Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl New Mast Cell Research, Studies, and Trials >> New Mast Cell Research, Studies, and Trials >> midostaurin trials http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1298236347 Message started by jp on 02/20/11 at 09:12:27

Title: midostaurin trials
Post by jp on 02/20/11 at 09:12:27

I would like to hear from anyone who has, or is currently being treated with midostaurin. Specifically what your experience has been

Title: Re: midostaurin trials
Post by Lisa on 02/20/11 at 09:33:38

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

Title: Re: midostaurin trials
Post by Lindy on 05/05/11 at 19:34:48

http://www.cancerhelp.org.uk/trials/a-trial-looking-at-midostaurin-for-mast-cell-leukaemia-or-systemic-mastocytosis

Title: Re: midostaurin trials
Post by Joan on 05/05/11 at 21:07:43

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.

Title: Re: midostaurin trials
Post by Lisa on 05/08/11 at 01:49:09

At least there is SOMETHING!!!