CancerCompass message board discussion started by cycleski on 4/25/2008 http://www.cancercompass.com/message-board/message/all,23436,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi everyone, My mom was recently diagnosed with T cell Prolymphocytic leukemia, a very rare, more aggressive form of leukemia.  I have searched the internet and most of what I have found is 5-8 year old information.  Does anyone know of any more current info, either websites or other places....  She is currently taking Campath subcutaneously 3x/week...   thanks for any and all help and info....  cycleski Fri, 25 Apr 2008 00:00:00 GMT 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. utriumph Wed, 21 May 2008 00:00:00 GMT  On 5/21/2008 utriumph wrote: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.Hi,How did you find out about your disease? My loved one thought he had gallbladder issues and found out he had T-cell PLL after bloodtests, CAT scans etc.  His oncologist says he's never treated this before and has referred him another physician.  Your posting has given me hope to pass on to Dean.  Please keep posting things to continue to give people hope.  Thank you.Diane lovingDean Thu, 12 Jun 2008 00:00:00 GMT  My mom was diagnosed with the T PLL from a blood test during an annual exam.  Her WBC was 307,000.  Her symptom was that she had been feeling more tired over the previous 6-12 months.  She has been on Campath for 10 weeks now and has made very good progress (thank you God).  Robin  cycleski Tue, 17 Jun 2008 00:00:00 GMT