Low Grade Non Hodgkins Lymphoma

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.....

Parents
  • Hello Gabrielle, I am Parfait, I am hoping you read my story on this subject, I too have low grade NHL, stage 4 large follicular B cell Lymphoma. I have been living a very good life for 16 years, which has included treatment after my 6th year and 7 th year, I had it in my bone marrow upon diagnosis from having a bone marrow biopsy. Now 8 years after treatment no appearance in the bone marrow, you should understand that low grade lymphoma is chronic, the other grades are curable true, but with low grade you can get another grade so that only means treating symptoms of 2 forms of Lymphoma, it doesn't mean your low grade goes away if you get a higher grade too. So you should toss out that notion and concentrate on healing yourself from within, it sounds to me that you have a lot to live for and you must think in positive terms of being well to take care of your lovely grandchildren. My life is all about thinking positive, being in the moment, staying focused at the task at hand, the most important task we have Gabrielle is to look forward to each new day with hope. Breathe, eat, rest, love and accept love. You are human so remember that, we all have our flaws, cancer is a difficult one, but you can live well as I have with the side of your brain that remembers happiness, and joy.you are not your disease you are you! Everyday get yourself back a bit stronger and you will turn around and realize the topic isn't just Lymphoma. The topic is what you make it. Believe me the beginning of diagnosis is vey stressful, but now that you have one whole year under your belt it is time to live in this next year moment by moment. My moments have stretched into 16 years living with NHL. I wish you good luck Gabrielle. You will do this, I have, so why not you too!

    This is from me 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.

     

Reply
  • 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.

     

Children
  • 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 .