General chat
A forum for any other issues around pancreatic cancer.
313 topics in this forum
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Worried
by Sharky123- 1 reply
- 12.8k views
35yr old male. In good health. I initially went to the Dr 2 months ago with frequent urination, painful testes and lower abdomen. They think it was epididymitis or prostatitis and was put on antibiotics (trimethoprim) for 4 weeks For the last month I've been having upper left quadrant pain. The fisrt instance of the pain was acctually more in the upper middle abdomen, it was a stabbing pain which caused me not to sleep - this only happened once. Now the pain is more of an uncomfortable, dull aching sensation in the left upper region. This also occasionally radiates to the left side of my back. It comes and goes but I can always feel something. In the morning my…
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- 1 reply
- 11.8k views
Hi, this is my first time ever using a forum. My Dad was diagnosed with pancreatic cancer 5 months ago, he is now on a chemo treatment every two weeks to help keep further progression at bay. When he was diagnosed he was told he didn’t need to worry about his diabetes management and eat/drink what he fancied. Recently his glucose levels have been spiking and he is getting mixed advise from diabetes nurse and doctors as to whether he needs to manage his glucose or not. What are other people’s experience? Does he need to go back to managing his diabetes? Thanks in advance, any advise or learning about other people’s experience would be really helpful 😊
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A new Forum here?
by WifeampMum- 14 replies
- 24.5k views
Hi all I thought I would stick my neck out here and suggest that PCUK provide another forum on this site, to be called “Worried about possible pancreatic cancer”. The reason for my suggestion is that it would be easier for such worriers to find relevant information and mutual support. Also I don’t feel that the forums that these folk normally use (“General chat” and “Patient experience”) are particularly appropriate. I don’t mind owning up to the fact that I cribbed this idea from the US site Cancerforums.net https://www.cancerforums.net - which has its own “Worried About Cancer Forum” as well as a “Pancreatic Cancer Forum” This is its Welcome Page, whi…
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Not feeling well at all and very worried.
by Matthewr73- 6 replies
- 16.9k views
I will try and keep this as short as possible and hope you don't mind me being here! I'm 44 years old from East Sussex. In Oct 2016 In Jan started with upper stomach pain and right flank pain and still have it. In March i started loosing weight and i've gone from 22 to 14 stone. In March nausea 24/7 started and still have. In March upper left side back and shoulder pain started and still have. In April dizzy spells started which have now progressed to constant 24/7 for 18 weeks solid now. In April foul taste in mouth occasionally which is getting more constant and no matter what i do i can't get rid of it. In April stools turned light colour and u…
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Article on Research into Long term surivors
by Quickasyoucan- 0 replies
- 10.7k views
I hope it's okay to post this. I found this interesting http://www.smh.com.au/national/health/scientists-discover-neoantigen-that-mimics-infectious-disease-predicts-longterm-pancreatic-cancer-survival-20171108-gzh8y4.html There is a lot of research being done here in oz into cancers with poor outcomes including brain and pancreatic cancer
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So frightened
by fifi- 2 replies
- 14k views
Hi everyone. Not sure if this is the right place to post this as I am new here. I've been having these worrying symptoms For 2 months now - loss of appetite and consequent weight loss, change in bowel motions ( frequent stools), and occasional nausea, strange feeling in stomach. At first I suspected bowel cancer but my colonoscopy was clear. Then after an emergency visit to A& E for the pain/nausea I was given a CT scan of the abdomen as I was convinced it was pancreatic cancer. But that has also come back all clear. My bloods are all fine but my liver function test is slightly disordered with lymphocytes slightly down and GGT at 63. I still can't get pancreatic canc…
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stomach pains after eating
by gman- 1 reply
- 14.8k views
I had the whipples procedure in feb this year now I am coming to the end of my chemo but for the last two weeks I have been getting terrible stomach ache after eating has anybody had this symptom?
