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First time I've had trouble getting Creon for quite a few months. Anyone else?

On October 12th my amazing husband went into hospital with suspected gallstones. He has always been fit and healthy and just 2 weeks before going into hospital we were enjoying an amazing holiday in the Dominican Republic. he was diagnosed with pancreatic cancer within 12 hours of going to hospital. We were so shocked, our heats were broken. We couldn’t believe that this was happening, as I’m sure everyone else who is dealing with PC feels. 2 weeks later we were told that it wasn’t good news, the cancer was to far gone. There was a possibility of chemo but that would depend on a biopsy result. If he could have chemo our prognosis was 6-12months, if not 6-8weeks. Our world was shattered but he was always saying he was going to give it everything he had! We made plans, we had tough conversations and we were brutally honest with each other. A week later, the biopsy results were back and there was nothing to be done. We had to go home and enjoy our time together. We came home on the Friday and sadly on the Tuesday morning my darling husband passed away, he was 55. I don’t know how I will ever get over losing him. I miss him everyday. We had so much planned in our lives and I feel robbed. People say it gets easier but I just can’t see how. He was my everything and I’m so lost without him

I am sorry to hear of your diagnosis, but thought I'd reply. Like my brother at 74 he had no 'symptoms' only an itchy skin rash. His bloods were his only warnings. By 3 months through the examination processes ie ct scan he remained fit and active. No one really can predict as circumstances can be so different from what I read and comparing it to my friend who had PC also. He became jaundiced just prior to his admission into hospital. He had the Whipple. He took 3 good months to recover from that operation..he did well and was back on his feet as himself. He did so well for 20 months having a near normal day., but sadly the C spread. I can only say adhere to your consultants recommendations but look forward every day and to do what you feel you can do. My female friend 70wanted no surgery or chemo. She coped well -following advice - some days feeling so tired but had a year of being able to get up and on with her social life. It's so hard to predict time with any cancers I think. This site is so informative.

I had a full men's wellness check last November in Thailand and discovered my CA 19-9 was 200+ On returning to the UK in February I told my doctor and was fast-tracked for a CT and MRI. A tumour was found but because of my age, I refused chemo and surgery I did however agree to a 5-day intensive course in radiotherapy which I am recovering from to be reviewed on 20th December. Providing the results are not devastating I plan to fly back to Thailand in early January. My question is how long have I got once the symptoms start before I would be unfit to fly back to the UK. At the moment I have no symptoms apart from tiredness from the radiotherapy treatment. Any PC-UK member's timeline experiences would be very helpful. Peter

Hi Alison, I have just joined the forum and read your post. My wonderful husband was diagnosed with PC in October. He too was fit and healthy playing football and walking etc. Sadly we were to late with our diagnosis and my husband passed away just over 3 weeks later. I hope that your husband is ok and you are too. It’s such a horrible time for you both x

If you or someone you know has pancreatic cancer, planning for the future might feel difficult. You may have heard the term ‘palliative care’ but feel unsure about what this means. Hosted by specialist pancreatic cancer nurses Simon and Rachel, this webinar will help you understand what palliative care is, what you can expect from it and who is there to provide palliative care and support you towards the end of life. We will also discuss planning for the future and what good end of life care should look like, with time for questions too. This session is for people with pancreatic cancer and their loved ones. We appreciate these discussions may be upsetting & difficult, and that you may wish to stay for the section on palliative care but not the section on end of life care and we’ll make sure you’re able to leave before this section if you wish. https://www.pancreaticcancer.org.uk/support-for-you/webinars/palliative-care-for-pancreatic-cancer-webinar-3-december-2024

