Hi my mother has non Hodgkin lymphoma and it's came back for the 3 rd time ,

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Has any one else out there had it come back so many times it's every 18 months . Can any one tell me what their experience is and may be what treatment they have had please .. mum gets so sick with chemo and is in bed for days after each session . Thank you

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  • Posted

    Hi Tanya. I finished treatment for DLBCL about 15 months ago. My haematologist told me that once you have had cancer that the cancer and the chemotherapy can cause more cancers further down the line. A cancer survivor has a 15 per cent higher chance of getting another cancer than somebody who has never had it. Having said that, that also means that you have an 85 per cent chance of never getting cancer again. It sounds to me that your mum goes into remission but the same cancer keeps coming back. Can I ask what stage she was diagnosed at initially?
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    • Posted

      Hi Joy, the doctor has never said what stage she is at he just said its slow growing and it is only in the lymph nodes in her tummy, it always comes back in the same place and is not any where else . The chemo makes her very unwell she is 73 but on till this very active and well . She is now saying she is not sure she wants to go through the chemo again she can't face it . Thank you for your reply we live on a small island and mum feels very alone with this as we can't find anyone else that has it .

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    • Posted

      I'm surprised your mum wasn't told what stage she was, that's normally one of the first things they do after diagnosis, staging. Did he ever say if it was indolent or aggressive? Can I ask where you live so I can suggest who your mum may be able to talk to for advice and support?

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    • Posted

      Hi again Joy, he never used the words indolent or aggressive but I'm guessing it's not aggressive as she has had it for 5 years and this last scan shows it has returned and is the same size and site as when they first found it . We live in Guernsey Channel Islands .. Mr Davies is the consultant and he flys over from Southampton . 

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    • Posted

      You can contact Macmillan nurses online and by phone. They will talk to you and/or mum and help you through this. Just Google "Macmillan helpline" or "Macmillan online". And this site is always here for you.

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    • Posted

      Hi Tanya, It's been about a month since I last saw a comment on this site from you, and I am wondering how things are going with your mum.

      Also, I was interested to see if the responses from others have been of assistance to you.

      Bearing in mind that the majority of us who respond to posts are either patients or survivors and can only offer support or share experiences.

      Having said that, it is comforting to know that there are people who do care by doing just that.

      Don't forget that we are out here and are willing to engage in the care and share. ....... who knows, an experience by one could be the key for another.

      Keep well the pair of your and stay in touch.

      Cheers,

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  • Posted

    Hi Tanya,

    I see that Joy has replied to your post and as always has supplied her supportive best.

    As a survivor of Non-Hodgkins Lymphoma and having been through the mill with the various treatments, I can certainly relate to your current feelings.

    ​Might I suggest that you have a look at my story by going to the Patient Home Page and searching JohnEdna........ Hopefully there might be something within which gives you some solace in your desire to understand the disease and the treatments.

    ​As for the side effects might I say...... Everyone is different and has different approaches to handling illnesses.  I found the best way for me was to accept what I had been dealt, listen to what the experts (Oncologists) tell you and have faith in their recomendations, and above all, work with them.

    ​Remember too to always stay P O S I T I V E. 

    ​I did exactly that and I am still waking up in the mornings.

    ​My best wishes to you and your mum.  I look forward to hearing more from you on this site.

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