View Single Post
  #1  
Old Tue Jul 23, 2013, 05:01 AM
PattiDean PattiDean is offline
Member
 
Join Date: Jul 2012
Location: Clearwater, FL
Posts: 171
MDS RAEB-2 and now severe Myelofibrosis

Dean has been on Dacogen for almost a year, and was doing well, needed transfusions now and then and his WBC was always terrible, but we were able to get out to the movies, dinner and week end getaways. In May his counts began to fall even more and not recover as the weeks went on. He became extremely weak and short of breathe.

The end of May Dean had his last treatment of Dacogen. He was suppose to have his usual cycle (five days every four weeks) the end of June, but all his counts were very low, so no Dacogen. His oncologist postponed treatment for a week. The following week, beginning of July, Dean's counts were still very low, so the oncologist said no Dacogen, but ordered a BMB.

Last Friday Dean had to receive transfusions of blood and platelets. Yesterday we received the first results of his BMB, his blasts are 15%, they had gone down to 5% when he began Dacogen.

Now in addition to MDS, the biopsy shows Dean has severe Myelofibrosis. Dean is being referred to Dr. List at Moffitt, as soon as he can get an appointment. We are lucky to be living so close to the center.

Dean has been a trooper, so much braver than I could be, but last night he began to cry and told me how afraid he is. It was so hard to see him like this. I know in my heart it doesn't look good, but I am trying to keep giving Dean hope. We are alone, no siblings or children, not having a family to turn to is so hard.
__________________
Dean,age 76, dx MDS, RAEB-2, 17% blasts, June 2012 - May 2013 - Dacogen with Neupogen and transfusions as needed. End of May 2013 Dacogen stopped working. BMB July 2013 shows RAEB-2 and severe Myelofibrosis. Passed away September 30, 2013
Reply With Quote