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    1. News from Pancreatic Cancer UK

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

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

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

      A forum for advanced pancreatic cancer issues
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    6. General chat

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

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

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

    • Jenny.0
      Hi RooBear - have you spoken to the nurses at Pancreatic Cancer Uk?   Give them a call and they will guide you through it and give you sound advice (as they know their subject).   I hope that helps   Jenny    
    • Jenny.0
      Hi Emma.   I am the same as you - Stage 4 but it was too late for surgery for me because it is wrapped around an artery. I was diagnosed after losing weight (22kg in 6 weeks - I was overweight though so am now at ideal weight!). Other than being tired, I had little or no symptoms otherwise. I am 57 and was diagnosed in May last year.   I am about to have my 23rd session of Folfirinox which, so far, has removed my secondaries from my lungs (they are not sure about my liver because it is very fatty with the chemo but its not looking any worse so that's good!) and my primary cancer is stable, not growing. So I am buying myself time.   Don't be afraid of what's coming because the chemo (if that will be your treatment) isn't that bad (in my personal experience) and you are young so hopefully can live with the treatment and also maintain a reasonable standard of living (I have - been doing all sorts on my bucket list). As others have said, it could reduce your tumour enough for surgery. From what I have seen, everyone reacts differently to treatment so there is not a 'one size fits all' because the various stages and severity of this cancer seem to make it difficult to do.. just trust your oncologist - I am at Oxford also and I think they are great!   I have heavily relied on the nurses at PCUK for factual information and they have been amazing. I am also lucky enough have a local hospice that I get emotional support from because the diagnosis is a bit of a shocker and I needed help to process it. Hospices do many therapies and sessions to help living with cancer.   I hope that helps in some way.   Jenny x
    • PCUK Nurse Rachel R
      I'm very sorry to hear about your lovely brave Mum Jil.  You must miss her very much.  She sounds like an amazing special lady.  I'm sure you were such a comfort to Mum.  Thanks for your support to others affected by this devastating disease. Rachel   Pancreatic Cancer Specialist Nurse Pancreatic Cancer UK Support Line: Freephone 0808 801 0707 (Mon, Tues, Thur, Fri from 09:00 - 16:00hrs and Wed from 10:00 - 16:00hrs) or email: nurse@pancreaticcancer.org.uk
    • RooBear
      Hello.  I am a first time poster on this forum.  My dear mum has advanced, inoperable PC which has spread to her liver and breast.  She is five months from diagnosis, bed bound, receiving hospice care at home.  Sadly, she was not a candidate for chemo following a horrible infection after the sent was fitted (resulting in a six week stay in hospital).   Three weeks ago I felt we were close to losing her but she was prescribed 4mg of Dexamethasone which gave her her appetite back, but not really the big boost we were all hoping for; she is sleeping 18 hours a day.  She is now receiving 2mg and by the end of this week will be on 1mg a day. She is fading, despite the steroids.  My question is, what will happen when she comes off the dexamethasone completely?  As I understand it, steroids only mask what is happening inside.  I cannot see how my mum will survive without the dexamethasone.  Does anyone have any experience of this steroid and what happens when it is stopped?  Is decline rapid at this stage when nothing more can be done?   So many questions, many of which I know can't be answered.  I think I'm just reaching out to people who are or have been going through similar.   Thank you ❤️    
    • RooBear
      Hello.  I am a first time poster on this forum.  My dear mum has advanced, inoperable PC which has spread to her liver and breast.  She is five months from diagnosis, bed bound, receiving hospice care at home.  Sadly, she was not a candidate for chemo following a horrible infection after the sent was fitted (resulting in a six week stay in hospital).   Three weeks ago I felt we were close to losing her but she was prescribed 4mg of Dexamethasone which gave her her appetite back, but not really the big boost we were all hoping for; she is sleeping 18 hours a day.  She is now receiving 2mg and by the end of this week will be on 1mg a day. She is fading, despite the steroids.  My question is, what will happen when she comes off the dexamethasone completely?  As I understand it, steroids only mask what is happening inside.  I cannot see how my mum will survive without the dexamethasone.  Does anyone have any experience of this steroid and what happens when it is stopped?  Is decline rapid at this stage when nothing more can be done?   So many questions, many of which I know can't be answered.  I think I'm just reaching out to people who are or have been going through similar.   Thank you ❤️    
    • Jil
      We lost our Beautiful, brave Mum on 7 May 2022 to this awful disease. She was diagnosed Nov 21 - So she fought bravely to the end, but lost so much weight it was heartbreaking (tears writing this). She managed to be home for Christmas & New year, but was back in hospital 14 Feb, only 6 more days after that at home, then hospital & finally hospice. She never once complained. Watching the disease progress in someone you love, the fact that they cannot eat or drink, but are dry & thirsty is awful. I pray for anyone whos is currently suffering from this terrible condition, & their families. Sending love x
    • Mrs T
      I too try to focus in the positives. My mom was at peace with her diagnosis as like your dad she had a fulfilled life and was happy with all aspects, not having any regrets etc. Her cancer journey was short and not drawn out in pain and lengthly suffering.    I'm just keeping busy with funeral arrangements....Still feels so surreal.  Thinking of you ❤️ 
    • Mrs T
      Sonia1 my heart breaks for you. Hope you are OK and your dad is at peace or settled. Thinking of you. X
    • broju
      I'm so very sorry, Sonia1.  I know there are no words that will help but as Floofman has said there are many who will have followed your posts and will be thinking of you and your family just as I am.  Take great care of yourself and your family. XX  
    • Floofmom
      I am so sorry to hear your sad news Sonia1.  I know there is nothing anyone can say to take away the pain you are feeling right now but please know that there are people out there thinking of you and wishing you and your family well during this very difficult time. Sending you love x
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