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Improvement in 5 year survival in England
by WifeampMum- 1 reply
- 13.8k views
Hi All Some great news has just been posted by Pancreatic Cancer Action. Pancreatic cancer survival rates in England have now increased to 7%, the biggest change in nearly 50 yrs! Here is what Pancreatic Cancer Action say about it on their website http://panact.org/survival 'Newly-published statistics from the Office for National Statistics shows an increase in pancreatic cancer survival rates in England. The five-year survival rate for the disease has moved from 5 to 7 per cent in England in just one year. This is very encouraging news for all those affected by pancreatic cancer. “At first glance, this may not seem like a substantial increase. However, when …
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What shall I do
by diane- 7 replies
- 20.8k views
I recently had a CT scan followed by a endoscopic ultrasound of my Pancreas.This has shown that I have multiple cycsts and an enlarged pancreatic duct (currently 7mm). The surgeon believes that because of this there is a 50% chance that I will get Pacreatic cancer and recommends a total pancreatectomy (and splenectomy). This would result in my becoming Diabetic type 1, and I would require lifelong enzyme and antibiotics replacement. Alternatively I could opt to go for a surveillance approach by having 6 monthly CT scans bearing in mind that if the pancreas become cancerous the scan may not identify this in time to then carry out the necessary operation. I was wonderi…
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Hospital Diagnostics Review 1 2
by Guest Marmalade- 35 replies
- 58.7k views
Hi all, Some may know me from other threads on here during my husband Louis' illness and after his death. It has now been 13 weeks since he died and I've had the first meeting with the District hospital responsible for his diagnosis. The diagnostic pathway in Louis' case took too long, caused unnecessary suffering and was peppered with system failures. I am obsessive about administration, getting copies, making notes of conversations etc and have been able to construct an accurate timeline. This has been invaluable during my discussions with the hospital both during Louis illness and beyond. My objective in communicating with the hospital MDT (Multi-Disciplinery …
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Cyberknife
by Kaye 19- 5 replies
- 19.5k views
Has anyone out there heard of cyberknife??? I have lots of info but no real testimonials or patient info!!
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Goldline
by Veebee- 3 replies
- 15.8k views
Hello.....After reading a good few threads describing people's treatment and the care services that are in place,it's been a revelation how care and treatments differ from area to area. Where we live we have the Goldline. It's a 24/7 phone line whereby patients or carers can access information or help. The GP surgery has a dedicated phone line for Goldline patients which is a godsend. Is this service nationwide or are there similar services in your area but under a different name? Vee x
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Any questions about research into PC?
by WifeampMum- 8 replies
- 22.1k views
Dear all, The PCUK Annual Summit is taking place next Wednesday (15th Feb). This year the title is: Inspiring Innovation, and I’ve been invited to take part in a Panel Discussion entitled: Transforming the research landscape. As the only carer/patient voice on the panel I’m very keen to represent not just me and my hubby but the wider community. So, my wonderful Forum Family, if you have any burning questions on the topic of PC research that you’d like me to put to the panel experts** please let me have them in a reply to this post. **The panelists include consultant oncologists, an expert in health economics and data, a professor of immunology and Anna Jewel…
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Going round in circles.
by Mkell- 2 replies
- 11.6k views
Hi all, I'm new to the forum. Lost my mum to PC last April after the system failed to join the dots . After being diagnosed with reflux, then diabetes, then jaundice , and finally , too late, terminal PC. Shame. Shortly before she died, I got told that I'd got anenlarged pancreatic tail,and that I would need further investigation . I'm 53 year old, very physically fit, non smoker, non drinker, regular gym goer etcetc. My story began on Christmas Day 2015 when I got a sharp stabbing pain at the top of my abdomen, below the left ribcage. Fast forward to now. I've still got that pain, only now it's more intense, generally with me24 hrs a day. It's radiated through to the lef…
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John Hurt
by Didge- 6 replies
- 14.4k views
RIP John Hurt. I remember him being diagnosed one month before Rob died. It seems that more and more people are being diagnosed unless it's just being reported more? Or is it my imagination? Anyone know the statistics of whether the incidence of pancreatic cancer is on the increase?
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Oral bacteria and pancreatic cancer
by HeatherDavis- 3 replies
- 13k views
Can oral bacteria increase the chance of pancreatic cancer? My grandfather had pancreatic cancer. My father had an infection in his mouth and when he consulted a dentist, he told that the count of bacteria in his mouth is more than usual. The doctor told that this can increase the risk of pancreatic cancer. We are planning to visit a dental clinic ( http://www.rootsonwhytedental.com/contact-us/ ) in Edmonton next week. What can be done to reduce the count of bacteria in the mouth? Please give some genuine replies and suggestions. Thanks in advance.
