t-cell prolymphocytic leukemia

I am 60 and am 78 months out from diagnosis after a Campath induced remission in  '02, relapse and remission in '04, followed by a non-myeloablative (mini-) allogeneic stem cell transplant in '04 also.  There is very little literature because this is a rare disease and not many peoiple are working on it, plus it is hard to compile data with such few subjects (maybe 125-150 US new cases per year).  There was a scattering of studies out in '02 - '03 highlighting success with Campath.  Campath remains the treatment of choice, sometimes paired with drugs in the Pentostatin family. The disease, as far as I know, is still considered uncurable.  But 78 months months is certainly simething to aim for.  I have been blessed.

My husband was diagnosed with T-PLL in December 2007. Watch and wait up to now. Last week treated for pneumonia and had to have fluid removed from outside of the left lung. Dr. is now talking about possibility of starting treatment. Spleen is slightly enlarged, some lymph node involvement. Not sure where to turn and want to hear from others about what to expect. He has mentioned Campath along with Pentostatin(sp?) and Flurodobine (sp?)