Hi JP!  Welcome to the forum!

I'm sorry, I wish I had something I could say, but I'm not taking this medication and don't know anything about it.

Lisa

I'm not taking it, but if you PM me, I can give you the email for someone who is, and I might be able to find a phone number for another person.  I think if you contact the principle investigator of the study, they can put you in contact with people who are currently taking it.

It's use, for those who don't know, is for aggressive systemic mastocytosis, and it is also being tried on other types of blood cancers.  It kills mast cells at a certain stage, but not before they've reproduced, so it's not considered a cure, but rather provides control and lessening of symptoms.  One person has had his liver and spleen return to normal size and tryptase levels are down.  

In the U.S. there are strict criteria that one must meet in order to be included in the study, and a BMB and other tests must show positive for aggressive disease.  The side effects have been tolerable in the two people I know who are using it, and the benefits tremendous.  I believe both have been on it for more than a year.

A lot of info is available on the studies (some now in phase III, I believe) if you Google either midostaurin or PKC412 (it's earlier designation).  My understanding is that it works on people with the C-kit 816 gene defect.