Patient Experience Forum
233 topics in this forum
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Welcome to this new sub forum 1 2 3 4
by Support Team- 92 replies
- 183.8k 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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- 4 replies
- 526 views
My mother was diagnosed on the 8th of september 2020 with advanced PC. however, she couldn't see an oncologist because 2 biopsies came back inconclusive and even though they knew it was PC the inconclusive biopsies prevented her from seeing an oncologist. Putting her in the farcical position of both having and not having cancer. After a lot of phonecalls and even an attempted intervention by a Dr from a different trust, they finally offered her an appointment to see an oncologist 105 days after her diagnosis. Unfortuneately, she was in the final stages of life by then - something they weren't even aware of. I'm currently in the middle of a complaints procedure abou…
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- 4 replies
- 2.8k views
Hi all, I am new to this forum but wanted to see whether anyone out there found that a side effect of Folfirinox chemo was a persistent taste. I am left with a taste that is a cross between bile and metal. Has anyone found foods that neutralise or go with this taste? I have tried ginger and other spices but they dont seem to work. I will keep on experimenting and if I find anything I will update this entry. In the meantime, any tips from others who might have done their own experiments would be really useful.
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Peripheral neuropathy
by faylemv- 1 follower
- 2 replies
- 718 views
I would just like to share something that helped me with the dreadful peripheral neuropathy I experienced whilst having chemotherapy I used warming oil and fingerless gloves which are marketed to help with arthritis. I also used it on my feet and wore socks underneath slipper socks and slippers 😊
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Folfirinox..how many rounds?
by taoofpooh- 1 follower
- 9 replies
- 5.5k views
Hello everyone. I would like to hear from anyone that has completed 12 rounds of folfirinox then at some point later had further rounds. Or from anyone that has completed 12 rounds then requested more but been refused. I completed 12 rounds in Nov 19, have had no treatment since and am now requesting more fol from my Oncologist who seems quite reluctant to offer it, citing increased neuropathy and chances of sepsis as a risk ( I have inoperable PC). I have stated I am willing to take my chances. Any advice from your experience would be grateful. Thanks everyone.
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Referred pain
by faylemv- 0 replies
- 326 views
I was diagnosed with stage 4 pancreatic cancer last July and have secondaries in my liver and lungs. Around the time of my diagnosis I had agonising referred pain in my thorax and liver area. By the time I’d finish 12 rounds of chemotherapy in February my breakthrough pain was well managed but over the last few days the pain has returned, especially in my thorax. I’m scared that the cancer is getting worse and that I won’t get to do some of the lovely things that I have planned post lockdown. Has anybody else had pain returning so soon after finishing chemotherapy? I’m due to have a scan at the end of May followed by a telephone consultation with my oncologist a week late…
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Distal pancreatectomy and splenectomy
by Daisy1112- 3 replies
- 648 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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FOLFIRINOX Side Effects
by diane- 2 replies
- 972 views
Hello Everyone At the beginning of the year my husband was diagnosed with Inoperable Pancreatic Cancer, 5.5cm tumour. He started 12 rounds of FOLFIRINOX Chemotherapy last Wednesday, 3rd February. Since the chemo, he has suffered increasing stomach pain with excess wind, bloating and burping. These were the symptoms prior to diagnosis which, prior to chemo, had been controlled with Morphine and Paracetamol but they are now back with a vengeance. He usually manages a small breakfast but can eat little for the rest of the day. Partly due to the pain but also knowing as soon as he eats the pain will get worse. Has anyone else experienced this and if so do you know …
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Nano Knife for Stage 3 inoperable PC
by Nellie656- 3 replies
- 12.2k views
Hi, I'm new to this forum but have had email discussions with the specialist nurse. After recent treatment she has asked if I would share my experience on the forum. So here goes, hoping this gives someone somewhere a little more hope. I was diagnosed with Stage 3 inoperable PC on 29th June 2017 with a life expectancy of 10-15 months. Great news the day before a Baltic cruise. I started a course of chemo, Folfirinox on 1st August 2017. Every 2 weeks. Having had Breast Cancer in 2011 that chemo was like a walk in the park. After 4 sessions the scan showed a great shrinkage from 5.9cm to 4.9cm. I had 2 more sessions and then they decided on a course of Radiotherapy. I wa…
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Side effects of Folfirinox
by Grace15- 1 follower
- 3 replies
- 2.8k views
Hi, my mum had her first chemo session two weeks ago (Folfirinox), ever since she has suffered with debilitating nausea, diarrhoea some days and extreme fatigue. She’s not vomiting, but she’s having to lie down all the time. She’s not eating much and at the moment and she can’t tolerate the ensure drinks. She’s lost a lot of weight and can’t afford to lose anymore. We have been in touch with the hospital and tried different anti sickness medication, but nothing seems to work. She’s tried domperidome, ondansetron, cyclizine and Levomepromazine. She's due her second treatment this week and I really don't know how she's going to physically tolerate it. We have got an appoint…
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Reaction to Folfirinox, reassurance needed please.