Hi everyone. I am really struggling to come to terms with what's happened. My husband ( together 28 years and married for 24) has always been very fit being a cycling obsessive, we've always eaten healthily, no family history of pc, he's not a big drinker and never smoked. He's also only 57. He was given a diagnosis of probable pc on October 14th. I say probable because he still hasn't had a biopsy due to him having lost weight and not being well enough ( there is a slight possibility it could be neuroendocrine ). The speed this has happened has been truly shocking. He started feeling a bit 'off' about 6 months ago ( but didn't say anything me at that point). By mid July he was complaining of chest and leg pains and shortness of breath. GP sent him to A&E. Did a few blood tests, and ECG and chest scan which found a small clot. Sent home with a follow up scan booked for September. Had been worried about heart disease ir a DVT but told he was ok. Carried on as normal and went on holiday to Croatia early to mid September, swimming in the sea and walking round the sights. About 2 weeks after getting home things take a dramatic turn for the worse. His legs are swelling and he can do longer ride his bike. GP again sends him to A&E only to be told it's muscular pain and to go home. Still thinking it's something to do with his legs, we pay for him to see a vascular surgeon. This is on October 9th. Ultrasound confirms that his veins are fine but as he is slim from all the cycling, checks hus abdomen which shows enlarged lymph glands. He has also started having bad night sweats. Private dr has contacts at the local hospital and arranges for him to be admitted as he's concerned about possible lymphoma. in hospital finally gets a CT scan of his abdomen and we get the dreaded phone call on the 14th.. It was something we were not prepared for and new little about at that point. It still takes over a week for the specialist to get back to him and a further week for an appointment. By this tine, he has deteriorated rapidly and lost weight and has been readmitted to try and get on top of his pain. He is now back in for a third tine as he is really struggling to eat and put weight on for a biopsy. I am struggling to understand hiw we can go from cycling at least 100 miles a week to this in such a short period of time. I am just not prepared to lose him so young. I've only recently come to terms with losing my mum suddenly too with pneumonia (anniversary is later this month too). Reading other people's stories, I see my story is not unique. I was the one with health problems who was supposed to go first, who was the looked after one. I am beyond heartbroken. Many thanks to Rachel, the specialist nurse here for her support.

Hello France. Don’t despair! It’s not that no one wants to help it’s knowing how best to help. It seems you’re doing all you can by badgering your GP but maybe you should make stronger representations to your surgery than badgering? By posting on this forum you obviously believe your symptoms point to a problem with your pancreas. Have you expressed this concern and pushed for a full exploration of the area? You say you’ve had an ultrasound. Results are usually available within 2 weeks so the readings from that will hopefully guide your GP towards further action. Maybe posting on here again when you get the results will enable other members to help with what to request further from your GP. Your circumstances are incredibly stressful and my heart really goes out to you.X

I guess no one wants to help

Afternoon all We have launched a new support service for those who have recently been diagnosed with pancreatic cancer. Our Newly Diagnosed Video call can help you understand what is happening (whether you have pancreatic cancer or you are caring for someone with pancreatic cancer), you can ask any questions you have and nurses can help guide you through the next steps. If you would like, you can invite your loved ones along to the call too. It is your choice what we prioritise in the video call, but here are some suggestions: We can help you understand more about your/your loved one's diagnosis We can answer any questions you have We can help you navigate the healthcare system We can discuss what to expect and plan next steps For more information, and to book your call, click here Nadia x

Hi I have been badgering my GP since January 2024 as I have had pain under my left ribs. I have lost 2 stone since then and become extremely exhausted falling asleep after meals. I am type 2 diabetic and have pain after I have eaten. I managed to get a 2nd opinion in September and they ran some bloods. They discovered I have high amylase levels and low trypsin levels. The low trypsin means I'm not digesting food which is causing the tiredness. I've just had an ultrasound which actually hurt my stomach. What should I expect now? Sorry this is long winded I just needed to get it all out I'm a 43 female no family history and on my own with 3 children so no one to talk to, oh and I'm going through redundancy so having a rubbish time

Rowena , it is great to hear an encouraging post . I am pleased that you updated us all on your progress. As it gives others hope .

Hi @Luke1971 Oh that is interesting, I will pass that over, thank you

My pleasure. It's also worth saying that I walked into a pharmacy in Spain last month, asked if they had any, and walked out with some - easy as that (although it wasn't cheap). That tells me that the "manufacturing issues" situation might, hopefully, be improving. The packaging and name was different ('kreon 25.000U cápsulas'), but it was Creon. And my oncologist last week said that a number of his patients were reporting a gentle improvement in the shortage, even if it's only temporary. Fingers crossed.

