Want to Stop Treatments

[katherineann59]

Has anyone had the urge to just stop their treatments and live as "normal" a life as possible for as long as possible? These are my thoughts right now. In fact, I started a round of Vidaza on Monday. By Wed., I was feeling so sick that I decided to skip treatment on Wed and Thursday. My feeling right now is to not continue treatments and see what happens. I know they have meds to help with nausea and these help with the nausea, the problem with these, though, is that they make me so very tired I am almost unable to go about my daily activities which include teaching full-time and helping care for my grand daughter. I know I need to talk with the doc and treatment nurses, but I am worried that they will give me grief for discontinuing treatments. Has anyone been in this situation and, if so, how did you deal with it? Thanks. I've been receiving Vidaza treatments monthly since August of 06 and the doc says these need to continue indefinitely.

[Birgitta-A]

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