View Single Post
  #2  
Old Fri Nov 21, 2008, 05:35 AM
Birgitta-A Birgitta-A is offline
Member
 
Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Stop treatment

Hi Kathy,
I got my preliminary MDS dx May 2006 but it soon changed to Myelofibrosis. I looked at the treatment for Myelofibrosis and told my dr that I only wanted supportive care - transfusions. Aug-Sept 2007 my WBC:s disapperared after four infections. My dx was changed to MDS Interm-1 and I have had Neupogen 2 injections/week since then with good effect.

I still think supportive care is best for me as long as I am asymptomatic and I am hoping for treatment for low platelets. Yesterday (20 Nov) the second drug for low platelets - Promacta - was approved by FDA for patients with Immune Thrombocytopenic Purpura. Hopefully we will be able to get that drug if the trials will show that it has good results in treating low platelets due to cancer treatment.

I know that I am 22 years older than you are and that makes a difference when we make this kind of decisions.

My dr has respect for my decision to not try any drug like Vidaza or Zolinza (a histone deacetylase inhibitor) yet. Hope the staff at your hospital will respect your decision if you want to wait with Vidaza!
Kind regards
Birgitta-A
69 yo, transfusion dependent, Desferal 4 days with transfusions for iron overload, Neupogen 2 injections/week for low WBC:s, asymptomatic
Reply With Quote