Patient Experience Forum
267 topics in this forum
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Welcome to this new sub forum 1 2 3 4
by Support Team- 92 replies
- 191.8k 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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My Journey So Far
by Lee W- 9 replies
- 808 views
Hello, I have been reading the contents of these forums since my diagnosis of locally advanced pancreatic cancer in December 2021, I am 65 years old relatively fit male my tumour measures 3.9cm and is in contact with 20% of my portal vein. I started a 12 cycle regime of Folfirinox chemotherapy in March of this year, I have had a really bad time with the chemo right from the first cycle I was getting pain and discomfort in both armpits, which started 24 hours after my chemo and didn't go away until 5 or 6 hours after the 46 hour pump filled with Fluorouracil was removed, I got an infection after my third cycle, which resulted in two weeks in hospital and the…
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Newly diagnosed at 42
by Mummyofone- 2 replies
- 1.6k 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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Advice
by Mrs T- 4 replies
- 432 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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- 0 replies
- 166 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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News on PC
by Skippy- 1 reply
- 273 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
- 723 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- 1 follower
- 5 replies
- 1.7k 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
- 529 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…
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- 8 replies
- 1.2k 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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SABR
by VivC- 3 replies
- 1.2k views
Does anyone have any experience of SABR as an alternative to surgery?
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We're new to all this.....
by rogs- 1 follower
- 10 replies
- 2.9k 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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Should I go see my GP with PC symptoms?
by DizzyD- 3 replies
- 1.1k views
Hi all I am a newbie hear....many thanks for accepting me on this site. I have not been diagnosed with PC but have some symptoms and I am not sure if I should go see my GP. On a conscious level I don't want to waste his time, but being honest on a subconscious level I am really afraid of the outcome. You see, unlike all you wonderfully brave and strong people who have been diagnosed with PC and are being treated for it, I'm really don't think I would want any treatment if I was diagnosed with PC. It goes without saying, but I will say it anyway, What's the point in seeking a diagnosis if I don't intend to have any treatment? Anyway I don't have all the symptoms but here a…
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Living with Fulforinox - some tips
by T_pc_slogger- 1 reply
- 771 views
Having been diagnosed 18 months ago I have been through many Folfirinox cycles so I thought I would post some of the tips and tricks that have proved useful. For the first 12 cycles the mix included Oxaliplatin and this did produce some significant side effects. I tried several different anti-nausea treatments and settled on Metaclopramide. I guess this is highly individual. I found that the side effects peaked in day 6 and 7. I kept myself to myself during those days and would often go to sleep in the afternoon. I live with my wife who has been great and I totally acknowledge how lucky I have been to have a supportive partner. On days 6 and 7 though it w…
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First folfirinox experience 1 2 3
by kate2101- 73 replies
- 105k 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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Elevated CA 199 - What next?
by Herrie- 1 follower
- 5 replies
- 1.8k 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
- 1.8k 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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Post Whipple
by Jennysue- 0 replies
- 1.1k 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
- 1.5k 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
- 16.1k 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
- 2.2k 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
- 2.3k 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
- 988 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 reply
- 1.4k 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- 3 replies
- 2.1k 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…
