Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Lottie, thank you for this useful information. My local oncologist set me to Mt. Sinai to see Silverman. He said he is an expert. Has anyone seen or heard of him? > > Dear Katy, > > Wikipedia has this to say about megakeryocytes: > Essential thrombocytosis (ET, also known as essential thrombocythemia) is a rare chronic blood disorder characterized by the overproduction of platelets by megakaryocytes in the bone marrow in the absence of an alternative cause. In some cases this disorder may be progressive, and rarely may evolve into acute myeloid leukemia or myelofibrosis. It is one of four myeloproliferative disorders. > > Fields, the Patient Advocate from Novartis, who is working to coordinate the opening of the study for PKC412 (Midostaurin), a new drug for aggressive mastocytosis. We have some details, although not all of them, but we wanted to share what we know for those of you who are anxiously waiting for information. Here is a website you can go to for more information: http://www.tmsforacure.org/ and another on when the clinical trial will start: http://www.tmsforacure.org/boardnews/2008-04-pkc412-novartis- trial.shtml > > Mastocytosis specifically means " an abnormal increase in the number of mast cells, " but we now know that definition, taken from the root words, relates to some very specific mast cell disorders, and may not apply to others. http://www.tmsforacure.org/patientinfo.shtml > > I hope this helps you understand better what you are up against. According to the research, this is really rare and unusual in your case. It looks like you have 3 separate diseases and possibly Gleevec will be used for all 3. I agree with Tracey, you definitely need to see a CML specialist. > > We also have several patients who go to Memorial Sloan Kettering. I believe Dr. Sawyers is a CML ( and one of the best CML specialist in the country) specialist and now at Sloan. You might want to get a second opinion from the very best. I'm glad you found u because you will need support and we offer it. I wish you the very best. You might want to check with , who is a patient (I think) at Mt. Sinai. > > Blessings, > > Lottie > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.