Megakeryocytes

[Guest guest]

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