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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, symptoms & side effects

      A forum to focus on treatment related issues, symptoms 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. After pancreatic cancer – coping with loss

      A place to support each other after a loved one has died, whether they were a partner, friend or family member. Grief can affect people differently, so please be kind and respect others' views on how they choose to cope.

  • Recent Posts

    • Luke1971
      Update to the above post: I just spoke to my local pharmacist, who repeated the governmental statement almost verbatim, but added one crucially worrying piece of information: these issues are expected to last until 2026.
    • Luke1971
      Thanks for all your responses. Following its appearance in the national news (https://www.bbc.co.uk/news/articles/cy737x4rry1o), I wrote to my MP about the issue too, and he submitted a Parlimentary question. The response (nothing new: don't panic, it's complicated, it won't be forever, there are alternatives) was as follows:   We are aware of supply issues with three pancreatic enzyme replacement therapies: Creon 10,000 gastro-resistant capsules; Creon 25,000 gastro-resistant capsules; and Nutrizym 22 gastro-resistant capsules. We understand that these are due to limited availability of active pharmaceutical ingredients, and manufacturing constraints in producing the volumes required to meet demand. The Department has issued guidance to healthcare professionals regarding treatment of patients while there is a disruption to the supply of these pancreatic enzyme replacement therapies. We are having regular conversations with the suppliers of these products to ask that they expedite deliveries and increase production forecasts, and to confirm that they are taking action to address the root causes of the issues, to ensure continuity of supply. We are also working with specialist importers to source unlicensed imports from abroad. Whilst we can't always prevent supply issues, we have a range of well-established tools and processes to mitigate risks to patients. These include close and regular engagement with suppliers, use of alternative strengths or forms of a medicine to allow patients to remain on the same product, expediting regulatory procedures, sourcing unlicensed imports from abroad, adding products to the restricted exports and hoarding list, use of Serious Shortage Protocols, and issuing National Health Service communications to provide management advice and information on the issue to healthcare professionals, so they can advise and support their patients.  
    • Ellen9
      Good news - just heard today that my tests show no pancreatic or liver cancer. A great relief, and I will continue to pray for those who are not so fortunate in their diagnosis.
    • Thesea
      It's difficult isn't it?  If tests aren't done / aren't done promptly, then there's a lot of worry.  And yet anticipating tests is an anxious time too.  But good to have them done.  Wishing you all the very best and I hope liver results are reassuring. 
    • broju
      Hi Ellen9   So sorry to read of your anxiety.  This is indeed a good place to air your concerns and be assured of support and understanding. I wish you well and hope you will report your progress back here. All reports of symptoms, tests and treatments here help others on their journeys.  I think a great many folk read but don’t always feel able to contribute.   My very best wishes broju    
    • Ellen9
      Hello everyone, I'm anxiously in the middle of tests for pancreatic cancer after having lost over 10% of my body weight and having a new pre-diabetic blood result a few weeks ago. Had a CT scan and trans-nasal endoscopy last week - no results yet from the former but the latter only showed some stomach inflammation, no tumours or ulcers. But I have been called in for a liver MRI in a couple of days, with no explanation. I'm feeling frustrated by the lack of communication, and also frankly scared of why this additional test has been called for. I am immensely lucky to have a wonderfully supportive husband but haven't wanted to worry friends so just needed a place where I could share my fears and know they will be understood. Many thanks for reading this, and please don't offer guesses on what the tests might mean, I just needed to express my anxiety. Every blessing on your own journey.
    • Peter 55
      Thanks Ollie, that's  useful to know. I'm  ok at the moment though, just managed to commandeer South Yorkshire's  supply of 25000's thanks to the Boots search facility!
    • Support Team
      What dietary issues can I expect with pancreatic cancer? What kinds of foods should I eat, and what should I try to avoid? What is PERT and why is it so important for people with pancreatic cancer?   These are just a few of the questions that our expert specialist nurses are asked every day on our Support Line.   If you or a friend or family member has been diagnosed with pancreatic cancer, you might have these questions too – and others.   Register now to attend our free webinar on pancreatic cancer and diet on Monday 20th May at 6pm.
    • Ollie B
      Apologies for such a late response. Like both of you I've had periods where Creon 25000 were unavailable (it's happening again now) and I've been reduced to necking dozens of the 10000 every day. When this happened last year, a dietician at my hospital wrote to my GP and asked them to prescribe Nutrizym 22000 as an alternative. Apparently it contains the same enzymes as Creon. The GP did this and it was a really helpful stop-gap until the Creon 25000 became available again. I noticed that my GP surgery knocked it off my repeat prescription list at this point - it made me wonder whether it was more expensive than Creon. Anyway I'll be asking for this again whilst Creon 25000 is currently in short supply. Hope this help.
    • rhi
      Me neither Pbasi, I know how you feel 💔
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