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
  • Hi Gabrielle, Ive just been reading all your emails.....Im so glad Monday went well for you....thats the thing with ts dam disease....the word is so scary..and we tend to jump ahead of ourselves..which is very natural i guess.  I was diagnosed with Hodgkins Lyphoma in 2003....i had tumour around my heart lungs and oesophugus! i was given 6 weeks to live!!....i was put into intensive care for 2 weeks..and given emergency chemo.....to their amazement the tumour started to shrink.....i had 8 months chemo and a months radiation......this was all in South Africa ....where we are from....i then moved here with my family..as there is no such thing as the NHS.....so we lost everything!! i was working full time..which i had to give up..as i just could not stand in that heat all day!!....Chemo was tough....but i kept a diary...and got involved in many projects...painting...drawing..writing!! i found keeping busy was the key!! i had shoulder length hair....which i shaved a number 2...and that helped...as i did not want to have bald patches...it went very very thin...but no bald spots....Everyone is differrent...and the meds change all the time...as they discover new ones....which is wonderful....the anti nausea ones are allot better now i believe....but you will get there...we are all here for you....you are never alone.....take care and keep us updated!! ive been clear now since 2009!! xxxxx Regards Cheryl

  • Hi Cheryl

    How sweet of you to contact me. You have been through sooo much it makes my problems seem very small. I agree that keeping busy, writing etc - which I also do - does help and takes your mind off the "dreaded" word of what is going on inside one's body. I gave up work early to look after my husband who sadly passed away last July. Although I have a very caring family the loneliness sometimes gives one too much time to dwell on things. I would love to work again but can't see that happening in the short term. I think you have been so brave and would like to take you (and Jeff) as an example of how I can be too. So glad you have been well for so long. I haven't got a date for my ultrasound yet but fingers crossed all will be ok.

    Many thanks again and stay well!!

    gabrielle xx

Reply
  • Hi Cheryl

    How sweet of you to contact me. You have been through sooo much it makes my problems seem very small. I agree that keeping busy, writing etc - which I also do - does help and takes your mind off the "dreaded" word of what is going on inside one's body. I gave up work early to look after my husband who sadly passed away last July. Although I have a very caring family the loneliness sometimes gives one too much time to dwell on things. I would love to work again but can't see that happening in the short term. I think you have been so brave and would like to take you (and Jeff) as an example of how I can be too. So glad you have been well for so long. I haven't got a date for my ultrasound yet but fingers crossed all will be ok.

    Many thanks again and stay well!!

    gabrielle xx

Children
No Data