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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Help with floating stool and weight loss
by JohnDoe60- 3 replies
- 8.4k views
Hi, My Mom had her Whipple 7 months ago and went through 12 cycles of Folfirinox which ended 2 months ago. She is now eating very well and quite a lot, but struggling to gain weight. She has been taking 36,000 Creon with meals, and for her weight (45kg), that would be the appropriate dose. Sometimes she takes 48,000 if the food is rather oily, like ribs, for example. However she has diarrhoea every other day, and to combat that, the doctor asked her to take 1mg of Loperamide in the morning and in the evening. She is mostly eating low-fat and low-sugar diet. The diarrhoea is controlled, but she still has floaty stools, although not to a degree of steatorr…
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- 14 replies
- 30.6k views
I’m attending my first oncology appointment next Tuesday 11th June to discuss possible treatment plans. Is there anyone out there with a 5cm x 3.8cm inoperable tumour who’s already gone through chemo, and has it helped?
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Intense pain
by newcopernicus- 1 reply
- 6.9k views
26 yo female here.I've had horrible abdominal pain.CA 19-9 is 98,CEA is normal.I'm having a CT tomorrow.Barium meal showed my stomach is bent,likely because of the tumor.I just really want to know,from your experience if there is any chance I can go through this without suffering this much.This is my biggest concern.
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- 2 replies
- 11.4k views
Hi, my name is Len and, after two months of scans, Jaundice and a stent fitted, I've finally got a six month Chemotherapy (Folfirinox) programme starting on 26th November. A 3cm mass that I would never have known about but for the Jaundice. I'm 73 years old but fit and active. Can anyone that's had similar symptoms and this course of Chemotherapy please share your side effects during chemotherapy please.
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Mom was Diagnosed with Borderline Resectable PC
by JohnDoe60- 2 replies
- 11.8k views
Hi, In 2010 I signed up to a Multiple Myeloma forum because my Dad was diagnosed with the disease. I was devastated and hoping that I would never ever have to sign up to another cancer forum. My Mother has been relatively healthy until she complained with some gastric problems in October 2018. She had been seeing a gastro specialist who told her that she had an enlarged bile duct. Fast forward to early 2019, I noticed how my Mom had become very thin and still complained about the stomach cramping. We immediately seek for a second opinion and the Doctor ordered some Abdomen USG and ERCP. There was a 3.5cm mass on the head of her pancreas, and some ill-defined node…
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Latest CT scan - conflicting result
by Desso- 0 replies
- 13.9k views
Got my CT scan results a couple of weeks ago. It is now 26 months since I stopped chemo before surgery in June 2017, and 2 ½ years since I was diagnosed with PC w/7 or 8 metastases in the liver. CT shows no sign of the cancer growing in my liver or around the tail of the pancreas where I had surgery. Only one spot/lesion at the liver is visible on the latest scan, 13mm which has been the same for the last 24 months. The smaller ones are not visible on this scan. There is an area just under the diaphragm and behind the abdomen that is of concern. A 15mm lesion was picked up at a PET/CT scan 4 months ago with a SUV of 5.8. This has now grown to 22mm, iow grown around 7mm th…
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Result worries
by Mohammad- 10 replies
- 18.9k views
Need help and advice 6 Mar 2019 16:33 Hello Ladies and Gentlemen, i am new to this forum and need some help and advice as very tense and emotionally devastated! I am 42 male and father of 4 children aged 1 to 13 ! My problem started with haepmotysis ( bleeding from mouth ) ! Went through many tests ( blood, endoscopy, Branchecopy, gastroscope, CT ) but till now they did not find cause of this . However , in Scan they found a mass in pancreace but they were not sure what it was ! They did another test weeks ago and I was waiting to hear from specialist the result , but today I got another letter to do an MRI in 10 days time ! Now confused and scared scared of what…
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- 0 replies
- 10k views
Hello everyone. Let me apologize in advance because I'm not diagnosed, however I'd like to get some feedback from people smarter than me. I'm a 23 year old male, diagnosed with generalized anxiety disorder and hypochondria. My pancreatic cancer worry started about half a year ago - in August 2018 I had a week long nausea, which wasn't related to food/sickness. It went away as suddenly as it came, however I, being the health anxious person I am, wanted to know the reason for it, so I went to my GP who ordered my an Ultrasound. Pancreas was seen clearly on it, and the scan was clear. That gave me some relief, but then the nausea happened two more times, once in Octobe…
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Some general advice please.