by Clare0282- 3 replies
- 3k views
Hello everyone, I'm so glad to have found this forum, it seems like a very supportive place to be when you or a loved one is going through pancreatic cancer. My mum is 74, super fit and active and puts me (her daughter, 38) to shame with how energetic and healthy she is. After suffering with jaundice in early July, she was diagnosed with inoperable pancreatic cancer as it occludes major blood vessels. The tumour is about 7cm but it hasn't spread to her lymph nodes. She had a stent fitted which worked wonders for her jaundice and shes been taking creon with every meal. She had 2 CT scans, 5 weeks apart and we were very happy to find out it hadn't grown in that time.…
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Advise and support needed
by Leannboscarini575- 1 reply
- 2.6k views
My dad was diagnosed in July 2020 with a 7cm mass on the neck and body of his pancreas. Non operable due to It invading his aorta, He has been given a timescale of 3months to a year Depending on treatment. It is still classed as localised and hasn’t spread. Since his initial diagnosis which was 7 weeks ago we have been doing alternative therapies as we knew we were in for a wait for biopsies and consultations. He takes daily supplements, juices many times a day, distills all water that goes in his body, does coffee enemas and has CBD oil. He has been well, but now he has to make the decision if he wants Chemotherapy or not. I’m worried about all side effects and risks inv…
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Newbie - Whipples upcoming, inconclusive biopsies
by angelina27- 1 follower
- 8 replies
- 3.8k views
Hello everyone, Finally plucked up the courage to register onto the forum. My backstory is: I started having acute pancreatitis from September 2019, which progressed to chronic pancreatitis in April, and after suspicious mass on my pancreatic head was discovered via 2 x MRIs, I had an Endoscopic biopsy, but the results were inconclusive. Following the repeat biopsy, and another inconclusive result, my consultant and his team have recommended I have Whipple Procedure. I have been in total agony since March 2020, from aches, pains, weight loss, nausea and vomiting. Almost grateful for lockdown as I have not been great company! So now I see an end in sight with Whi…
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First folfirinox experience
by Mo2020- 1 follower
- 4 replies
- 3.6k views
Hi to everyone on here. I am new to the forum and am struggling a bit to find my way round. I have found all the comments on here really useful to me and certainly very inspiring. I am really looking for a bit of advice. I was diagnosed with PC in April and was lucky enough to be able to have Whipples Surgery, which happened within a month. I am now 5 weeks post surgery and starting to recover. My biopsy results were very good, showing the cancer had not spread. However, the oncologist has recommended i have chemo, Folfirinox, to lessen the risk of it returning. Given my situation (I know I am very lucky that my PC was caught so early) I am reticent about having F…
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First folfirinox experience 1 2 3
by kate2101- 70 replies
- 97.3k 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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Recently diagnosed and concerned about surgery and chemotherapy
by FishNChipPapers- 7 replies
- 6.9k views
I have recently been diagnosed with early stage (3cm tumour) pancreatic adenocarcinoma in the tail of my pancreas. The tumour was first identified in January following a routine CT scan. A sub total pancreatectomy and splenectomy has been recommended but due to Covid-19 it's not clear when my surgery might be (I have an appointment on Friday with an anaesthetis in the pre-assessment clinic but the surgical team are unable to say when the surgery might be.) Due to the potential delay I was offered neoadjuvant chemotherapy with FOLFIRINOX but decided against it as I as I suffer with IBS and diarrhoea is a common side-effect I was concerned about the more general impact o…
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Newly diagnosed - struggling with chemo
by Nighean- 6 replies
- 6.8k views
HI, I was recently diagnosed (November) with non operable pancreatic cancer metastazied into the liver. I was started on FOLFIRINOX in December and after the second cycle I am really struggling as I was badly hit with nausea. The pills from the GP are keeping it at bay but I am struggling to eat enough to stablise my weight which means the third cycle has been delayed. Anyone got any ideas on what might work to stop the downward spiral. Someone suggested Cannabis oil, but I understand that might interfer with the chemo drugs. Looking for any suggestions beyong the little and often that just isn't working for me. Thank you
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Newbie
by dave b- 8 replies
- 5.2k views
Long story short....had a bowel issue and started with a colonoscopy. My body didn't like that so they had to stop and send me for a CT. That revealed an area of my Pancreas that they wanted further checks on..MRI next and it shows a 2cm tumour in the head of the Pancreas. I was told on Friday 13th (Doh) that it is malignant. It wasn't a shock. For some odd reason I expected it despite my wife saying 'It'll be fine'. I see the specialist in Leeds this Friday although I shall ring tomorrow to ask whether it would be prudent to just have a telephone chat (unless I need any tests on the day...I don't imagine so, they must have 6 blood tests, 3 CT scans, MRI and most recently…
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Public v private information
by dave b- 2 replies
- 3.2k views
Hi As a newly diagnosed Cancer sufferer, I've been trying to get my head round lots of issues. One thing that struck me was that many pertinent questions are asked on here and the answers seem to end up being a private chat or email between a nurse and the question poser. I wondered if there was merit in publishing the answer(s) to the questions on the actual forum (provided the person asking is happy with that.)
