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    1. News from Pancreatic Cancer UK

      Read the latest updates from Pancreatic Cancer UK and how you can help us
    2. 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).
    3. Family, friends and carers

      A forum for family, friends and carers of pancreatic cancer patients
    4. Treatment & side effects

      A forum to focus on treatment related issues and side effects from treatment
    5. Advanced pancreatic cancer

      A forum for advanced pancreatic cancer issues
    6. General chat

      A forum for any other issues around pancreatic cancer
    7. Coping with loss/ Memorial

      A forum for people to support each other after the loss of a loved one
    8. Ask the nurse

      Take part in live Q&As with our Pancreatic Cancer Specialist Nurses
  • Recent Posts

    • Sandyvon
      I agree that you should talk to your doctor. After my Whipple surgery, I only took one creon 10 pill with my largest meal each day. Could it be that you are taking too much creon which is causing the diarrhea?    Good luck with your continued recovery. 
    • arty
      I'm happy that you are one of the lucky ones who had the operation. My wife occasional has diarrhoea and takes some tablets prescribed by her consultant to stop it. If you haven't already spoken to your doctor, i would suggest you do so ASAP because if you lose too much weight it may affect if you have chemo. 
    • Barbara Burkett
      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. 
    • PCUK Ellie
      Hi RDS, I'm sorry no one in a similar situation has yet seen this. When will you be having your PET-CT scan?    There's information on our website about different tests that might be run to determine what's causing symptoms. If you have any questions or worries, please do get in touch with the specialist nurses on our Support Line. They'll be happy to talk to you about your symptoms, what might be causing them, and how they can be managed by the pancreatic enzyme replacement therapy you're taking. You can call 0808 801 0707, or get in touch by email.    I hope someone with personal experience will respond in time - please keep us posted if you'd like to?
    • Sandyvon
      After my Whipple surgery, I was monitoring my blood sugars as I was at risk for diabetes due to the surgery on my pancreas.I continued to monitor my blood sugar,  my temperature, and my blood pressure when I was taking the Modified Folfirinox chemotherapy. After chemotherapy, my blood sugar was elevated for a few days but returned to normal.    i don’t have a medical background but your uncle’s reaction to chemotherapy must be considered a rare occurrence due to his weakened pancreas. 
    • RDS1992
      Hey everyone,   Just looking for some general advice and personal experiences. I was diagnosed with pancreatic exocrine insufficiency back in October 2020 and was given enzyme replacement medication to sort that out. Problem is I am still suffering with terrible  nausea and upper abdominal pain. I do not have chronic pancreatitus etc as my pancreas structure looks okay from my MRI scan and bloods okay so my doctor has put me forward to a PET-CT scan. Now in 2015 I had a carcinoid tumour on my appendix so he is wondering if there may be one growing inside my pancreas to stop the enzymes being released if that makes sense. Has anyone has the same sort of scenario at all?  Thank you all!
    • LisaEdge
      I am hoping to find others with a similar experience,  as we tragically list my uncle recently. The cancer was discovered last November,  and he was not offered the whipple. He went through his first round of chemo, but began to find his sugar levels changing and after a blood transfusion in March had mild hypo. He lived alone and luckily we found him. He then began a new chemo in July, but his blood sugar levels were all over the place. He was becoming thin and weak, and the combination of medicines were not helping. He was then put on insulin, but a week later lapsed into a coma over night. He had seizures and passed away with sepsis 4 days later. We are devastated as we feel that he still had a battle ahead and maybe longer with us, but the lack of advice with his rapid change in blood sugars seemed rather unimportant to the doctors and we had no idea of its effect. Has anyone else had any experience,  as we cannot find much about this. Is this common? Thank you. 
    • Nat
      Thank you both. It’s so difficult to know what is normal during covid times especially. But both replies really help, so thank you for taking the time to reply.
    • Lottie35
      Thank you so much everyone for your replies and kind words.  It helps me so much.  Mum is still really stable and doing well 5 months on.  We are having lots of days out and enjoying time as a family.  We went to see the Consultant last week for a little more clarity as I was struggling to accept things with mum being so well.  However, it is still a bleak picture.  He was very straight with us, as mum asked him to be.  He advised another scan would not make any difference as it wouldn't be good news.  Pancreatic cancer and 99% sure mets to lungs from scan results and CA19-9 being so high (83000). They didn't expect mum to make any recovery at all, so the fact that she is here now is amazing. The stent is obviously working well for mum. The prognosis on hospital discharge was less than 3 months. Each day that mum is well is a blessing.  I am dreading what's to come, but taking each day at a time.    
    • Borobi
      My husband waited about that long in January 2019 at a major London teaching hospital with excellent cancer services. I’m sure it would be shorter if you paid, but although it’s incredibly stressful at the time and horrible to wait I don’t think in the long run it makes any difference. Just try & do some nice things to distract yourself. Wishing you all the best with your treatment journey. 
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