I then thought this must be my hormones messing up with my gut. In November I got some abdominal pain, increased frequency of stools (occasionally loose but no color or smell change or floating ..etc) and new unusual …
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Newly diagnosed
by Luke- 4 replies
- 4.4k views
Hi I’m new the this site and hope to get some understanding of what I to expect in the coming months. I have a tumour at the tail end of the pancreas and will have an operation to remove about 30% and also the spleen. the doctors have given me information from a medical perspective, which seems very grim. is there anyone on the forum who can give me an idea about what to expect post operation and their experience?
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Digestion problems following Whipples Procedure
by Jbaxter55- 2 replies
- 2.1k views
I have been surprised by the gut issues I have now, following Whipples Operation for early stage Pancreatic Cancer in June this year. As a nurse I have quite a good understanding of the physiology of the body but did not expect the level of change to my body after this surgery. I suffer excessive wind, diarrhoea or very unstable bowel function. I take Creon capsules every time I eat, but do not find them that helpful ( 1-3, 35,000 unit capsules). Does anyone have any advice for me?
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Not diagnosed
by Michelle43- 2 replies
- 3k views
Hi everyone, I'm new here, and had a little browse before posting. My heart goes out to each and all. As my post states, I've not been diagnosed, I'm probably just needlessly stressing. My mum was unfortunately taken by this awful and cruel cancer. She was 58, and it still feels like yesterday, though almost 12 years ago now. I am 43, over the last month, I've been having what I thought was possible upper uti symptoms. Pain on right side abdomen and upper back. (Under ribs) After a few days I got antibiotics, then 2nd dose as symptoms were still there. I'm still no further forward. I've had kidney stones previously and so I was thinkin…
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My Journey So Far
by Lee W- 2 replies
- 2.8k views
My husband of 44 years Lee, lost his 18 month battle against pancreatic cancer at 11.45 on Sunday the the 28th of may, he died peacefully at home while sitting in his favourite garden egg chair in the presence of family and friends, RIP my darling you will never be forgotten.
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Private CT
by BJNG- 1 reply
- 1.6k views
Deleted
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- 10 replies
- 5.8k views
Hi All, In the US - haven't found a forum quite like this one so would like to post a bit? Diagnosed about two months ago - 64 yo female - had just had an unrelated surgery, and was slowly recovering, but not feeling well. My professional caregiver and my family noted I looked jaundiced. Two days later had an ERCP, then a plastic stent the next day, then a week later an EUS, including an uncovered self expanding metal stent (SEMS), and biopsy confirming 2 cm cancer on the head of the pancreas, that was constricting the bile duct. Met with a local surgeon with credentials in Whipple surgeries (only open variety) - he felt neoadjuvant chemotherapy…
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Hi, I'm Yeliz
by yeliz- 1 reply
- 1.9k views
Konu nasıl açılıyor acaba ?
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- 2 replies
- 3.2k views
Hello, I realise this is a relatively new trial, but we wondered if there is anyone on here with experiences of being on the defractinib with VS-6766 for pancreatic cancer trial? My Dad started it a couple of weeks ago but already one of the side effects is making him seriously question whether to continue. It would be good for us to talk to anyone who has experienced the trial and its side effects, if there is anyone! We understand there are only 3 hospitals/centres in the country offering the trial for pancreatic cancer and he is the first at the centre he attends.
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- 1 reply
- 4.3k views
I have had a number of MRI's on my pancreas which showed Atrophy and dilated ducts but no obvious cancer. I have now been called in for a abdominal MRI. Have had a blood test looking for tumours which proved negative. I have been taking Oxycodone for 6 years now initially at 40mg a day now down to 25mg a day a combination of immediate and controlled release capsules and tablets. I cannot tolerate solid food and am forced to take 4 laxatives and a suppository daily to poo passing only watery substance. Has anyone on her got the slightest clue as to what might be the problem with me? Thanks
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Newly diagnosed at 42
by Mummyofone- 4 replies
- 6.5k views
Good morning, I recently was given the devastating news that I have pancreatic cancer. The tumour is measuring 63mm which I now understand to be quite large. I am only 42 years of age and have a young daughter who is only 7. I have my first appointment with the oncologist next week where I will know more. I have lots of people around me but feel very alone at the moment and I hope this site will help me on my journey. Thank you for reading Karen x
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Cholangitis?
