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systemic Mastocytosis

slu
0 Recommendations

My husband has been diganoised with this disease 6 yrs ago. The Dr. really didn't know how to even treat it. Finally after many changes of Dr.'s we went to the Moffit cancer center. The Dr. we got was the proffesor of hemetology, he was wonderful. He started my husband on Gleevac. He was the only one who really gave us hope. I wanted to share this with others who have this disease all, most Dr.'s just want to put you on steriod and that isn't the best thing .

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Cancer Mastocytosis

3 replies

Poetessa

Your husband is so lucky that he is a candidate for Gleevec, I am not because of the Kit 816 mutation (??) or whatever it's called!! That was one of the first things they tested me for. How is it working and is he feeling better?
I truly hope it's doing the trick for him!!!
Healing Hugs!!

Gman206

My Kit also didn't allow for Gleevec, but I hear if you can take it... it is a life saver. Best of luck and glad you found a good Dr they are rare breeds.
Smiles to you,

Gilbert

CSIII

So glad you found a doctor that is helping you. He is one of a very rare breed. Maybe you can clone him and send the clones all over the country? Many of us have gone to so many doctors just to try to be diagnosed. I know I have been to about every ...ist that there is. So many of them seem to be wearing blinders and can't see outside the box. And don't get me started on insurance companies. 'Nuff said. Hoping all have had a good day and have a restful night. My best to all. Dale

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