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Prognosis following PBSC transplant for progressive Hodgkin's Lymphoma

Lou-Lou
Posts: 1
Joined: Oct 2009

Hi,

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.
QUESTION that everyone is avoiding is her chances now. They are all very smiley and 'go and enjoy life' sort of way, but I want to know the facts. After so many delays and so much treatment, how successful can I really expect this stem cell to be? No one will give me a figure ... nothing, full stop. Just told that she is in remission at the moment.

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)?
Anyone out there got any actual facts on this - I would like to have the facts and not simply be continously told not to worry!!!

DennisR
Posts: 148
Joined: Sep 2009

Hi Lou,
I'm very sorry to hear of your daughters condition and struggle. Keep up the fight and never give up hope.
I had a similar Dx resulting from a recurrance of NHL. I also had tghe Chemos/Radiation and a peripheral stem cell transplant from which I am still recovering. My Oncologist told me that in his experience recurring cancers tend to continue to recur with shorter intervals between them. With the PBSC transplant, he said my odds went from virtual certainty of a recurrance within 6 months to approximately a 50% probability of a total remission.
Not real reassuring, but better than the alternative. So far so good.
You might look at the Leukemia & Lymphoma Society website where you may find later up to date info on a prognosis after a PBSC transplant, they monitor a great number of L & L patients and keep their info pretty much up to date. Hope this helps.
DennisR

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