by taoofpooh- 1 reply
- 10.1k views
Hello. My name is Paul. 52 years old. Like many on here I was diagnosed with PC after a few GP visits for tummy problems, then suddenly a a few weeks ago developed jaundice and was taken into hospital where they did a CT scan and bloods which showed an inoperable mass on the pancreatic head and nearby large blood vessels. Following a MDT, I was called to say I would get an appointment to have an ERCP and bile stent put in to relieve the jaundice and then I would receive a letter for a meeting with the oncologist. My questions are what is the typical timescales people have waited for the ECPR/Stent and then meetings and treatment? Was the bile stent plastic or metal? Did…
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My life with pancreatic cancer
by rowlie- 2 replies
- 14.7k views
I sometimes feel a fraud when I read the stories of others who have suffered. In 2003 I was helping the good lady in the garden when I felt extremely tired. She accused me of shirking so I carried on. In the evening I suddenly felt extremely cold and no matter what I did I could not get warm. After a warm bath I went to bed and was still feeling cold. Within a couple of hours the bed linen had to be changed as I had sweated so much. Come the morning all was well. A couple of weeks later it happened again. When it became regular I thought oops. Time to see my GP. Checks, blood tests and the usual tests and I was called back. I can remember the GP's words. " You are either…
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Celiac plexus block
by Ozoda- 1 reply
- 9.5k views
Hello all, My mother has cancer in the tail of her pancreas with multiple liver metastasis. We were offered a celiac plexus block procedure to relieve pain. Has anyone with cancer in the pancreatic tail had the procedure, and was it helpful? Thank you so much! xx
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Nano knife for Stage IV PC. 1 2
by toodotty- 41 replies
- 61.1k views
Hi, The long awaited thread on Nano-knife for Stage IV PC. I have been doing quite a bit of research on this and I am seriously considering this as my next step. I have spoken to the Professor who is very positive about my tumours, "quite small and discrete so there should be no problem treating these. " I have also looked at the surgery option via Heidelberg, this is also a possibility but I am so concerned about the severity of the operation, not so worried about dying, more about the quality of life afterwards, it is so invasive and still only semi-successful so I am quite wary of this at the moment. But I have German relatives and Heidelberg is the place to go …
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Any information would help
by Week20- 5 replies
- 14k views
Hi all I was diagnosed with inoperable adenocarcinoma. stage 3 tumour as it involves the vessels locally at the begin of dec. I have had a stent fitted and hopefully starting chemo in the next 2weeks. My head is all over the place and my mind running a million miles an hour. Any experience, advice or knowledge good or bad is needed Thanks x
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Distal pancreatectomy operation
by Lesfleur- 3 replies
- 11.6k views
Hi there, This is my first time posting... I have been undergoing investigations for a cyst on the tail of my pancreas, they have found that it is precancerous and have recommended that I have it removed, so I appreciate I am in a very fortunate position because they have found it early. However, I was just wondering if anyone else had been through something similar? It is a distal pancreatectomy and splenectomy also. I am nervous about recovering from the operation. I am quite healthy otherwise and active and in my early 30s so know that that is good. I’ve had operations before for an issue with my hand but they were minor day surgeries. I am worrying most about si…
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Folfirinox Round 7 1 2
by toodotty- 40 replies
- 52.6k views
Hi my fellow Folfirinox travellers, I started round 7 on Friday having been kindly informed by Dr Doom that the side effects would be much worse this time and that I will probably lose the use of my fingers and toes. Thanks for that cheery news mister .... I am taking a much more upbeat approach; firstly I am not jaundiced this time around and I am feeling fitter than I have all year so should hopefully stand up better to this. Also as he has shown no particular interest in my side effects I am taking this as another standard statistic. He doesn't know that I am taking milk thistle to help with the side effects, and I have to say that my tingly fingers and toes are…
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Just started Folfirinox
by The_petal- 16 replies
- 27.3k views
I have just started Folfirinox (post whipple so no pancreas or spleen) so far it hasn't been too bad but I know the affects will ramp up as I go through the course (12 over 6 months). The problem I have is trying to keep my blood sugar levels within bounds, I only had a boiled egg and a slice of toast at breakfast ~ who feels like eating? - but before my lunch my BS was 16.5 which makes it difficult to judge my pre-lunch Novarapid dose before I have my homemade chicken and vegetable soup.