by worrier- 1 reply
- 2.8k views
Hi, in 2008 at the age of 66 I went through a Whipples and had part of my Pancreas removed. Fortunately it was benign and have lifetime prescription for Creon 25000. On occasion I get a sensation in my stomach which eventually turns to nausea and I feel hot and cold at the same time. I also get sever tremors and cannot stop shaking. I have to take to my bed, often for two days. I have been given a standby prescription of Ciprofloxacin which I take when these attacks come on. I am not sure but I think the condition is called Cholangitis but am not sure. Has anyone else out there who has been through a Whipples experienced anything similar? Peter
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- 2 replies
- 3.9k views
I was told I was lucky 9 months ago as after having my throat cancer cured they did a scan and found that I had early onset pancreatic cancer apparently that was classed as lucky as this horrible disease isn’t normally found till it’s too late. I had 12 rounds of folfirinox and all the scans were indicating that it was reducing the tumour so they said I would be able to have the whipple operation. then I had 15 rounds of radiotherapy with oral chemo tablets. I then had a scan and this is where the BANG happened I saw the surgeon last Friday a week after my scan and he said that between stopping the chemo and having the radiotherapy the tumour has spread on …
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Advice
by Mrs T- 4 replies
- 3.9k views
Hi All, My mum was diagnosed last week with Stage 4. Spread to liver. She is 63 and handling the news so well. She was adamant that she didn't want Chemo but is now considering it. She has been offered the most aggressive one. The issue is we just need advice on pros n cons from real people. Her thing is quality over quabtity. My uncle , her brother died 2yrs ago from the same thing so she knows what is coming so must be terrified. He was only offered the lighter of Chemo due to his weightless. Any advice welcome. Xx
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News on PC
by Skippy- 1 reply
- 3.2k views
Reading my newspaper yesterday gives me hope. Treatment for PC remained unchanged for several decades but in addition to this week's news about a vaccine that could prevent PC returning, some hope was provided last month by an experimental treatment in the US to make immune cells attack tumour cells. Shrinking tumours in a female patient. Pioneering vaccine developed at Memorial Sloan Kettering C Centre. Raising hopes. 12 patients with Rectal cancers were inf disease vanished. A form of immunotherapy stimulating the immune system. No magic bullet but combination of personalised drug therapies. Too late for my dear bro, but if this reading is accurate. Gives us…
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Rowland
by Rowland- 6 replies
- 3.9k views
I was diagnosed with Pancreatic Cancer March 2022. After contracting Infectious Gastric problems in February and going to A&E twice. I was due to have the Wipple procedure in April in May I caught Covid so it was cancelled . A new evaluation proposed Chemotherapy to shrink the Tumour as some blood vessels, were thought too close for surgery at the time. I am due to start Chemo this month . I am 61 and there is just my wife and I so it's very hard on her. I was found to have type 2 Diabetes in October of last year. I wasn't shown blood sugar testing , prescribed a 500g metformin a day . I had a bile duct stent put in this year .And told to stop…
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Newly Diagnosed
by Mandy Moo- 5 replies
- 5.8k views
This is my first post on here. I'm 59 years old and was diagnosed with a 4.1cm tumour on the head of my pancreas on 6th January 2022, after having unexplained abdominal pain since at least 2016. I was also told that I have "lumps" in my pelvis (5cm on the right and 1cm on the left) which could possibly be Krukenberg tumours that have spread from my pancreas. I have an appointment with my Pain Specialist and Specialist Nurse in 2 days for the results of my PET-CT scan and endoscopic ultrasound. My Consultant has already told me that the tumour on my pancreas is bigger than he would have liked and is borderline for the Whipple's procedure but this is also dependent on wheth…
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Causation of PC always searching for ans
by Skippy- 2 replies
- 3.1k views
I'm sure all attached to this site are carers and sufferers of this disease. I've been attached since Sept 2019. I sadly finally lost my bro to the disease in March 2021. I've not stopped thinking of how, why? And I wonder still. My bro was fit healthy man a footballer, regular active ballroom dancer, he didn't drink, nor smoke. There's no history of this disease to our parents or grandparents. The only meds my bro took was " warfarin" when he had one blood clot to his leg after a football game, at aged 40. So for 36 years was given Warfarin. I wonder, as I read about Warfarin it is top of a list, with another 260 types of drugs which are lis…