Feb 20, 2010 - 7:52 pm
I am interested in discussion regarding adults who have had a allogeneic stem cell tranplant as treatment for PH+ acute lymphocytic leukemia. Looking to share knowledge regarding longevity, prevention of relapse, and dealing with side-effects. Examples:
1)Tests and therapies for reducing the chance of a relapse (i.e Gleevec)
My story. Hispanic male dignosed in late 2007 at age 57. Recevied chemo, radiation, and transplant at City of Hope. Greatful to be here two years later. Quality of life is good. Given Gleevec for six months after transplant, then stopped. Now getting blood tests every two months. (Doctor says that test for PH+ [BCR/ABL]is important and that he would put me back on Gleevec if there is any change.) Blood counts still low (WBC 4.4,RBC 3.6, Platelet 124). Stamina is about 80%. Developed chronic GVH about six months after treatment. It started as dark skin spots and later skin tightness and swelling below the knees and fists. The swelling looks like lymphodema, but doc says it is not. He also says it is difficult to say if and when the swelling will go away. Would love to get rid of it. Swelling goes down over-night and increases as the day goes on.
Thank you for any information or suggestions. Tell us your story.