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Advice please for post-Whipple procedure & recovery at home
by susan191052- 15 replies
- 29.2k views
My husband was diagnosed with an adenacarcinoma of the pancreatic head on 27/10/16, we have since seen a consultant at our local specialist centre where they will be performing a Whipple procedure on 24/11. It is suggested that he will stay in hospital for 7-8days post surgery, and then come home. I have some queries about equipment we may need at home in the early days. Is a wheelchair or frame advisable. Should I get a raised seat for the toilet?, Any help and suggestions appreciated.
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Food and eating
by Fraz- 5 replies
- 13.7k views
Hi fellow sufferers, I got diagnosed just over two weeks ago with stage 4 pancreatic cancer, I'm fighting fit,49 year old,I've lost about two stone in the run up to getting diagnosed And getting skinnier by the day,I find eating quite uncomfortable as I'm always constipated with the drugs I'm on . Even using laxitives I'm lucky if I have more than two "bowel" movements a week. What should or can I do about this ?,I start cheemo shortly. Thanks in advance.
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How long did original diagnosis take after CT scan?
by chris3964- 18 replies
- 88.5k views
Hi Guys Before I start I just wanted to say how I admire much you and your families courage and determination in fighting this terrible condition. I myself have not been diagnosed yet but im currently being investigated. My symptoms in a nutshell are large greasy stools, intolerance to fatty foods and pain/discomfort in the abdomen particularly under my left rib (all symptoms have been present for 22 months) in In this time ive had 2 mris/mrcp of my abdomen and 3 sets of full blood tests( liver function,kidney function, full blood count, pancreatic amalyse/lipase, bone profile) and an endoscopy all of which are normal. After my second MRI was clear in July 2013 I …
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- 1 reply
- 11k views
Interesting YouTube video:
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Muscle weakness from dexamathasone
by Tina1969- 6 replies
- 15.1k views
Hi I'm new here My father is diagnosed with reacurent pancreatic cancer with metastasis in pelvis and t9 He has been prescribed dexamathasone to decrease the growth of the tumor He was on Dex for 3 months originally on 4mg per day for a month And 3 months on 2mg He has become really weak in the legs so he has been weened off now for 2 weeks He can barely stand The fluid in his limbs has increased a lot If he stands for more than 10 seconds he's legs give in and he faints Without remembering how he got onto the floor He kidneys are not functioning well Neither is his liver after 2 rounds of chemo Abraxane was the new drug which did the damage to his liver …
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Canabis oil treatment for cancer
by Tina1969- 1 reply
- 12.7k views
Hi can anyone shed some light on treatment with canabis oil fir pain relief
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recovery after a whipples
by jennie62- 2 replies
- 10.5k views
I had a whipples 4 years ago for pancreatic cancer. I was doing well until last September my tummy started to swell no matter if I just had a drink or food. before the operation I was going to slimming world as when I started in 2011 was a very big lady 17st 7 lb and by 2014 I got to target by losing 7st. but last September I stared putting on weight but I am still a size 12 but my weight is saying I am 13st. 2 months ago I started on the Creon at the moment it is hit and miss weighed my self on last Thursday was 13st and today Tuesday 12st 8 this is what is happening all the time. I feel so uncomfortable all the time to be honest if I don't have to go out I stay in m…
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- 23 replies
- 26k views
Hi all, the strange thing is I often don't know what I am looking for whether it is just for a discussion, actual support or answers to questions that there are none for. I'll start with a brief synopsis. I was diagnosed in February this year after two years of various concerns which included removing the gall bladder and dramatic weight loss. It occurs to me that if I had been to the GP with all my symptoms at once it might have steered them towards a diagnosis sooner, e.g. the high sugar count I had actually got the GP to recommend loosing weight to ward of type 2 diabetes ( if only they knew then 90kg down to 66kgs). I have just had cycle 11 of a 12 cycle folfinox, …
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Local Forum?
by OldShep- 5 replies
- 13.2k views
Morning All, I am trying to help my wife through pan can diagnosis, treatment and now the long term after-effects of Whipple and chemo. One thing that would be useful and I am at a loss to know how to accomplish, is to make contact with people in our area who have undergone the same treatment to share knowledge & ideas. I thought about setting up a new website/forum but that seems OTT when Pan Can Uk has all the infrastructure already in place and could provide the obvious gateway - the last thing I want to do is create yet another place that people have to find and monitor as a separate entity. It may well be that Pan Can UK offers such a facility alrea…