Mum recently diagnosed with Stage 4 PPC

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Hi all,

So glad to find you as there is hardly any information on this type of cancer so really useful to read your experiences.

My mum was diagnosed with stage 4 PPC yesterday, she is due to undergo chemotherapy and probably an operation but has been told she’s still only likely to get 3-4 years.

She is only 64 but super fit and healthy...she’s not ill at all now so we are still in disbelief.

What’s everyone’s experience? Is what they’ve said likely to be what we are looking at or is that worse case scenario?

I am a positive person by nature and don’t want to equate her to a statistic as I need to believe we have something to hope for.

she is dreading treatment too, especially given all this Covid stuff...any help you could offer, tips etc greatly received xxx

  • Look on the diagnosis as a positive. At least you know what you are dealing with and that, in a funny way, makes things easier. Youmention you have a positive attitude and if your Mum has it as well then that is really good. I was told I had responded to treatment well because of my attitude. Chemo sounds frightening but I found it not as bad as expected. Yes I was tired but not sick. The pills they give you help with this. The nurses in the chemo unit were lovely. We went out quite a bit but I would find I suddenly had an overwhelming wish to sleep so a quick “nod” in the camper van and I was fit to go.I had the operation. A couple of days and I was back in the ward from a high dependency unit and no pain.Then avastin which left me with achey joints. Now I am one year on from the last treatment and nearly three years from original diagnosis. By the way I was told then the disease was severe, diffuse and developing rapidly. We aren’t all the same but hopefully this gives you and your mother some hope? We are a select band so have faith things are not as bad as they seem.

    Don’t forget it is important you look after yourself as well as your mother. One final word of advice if you haven’t  been told about this. The hospital can provide details for the attendance allowance forms which means you have very little 5o fill in and the same goes for a disabled badge. Both these things help a lot. Before COVID I paid for a cleaner which gave me time for nicer things than cleaning.

    good luck

    wendy x

    Wx
  • Thanks Wendy that’s really helpful. We are going to get her Covid test today in the hope she can start treatment soon. I am becoming more hopeful each day and hearing stories like yours makes it easier. I guess the key thing I am focusing on is that if I get preoccupied with her dying I’m not going to be able to properly enjoy her living and so I’m trying to take each day as it comes and make them the best I can for her x

  • You've given me more hope too, Although we know everyone responds differently, it's heartening to know others have pulled through   

  • that's sound advice  She'll be worried about you too  But yes, enjoy what you can everyday  

  • I've just started my chemo (carboplatin and paclitaxel) and wanted to think that I would be one of the lucky ones for whom it wasn't too bad.  My first week has been grim but is looking up now that I'm on a different anti-nausea med   Keeping water, food and meds down is SO important so if there's still vomiting do ask for help straight away   

  • Hi all, I hope everyone is doing well. My mum started chemo on Thursday and was doing well until yesterday and when she started having severe stomach pain, after consulting with the hospital, a GP came to see her and said he thought it was a result of the chemo attacking the cancer...has anyone else had this? Is it likely to happen each time? The other symptoms are yet to kick in...it’s a strange situation as she had no symptoms from the cancer itself, it’s the chemo that is making her feel bad so just have to hope that it will serve it’s purpose xx

  • I'm sorry Maggie that I've not been online here so not seen your query: perhaps as it's landed as a reply to me, perhaps others didn't see it either.  I do hope your Mum is feeling better now.  I've had 3 chemo cycles now and I think each one has posed me unexpected worries   But each time it has turned out to be just that  A worry  The 24hr helpline run by the oncology team looking after me has sorted it out, bless them