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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.....

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    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

  • Offline in reply to Parfait

    Thank you so much Parfait. Your words make a lot of sense and I will do my best to take the same sensible outlook. 16 years is amazing - that's wonderful. Stay well now and please keep in touch.

    gabrielle x

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