Concerned about 2nd PRRT

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This topic contains 7 replies, has 5 voices, and was last updated by  Catherine McArdle 2 days, 17 hours ago.

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  • #56179

    lanemole
    Participant

    I’m having my treatment on Monday. I’m worried because I’m not as strong as last time. I’ve lost 3 stone since August (my last treatment). I have no appetite, i flush every time I move, I have diarrhoea most days and I’m quite sick some days. I feel quite weak and shaky most of the time, my husband has to look after me. I had such a bad reaction to the PRRT last time because of the huge amount of hormones released. I’m worried about how I’ll cope. Having a 3-4 hour car journey both ways isn’t helping. (I know I need it)
    Anyone else felt like this?
    Elaine

    #56180

    dabber
    Participant

    Hello Elaine, oh, dear, so sorry you are suffering. Why don’t you give our nurses a ring, or e mail them at [email protected], I am sure that will discuss this with you, I do believe we have someone in the office who can talk to you about your fears, emotions etc. not sure about this, but I will check up. I can’t comment because I have not had PRRT, and as you know, we all have such differing side effects to the injections, etc. Very difficult for me to comfort you, and little point in saying ‘try not to worry, it is a very negative emotion’ we do worry, all of us. I do get a lot of pleasure, just looking out of the window each day, and thinking what a beautiful world it is, we get the most stunning sunrises and sunsets where we live, and this makes me glad to be able to see this each day, but I wasn’t given very long to live initially, so this is the reason, each day is precious. I would love to make you smile, but remember, life has two rules, 1] never quit and rule 2] always remember rule 1.
    I am always here, I don’t post very often now, but I always look, and will always have a little chat with you, Carole.

    #56181

    Catherine McArdle
    Participant

    Elaine,
    Thinking of you and hoping for the best. I have not had PRRT either so can not give you any words of wisdom. However, the second treatment may be completely different from the first. Hope so. I have my second set of repeat tests starting this weekend. I have been having pains where I think my liver is (anatomy was never my strongest subject at school) so am worried in case the tumours have spread.
    Let us know how you go.
    Catherine

    #56182

    lanemole
    Participant

    Thank you Carole, I’ll try to appreciate the little things, I do like to see the sun shining and hear what my little grandson has been up to. I hope things are better for you now.
    I’ve been so sick again this morning. I just don’t understand why everything has got worse since Christmas. I had started to eat a bit more and put on a little weight. I was in pain all night Catherine, in the centre of my stomach just below my ribs and spreading down my left side. I always wondwr if its my liver. My stomach felt like a washing machine. The ondansatron and lopranazole are not stopping anything. I’ve seen GPS, they change my tablets around but nothing seems to help. When I saw my consultant in November, he saw how ill I was and said get the PRRT done. Unfortunately it was cancelled twice in December. I’ve spoken to the NET nurse in Liverpool but she can’t understand why I’m being sick. I don’t know what else to do. I’m eating so little you wouldn’t think I could be sick.
    I’ll try emailing the foundation nurses later.
    Thank you

    #56191

    Nikie Jervis
    Keymaster

    Dear Elaine

    I hope you received my email – and hope Monday went well and you were able to have a discussion with the team about how you are feeling. please feel free to give us a ring if you would like to talk things through : 0800 434 6476 – as I said in my email, both Lindsey and I are NET nurses by background, and Lindsey has further experience as a Nuclear Medicine Sister in helping people through PRRT

    Take care
    Nikie

    #56196

    Christina
    Participant

    Hello, sorry to hear you are worried but as someone has said previously the second round may be different. I’ve learnt to take it day by day as somethings I’ve worried about have turned out to be not as bad as I’d anticipated. I’ve always suffered from anxiety too but since my diagnosis back in April last year I’ve learnt to just go with it. I absolutely hate mris however I’ve come to terms with that this will be my future now, to have to endure this and possibly other rubbish aspects to the process and management, I try to focus on the positives and that we are lucky to have so many good health professionals looking after us.
    I hope this round is better for u. I am due to have this treatment soon so perhaps I can relate more to your concerns but I will try not to worry, the way I see it is it’s a essential step in the right direction though it may seem a small step in the grand scheme of things it’s a step nonetheless. Remember how brave u have been already, find strength from that. If u want to chat some more then I’d be happy to. We’ll get there in the end 💪👏❤️

    #56199

    lanemole
    Participant

    Thank you Nikie, I have received your email. I will reply soon.

    I’ve always been an anxious person Christina. I was very concerned because my symptoms were getting worse not better after the treatment. I had the treatment on Monday. It was a long day and I felt really tired otherwise ok.

    I haven’t been too bad so far today but the nausea is coming on. I have made arrangements for the district nurse to come out and give me anti sick injections. Hopefully this will make a diffference this time around.

    I do feel positive about the treatment and see it as a necessity. I found it difficult because everyone else seemed to have improvements quite quickly.

    We’ll see what the next few days bring.

    Elaine

    #56201

    Catherine McArdle
    Participant

    Good to know you got through the day.

    Thinking of you and hoping the nausea does not kick in.

    Let us know.
    Catherine

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