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Pale stool/low bile production
by JohnDoe60- 1 reply
- 3.6k views
Hi Warning: I will be describing my Mom's stool. My Mom is still having pale stool despite taking a lot of Creon, and sometimes the stool floats. I think this has some relationships with her difficulty in gaining weight, despite eating much more food compared to my sister. If the stool sinks, then she must have had enough pancreatic enzymes to digest the fat, otherwise it would float (which sometimes it still is). Also, she no longer has diarrhoea problems. So I wonder why the stool is pale in color: (1) her latest scan (yesterday) thankfully shows no abnormality; (2) there is absolutely no obstruction; and (3) she is not jaundiced. She did her Whipple in May l…
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5 years post Whipple surgery
by mummy.may- 4 replies
- 14.6k views
Hi I am new. i wanted to wait until i was five years post op and still going strong. so here it is. Today is my op anniversary. hope i give someone comfort and hope.
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Newbie.
by Pete.- 7 replies
- 18.5k views
Hi all , thankyou for admitting me to your great group. A brief summary of where I am at :- After a couple of weeks of disturbed sleep through abdominal discomfort I awoke bright yellow on my 62 nd birthday on Aug 23rd 2019 . I got a next day GP appointment for the next day and was told to get myself to casualty straight away . I was admitted to an assesment ward and on to male surgical . I was released 3 weeks later after all the tests/ scans etc with a diagnosis of cancer head of pancreas which had blocked my bile duct causing the jaundice which was treated effectively with a stent . I have now had 2 lots of chemo (Folfirinox) out of a planned 12 . I am on the usual m…
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Eating regime
by Nighean- 0 replies
- 3.8k views
I have been advised to have a small meal every 2 hours, what I'm unsure about is how small is small. I need to build up weight and strength again before next chemo round but not having any appetite at all I find it quite difficult. Anyone else been put on this regime? did you get a recommended meal size? Thank you
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- 2 replies
- 5.5k views
Hi All This is my first post.My hubby has been feeling unwell since the second week in October. The first GP that we saw misdiagnosed gastritis. Hubby had loose bowel for one morning followed by tummy ache that was hard to pin down to one area. Whilst at the Doctors, we also talked about his heartburn and indigestion that also appeared from nowhere. That GP was too busy holding the door open to shoo us out whilst we were trying to get more advice from her. My hubby was in work but his boss was kind enough to lighter duty which brought him home earlier. As my hubby has a history of back pain it had been SIX years since he had requested a box of Tramadol of which he wou…
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Awaiting Treatment
by Myjourney- 0 replies
- 3.8k views
Hello I'm hoping that someone may be able to reassure me. I've been diagnosed with stage 4 pancreatic cancer that has spread elsewhere so can't be cured. I was given my diagnosis on 6th December and although some progress has been made, eg seen an oncologist I don't yet have a date for when my hickman line will be put in and when my chemo will start. I've been told I may have months or a couple of years so I'm really concerned for treatment to start as soon as possible. Is it normal to wait this long before treatment starts. I rang the hospital today and they are following up but the waiting is just awful. They have said that Xmas and new year hols have slowed …
