Good morning. My wife, Karen is about to end her courses of Midostaurin having been in remission for almost 12 months. We were originally told that Karen would have 2 years of Midostaurin before being taken off it. The consultant had informed us that N.I.C.E. Have only approved it for 12 months and that although Karen will continue to be monitored for the next 12 months with bone marrow biopsy's and blood tests every 3 months that is it! We are concerned that AML could return especially as Karen has the FLT3 mutation. Has anyone gone through this process and what, if any, were the effects of withdrawal from the drug.
Hi again Tahkah I had a quick look through the site using the search tool 
near he top and only found a handful of hits on Midostaurin but a few of these were years old.......but let's look for any member looking in with experience to pick up on your post.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444 that may have some inforamtion.
