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Low Grade Non Hodgkins Lymphoma

gabrielle
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I was diagnosed a year a go with low grade NHL. The consultant decided to take a "watch and wait" approach. I have recently experienced severe night sweats and know the lymphoma is in my bone marrow as I fell and broke my hip earlier in the year and pathology of the femur showed it to be present. Because of the start of night sweats I have been recalled to Oncology on Monday 9 January instead of March - my next appointment. I am really worried - i.e will they start treatment immediately, if so what - if it is chemo will I feel very ill and lose my hair etc.? I need to be around to look after my daughter's young children - and hopefully feel up to the task. Could low grade NHL change to high grade? (which I know is more likely to be curable). Any comments, encouraging or otherwise, will be very welcome as I am really worried, My husband passed away last year so I have a lot of time on my own to think about the future. I just long for more years.....

  • Offline in reply to dad1929

    Hi Jeff

    Yes I have been busy too but the weekend gives a bit more time. I'm glad you're managing the work ok although it must be tiring. I'm feeling ok at the mo (inspite of a horrendous cold). Just looking forward to some warmer weather as I'm permanently freezing. Keep in touch and let me know how you are getting on when you have time.

    gabrielle xx

  • Offline in reply to dad1929

    Hi Jeff

    I think you posted me a message quite recently but for some reason I don't seem to be able to find it!  Hope you're doing ok. I'm still watch and wait - next appointment June 18.

    Take care

    Gabrielle x

  • Offline in reply to gabrielle

    hi gabrielle

    i tried to send a message to you but it said you could not receive,but anyway i will keep trying,so just to let you know how i`m doing,i`m back on two shifts at the minute which are dayshift 7-3 and backshift which is 3-11 and its not going too bad,and i have to see occupational health nurse at work on the 26th mar with a view to doing nightshift as well, providing everything is ok,which so far touch wood it is,anyway i hope everything is fine with you and good luck for june so for now take care.

    jeff hugz n x

  • Offline in reply to Parfait

    hello Parfait.  I have just been diagnosed the same as you and starting chemo tomorrow.  your story has given me hope.  I also believe in being positive, not looking beyond each day and fighting against this "thing".  it's very daunting and the fact it's cancer, conjures up all sorts of black thoughts, but I don't go to that place.  I had a bad day yesterday and I know that will happen.  My family including grandchildren spur me on and i hope like you to have many years ahead of me, despite the fact that low grade NHL is recurring.

    i don't know how I will feel after my first cycle, as everyone is different, but I am ready for it after all the prodding, poking, tests, scans, biopsies and visits to hospitsl to see consultant.

     

  • Offline in reply to Denise50

    Hi denise

    my name is Jeff (alias dad1929) in memory of my late father,I too have B cell lymphoma and had treatment in 2010/11 and although it took a little time to get over it I am now doing really well and I am due For a check up on wed the 22 of June, I was diagnosed on the 5th of July 2010 and started treatment of f c r  which was a combination of fludarabine chlorumbucil and rituximab of which the first two were tablet form and the last one drip feed (excuse that description but I've had a temporary memory lapse),but not to worry,anyway I hope things go well for you when you get underway with the treatment,and just to let you know that I will be hear to help you anyway I can just as many nice people did for me, people who are unfortunately who are no longer with us but will never be forgotten (Tony song hurst he was a legend to me and dizzie she was a lovely lady and so inspiring and brave as so many people on this site are, so keep your chin up and stay positive as it really can help,so for now I am sending cyber hugs and kisses so take care.

     

    jeff .

  • Offline in reply to gabrielle

    Gabrielle, hope this helps but I was diagnosed with stage 4 non Hodgkin's lymphoma of the oesophageal, right lung and stomach, it was speeding that fast that within a few weeks it spread to my stomach.  I was originally told 3 months palatine care only before they found out it was non Hodgkin's lymphoma and underwent 6 cycles of chemo and a year later I am still here.  Not wishing to minimise your understandable worry but non Hodgkin's seems to be one of the 'better' cancers to have - if that does not sound too sick?  My Wife also had the same but in the eye and grade 1 she survived 10 years before her sudden death this month from a blood clot - totally unrelated. We need to spread the word about cancer and tell our loved ones our worries as they can be our greatest strength.  I would not wish it on anyone but so glad I survived and thought my Wife and I would have years together.  Just goes to show you need to LIVE for today and tell everyone you love them every day.  Try not to stress as the worry could take your mind off life and you could walk into an accident! Try to see everyday as a gift and live it.  I damn well am going to do my best - it is what my Wife would have wanted. Love, Jim

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