Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> has any one use gleevec http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1297985582 Message started by vaughan7 on 02/17/11 at 11:33:02

Title: has any one use gleevec
Post by vaughan7 on 02/17/11 at 11:33:02

just wondering if anyone has yous'ed gleevec for mast cell activation

Title: Re: has any one use gleevec
Post by Lisa on 02/18/11 at 03:13:10

I have not, and I believe that gleevac is only used on SM patients who show some kind of aggressive activity.

From what I have read, which isn't much, doctors have found that masto patients don't respond well to chemotherapy or even bone marrow transplants. It doesn't seem to improve or halt progression of the disease, so they avoid doing any kind of treatments like these upon us for fear of making us worse. Gleevac has seemed to show some help to some aggressive patients and they are also trying new experiemental options as well and these seem to be promissing, but these again are on the neoplastic SM patients showing aggressive disease. To the best of my knowledge there are no MCAD patients who have been given these meds. There could be 2 reasons for this - one is that MCAD is a brand new diagnosis and no research has yet been done into this. Two is that without knowing the cause of the activation there is no adequate means of combating it. It's an unstudied disease as yet and until the researchers begin looking specifically at MCAD patients they don't know to do anything other than keep an eye open for aggressive disease and treat the symptoms.

So Vaughan, if your doctors are thinking of doing this with you, you should speak with an authority before giving an okay on this. This is what I would recommend.

I hope this helps,

Lisa