Enlarged spleen low grade NHL

Hi people, just wondering if anyone has experience of enlarged spleen (20cm) who has low grade follicular cancer and stage 3. I'm struggling at the moment to cope with waiting for my appt' on 3.9.14 where he will assess weight (down from 9 1/2 stone to just over 8 1/2 stone) and blood tests taken that day and scan results. No liver or kidney problems.

I was diagnosed last November, on wait and watch. After the initial shock I felt all ok till spleen grew about 8 weeks ago. This has put me off balance, back to square 1 and finding it difficult to put on a brave face at work and with grown children. Partner good and supportive, friends also supportive, but I don't feel like seeing people much right now as I don't have the energy to be social.

I wonder how others have coped, did they have treatment or live with enlarged spleen?

Thank you for any feed back - Sara.

  • Hi Sara, I want to welcome you to the forum where people here can understand your concern about what's happening to  you. I don't have any knoledge about your particular problem but I'm sure there must be others on here who have some knowledge about it. In any case, you could post your question in the category "Ask the Nurses" and they can likely shed more light on your concerns.

    In the meantime, you will find support on here from othe posters who can relate to your particular concerns and I'm sure someone will be along before too long.

    Take care and keep posting to let us know how it goes.

    Lorraine

  • Hi Lorraine, thank you for your message. I'll write here when I know what treatment I'm offered, would be good to see how others have coped. Just want to get something started now.

    Thank you for your support - Sara

  • Hi Sara,

    Like Lorraine just wanted to say you are welcome here where other people understand the strains of life with these cancers.

    At the moment you are in the awful waiting stage and although your appointment is not long (as September is here day after  tomorrow) the waiting always seeems interminable and that

         is the time you have for your mind to do its worse. An overactive worrying mind comes with the diagnosis I have decided. In the quiet moments in particular.

    Well I wish you all the best when you get to see your consultant and find out what the treatment plan is.

    Do let us know how you are going on and if we can be of any help we will do our best.

    Loads of virtual hugs

    Annabel. xx

  • Going through something similar what we're the results?how you doing?

  • Hi Berd

    I'm doning fine thank you. I saw the consultant last September and had 6 months chemo - Rchop - every 3 weeks, not too bad other than losing all hair and 1 bad infection, I was hospitalised for 1 week. I finished  in January, complete remission!!!! I'm now on Rituximab maintenance for 2 years and back at work. I'm doing fine, tired after the jab, I have it every 8 weeks. I'm a nurse and am taking retirement in 3 weeks time, (I can go at 55) but will do 2 days a week. 

    Due to my spleen being so big they were unable to do a biopsy so I don't know whether my low grade transformed, he said time will tell, so far no lumps found by hand. I'll have a CT scan in December to see how it goes.

    Whats heppening with you? 

    Sara