Oct 04, 2009 - 6:53 pm
Posting from the UK - 14 year old daughter diagnosed with Hodgkin's Lymphoma stage 2BE almost 2 years ago. Completed initial 4 month course and was told that would do the job - no scan offered, not happy and eventually after 3 month delay, private scan performed only to show disease spread! Told it was 'progressive disease' and second course of 'add on' chemo from October to December when we were told her prognosis was around 30%, followed by radiation in January / February of this year. Told likely to have done the job but consultant ordered PET scan. This showed initial disease one but new hot spots in previously unaffected areas.
Further chemo (stonger) through the summer followed by PET scan which showed clear for first time ever (early August) and then PBSC transplant late August which she is recovering from now.
The thing is, if it is highly likely to come back then our family would take drastic measures like sell the house, travel, give up work, etc and give ourselves good family times. But, we can't afford to just do this without (unfortunately) thinking that we have limited time left.
Is her prognosis of 30% from last year likely to have got better or worse (as I suspect)?