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Just diagnosed 1 2
by Theresa Upton- 28 replies
- 37.7k views
Hi everyone, I have just been diagnosed with metastatic pancreatic cancer. I am 58 years of age, have always enjoyed a healthy, active life style and until the beginning of August I was still climbing hills/mountains, enjoying holidays and just keeping busy. I started to feel very tired at the beginning of August went to the doctors and 'bang'. I have been told that I cannot beat this one because the cancer is in my liver and an operation is not possible. I find it so hard to believe that nothing can actually be done although I do hope to start chemo on Thursday with a view to prolonging my life. I know that I am my own statistic but I would like to think that someone…
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Just diagnosed very odd results
by Janey164- 0 replies
- 11.3k views
Hi my name is Jane , I’m 59, an experienced NHS nurse of 40 years and I have been diagnosed with secondary Liver mets, diagnosis 26/9/18 , having been well and no signs of illness at all, no weight loss no jaundice etc... Started with what I thought was Biliary colic over BH in August, FU bloods threw a curved ball LFTs a bit up and my CA125 (ovarian Marker] was raised, so Pelvic Ultra sound showed some fluid in Peritoneum , but all organs clear, Abdo Ultra showed mass in Liver in Left Lobe. At this stage sent to Gynae Oncologist. Ct with contrast 5 days later, result Liver a mets and Peritoneal deposits but no sign of primary. CT pancreas, Gall Bladder, spleen and al…
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Just my story....Michaela1.x
by Michaela1- 19 replies
- 31.6k views
Well an update, and even on a new page! What can I say.....came home feeling rotten and in pain not because of the chemo but still because of still feeling 10 months pregnant. With every movement/jar/bump, break at lights etc etc in the car on way home I felt was a personal attack on my stomach just for me....the things you think to yourself huh!? Had to go Drs on way home who did a little search and feel if you get me 😧😞 who thinks the constipation is higher up and an enema wouldn't really do the trick, however sent district nurse round an hour or so later just to try, it helped a bit, but because I'd done a home one the day before too, gave me bad cramps.....geez …
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CA19-9 importance?
by Michaela1- 4 replies
- 14.5k views
Hi guys, I was wondering if anyone can alleviate my fears over my rising marker scores from blood test? Basically at the beginning of treatment they were 1000 and something, after treatment one in went up to 2000 and summat, then 3000 and now previous to my 4th treatment it was 5050. The really heart breaking thing was whilst I had to be an inpatient for 3 weeks (escaped a week ago), my cancer specialist right hand woman told me my marker had gone done to 27, which was fantastic news and my wife and I cried with relief and joy. So to be told yesterday that that result was a mistake was gut wrenching!😔😕😦. I saw the printout for myself so it wasn't a consultant read mist…
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Patient View
by toodotty- 0 replies
- 10.2k views
Hi All, Having recently had a spell in hospital with a blocked bile stent, I was extremely shocked to discover that the hospital treating me did not have access to any of my medical records, which were held under a different NHS trust. This was especially problematic as it was the weekend and there was nobody they could ring. The A&E doctors were going ballistic as my blood test results were coming back with a poor reading especially for liver function. However, they were comparing the results against tests taken in March before my chemo started. I would expect some level of change in the meantime especially to liver function, but without the blood tests of the l…
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Battling to get treament 1 2
by toodotty- 39 replies
- 56.9k views
I am 55 years old, mother of two almost adult boys and wife to a devastated husband. I visited my GP in early March with annoying indigestion and weight loss, and despite numerous blood tests, 3 ultrasound scans and 8 hours in A&E, (who diagnosed constipation), nothing was found to be wrong. I paid privately to see a specialist and for a CT scan and was diagnosed with pancreatic cancer on the eve of Good Friday. By the following Tuesday, it was confirmed as having spread with 3 small lesions in the liver and a shadow on the peritoneum, so Stage 4 PC. On the 3rd of April, to try and cover all options, my darling GP referred me urgently to two specialist cancer …
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Wrong diagnosis?
by Michaela1- 1 reply
- 11.8k views
I was wondering if anyone could help me please. I am a 47 year old female with a 13 year old daughter and partner and I have within the last week been diagnosed with pancreatic cancer with lesions on my liver too☹ I am trying not to be in denial but could it be wrong? I haven't had a biopsy yet, but it is this thursday and they are doing a liver biopsy. I have so many questions! My symptoms were just really bad abdominal pain upper right side for about six weeks, it was much worse at night to the point it was waking me up. Dr sent me for an ultrasound and by time results came the pain was getting worse, I was off food and my belly was always swollen. She said I would need…
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Weight loss and not having chemotherapy
by suzyma61- 2 replies
- 12.6k views
Hi my husband Jeff was diagnosed with PC on Feb 14th of all days this year. It took 9 weeks for him to get the confirmation of this. He's lost lots of weight. He was 15 stone but is probably down to about 11 now. Had three bouts of chemotherapy gemcetiben but not consistent weeks as he keeps getting reactions which he has been admitted to hospital 3 times. This all started after the biospy. The cancer has spread. They said his organs have a lot of fluid around them. Back to see the oncologist soon I hope with another plan. When he gets over these infections he starts to eat again which pleases me. I think also after having chemotherapy the pain levels have gone down. The…
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Feeling frightened
by suzyma61- 2 replies
- 14k views
Hi, my husband was diagnosed with pancretic cancer on February 14th. It has been a very frightening time for us. When he had his biospy he was really ill afterwards and caught an infection. The cancer has spread to his lung and part of his spine. The hospital have offered him a clinical trial via iv. It is continuous with just a weeks break. Can I ask in people's experience,if they have had good shrinkage of tumour size and pain relief? I know everyone is an individual so just clinging on to hope at the moment. Thanks Sue