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In the absence of any replies, I'll share my experience in case it's of any use to anyone. The neuropathy and fatigue took a long time to go completely - about nine months - but go they did, and now (14 months post-end of treatment) I'm fit, working and happy. There can be light at the end of that tunnel, in case anyone's reading.

Hello all! Our webinars team has a new event coming up if you would like to join; Whether you’ve been diagnosed yourself or are supporting a loved one, join this free session on Tuesday, 20th May, 6-7 pm to hear from a dietitian and two of our specialist nurses. They’ll talk about common symptoms you may experience linked to your diet and digestion. You’ll learn why these symptoms happen and tips to help you manage them, including foods to eat or avoid. Find out more and sign up on our website now: https://www.pancreaticcancer.org.uk/support-for-you/webinars/pancreatic-cancer-diet-and-you-20may25

Hi Broju, Thank you so much for the info. We have looked at the Heidelburg but unfortunately they're at capacity Xxx

Hello nikki345 Really sad to read your post. When my husband was diagnosed he was keen to take part in any trials but sadly it was during Covid and many were curtailed. I believe there are now some taking place. Your brother might qualify for and hopefully benefit from one? Also, we would have explored treatment abroad, mainly in Germany had travel not also been curtailed. The Heidelburg University Hospital still seems to lead the way in PC treatment. It’s all worth exploring. xx

Hi all. My brother has just turned 39 years old and has been diagnosed with Stage 4 pancreatic cancer around a week ago. He has been given 3-6 months to live. The cancer is 5cm in the head of his pancreas, and has also metastasised to his liver I believe as well as several peritoneal lymph nodes - although the medical team are not sure about the lymph nodes at the moment. (this is a medical negligence case which we will be dealing with separately). This was a huge shock for us and we are completely devastated. He has a 5 month old and 5 year old too. He has received no treatment thus far. His cytology report was inconclusive and he therefore had a liver biopsy to determine the tumour type. We will then look to start chemotherapy asap. He also has a PET-CT scan scheduled for Thursday. We've also looked into and started some alternative therapies too. We are feeling so lost. I wanted to know if anyone please please has any advice regarding next steps/what we can do to fight this? We are more than happy to pay/go private/go abroad if this will help. We are based in the UK. Any support would be greatly appreciated. Thank you so much.

Hi @kate2101 I’m just reading back on this thread, how are you doing now? Are you still sporadically on Folfirinox at the reduced dose? You’re my beacon of light on here since my mum has been diagnosed

I've tried different CBD options, and thc gummies were the most effective for me in terms of relaxation and sleep. I made sure to start with a low dose to see how my body reacted, then adjusted as needed. Everyone’s experience is different, so keeping track of how you feel can be helpful. It's worth checking with a doctor, especially if you're on other medications or treatments.

My uncle went through chemotherapy a few years ago and, with his oncologist’s approval, he started taking CBD oil. We weren’t expecting a miracle, but they did seem to help ease some of his nausea and made it a bit easier for him to keep food down. It didn’t eliminate all the side effects of chemo, but from my family’s perspective, every small relief counted

Hi bluepeter, How are you after your radiotherapy? My mum was offered 5 days of palliative radiotherapy recently and hoping she will be able to start it soon Thanks

Pancreatic cancer can affect every part of your life, including your emotions. Whether you’ve been diagnosed yourself, or are supporting a loved one, it’s normal to need some support. Join us as we talk openly about what to expect and share some practical tips for how to look after your emotional wellbeing. You’ll meet two of our Specialist Nurses, Lisa and Jeni, who help people affected by pancreatic cancer every day on our Support Line and we are also very excited to welcome Tara White, Centre Head of Maggie’s Swansea, who will be joining us for this session. To find out more and book your place, visit our website

Hi Does anyone have experience with clinical trials for stage 4? My mum had several months of treatment on gemcitabine-abraxane and was swapped to folfox after progression. She's had 4 treatments of folfox which has unfortunately not worked. Her main tumour is stable but her 2 lung mets and 1 liver met have increased by a few mm's. Hoping she may be offered folfiri also. Thanks in advance

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.