Hi @Luke1971 Thank you for this, and for raising it with your MP Nadia

I raised this with my MP recently and received the following response. The new Government has inherited ongoing global supply problems that continue to affect medicine availability in England. We know how frustrating and distressing this can be for patients, and we are working closely with industry, the NHS, manufacturers and other partners in the supply chain to resolve issues as quickly as possible to make sure patients can access the medicines they need. There are around 14,000 licensed medicines, and the overwhelming majority are in good supply. However, medicine supply chains are complex, global and highly regulated and the NHS does occasionally experience temporary shortages of some medicines. There are a number of reasons why supply can be disrupted, many of which are not specific to the UK and are outside the Government’s control; these include manufacturing difficulties, access to raw materials, sudden demand spikes or distribution issues, and regulatory issues. Medicine supply issues are global in their nature and, while we cannot always prevent them, we have a range of well-established processes and tools to manage them when they arise and to mitigate risks to patients. There is a team in the Department that deals with medicine supply problems by working closely with the Medicines and Healthcare products Regulatory Agency, the pharmaceutical industry, NHS England and others operating in the supply chain. We also work with partners to ensure alternative treatments are available to patients until their usual treatments are back in stock. At the time of writing, we are aware of ongoing intermittent supply issues with pancreatic enzyme replacement therapy (PERT), including Creon capsules. These have been caused by limited supplies of active pharmaceutical ingredients and manufacturing capacity constraints. The supplier of Creon has advised that it expects to have regular supplies released each month for the remainder of the year. The Department is continuing to work with all suppliers of PERT products to help resolve the issues, expedite deliveries, source stock from other markets and increase production. We have also issued comprehensive guidance to healthcare professionals, which provides advise on how to manage patients while there is disruption to supply. This guidance is being kept under review and updated will be made as necessary. In addition, serious shortage protocols (SSPs) are in place for Creon 10000 and 25000 capsules to limit prescriptions to one month’s supply; this is to ensure that Creon remains available for those patients who need it. An SSP enables community pharmacists to supply a specified medicine or device with the patient’s consent and without needing to seek authorisation from the prescriber. The Department will continue to work closely with the manufacturers to resolve the issues as soon as possible and to ensure patients have continuous access to medicines. If any patient is concerned about their treatment, they should discuss this with their clinician at the earliest opportunity.

Hi. I had backache, fatigue in addition to acid reflux. I had been given a series of gastro tests to check what was happening. The tumour was initially shown on a CT scan. This was booked when the GP referred me as a result of the backache and fatigue. A month later a biopsy was taken which showed that the mass on the head of my pancreas was cancer. It was classified as stage 4. I am currently under palliative care. The team looking out for me are superb. They check in to see how I am and, post the clinical trial handover back to my oncologist, I have three monthly reviews. Good luck with your diagnosis. If you have anymore questions please ask.

Hi Rowena, what a lovely post to read, I’m so very happy for you. Can I ask what test you had to initially get the diagnosis please? I’ve had pain, low faecal elastase and a few other symptoms for some months now, and have this gut feeling that it’s serious. If I could go to my GP and just request a test that would rule out cancer it may put my mind at rest. Thank you for posting with your update, sending love

Hi. As some time has passed I thought I would give an update. I am now back at work full time and enjoying some fabulous holidays. I use “Insurewith” for European travel insurance as they cater for travel with cancer. I continue to have 3 monthly CT scan and blood tests. I am so grateful to still be here. I am not up to full strength yet, but the post treatment symptoms including nausea is getting better. The results from the Emerald trial will be peer reviewed at the end of this year and hopefully published spring 2025.

PERT shortages are continuing to impact people across the UK and it's more important than ever that we let people affected know that we are here to support them. To reach everyone affected, we need your help. If you have been impacted by the PERT shortages and you would be comfortable sharing your experience with the media, please get in touch: https://www.pancreaticcancer.org.uk/get-involved/share-your-story/ If you have been affected by these shortages and need support, please get in touch. You can speak to a specialist nurse on our Support Line on 0808 801 0707 or via email at nurse@pancreaticcancer.org.uk.

It’s not a pity party but if you want to have one I will come along and support you. Whatever you feel you should: We have been robbed. Robbed of a lifetime of what could be and more happy memories but, we can’t look like that. We can’t think of what we could have only what we did have. And that is what we should cherish. As hard as it is. We need to look at what we had. And try not to look at what might’ve been: i am struggling to do this. It’s alright to cry. To mourn over the loss of my Mum I have given myself permission to that. You should, if iou can try it too the firsts are HORRIBLE. For me, may not be for you. I’ve felt so I well, fatigued and my birthday drained the life from me for days: you just have to lie down and take it. The fatigue is real. What you feel is real. hope is a wonderful thing. Hope tomorrow will be better. just keep putting one foot toward. Hope can do great things. keep hoping for better days. They will come: here if you need to talk

Sending you love and positivity