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Hello Barb and Julie... I started out with just leg cramps about two years ago... things progressed on from there.
I have been calling around asking if any of the researchers at Genentec or from UCLA, the big research hospitals in Texas have looked at long term use, and so far have not found anyone.
I was told after a year... it is not cost effective to keep a drug study going.
I am making plans to have an apt. if not with Dr Slaman than one of his associates and discuss what seems to be happening to me now.
My Oncologist was sending out an e mail to about 90 some other Dr's to see if they have any Herceptin patients with these muscle effects showing up. I am also trying to gather some information about other long term users by posting here and in other places or any way I can, to get enough information to excite an interest in studying this.
The jist of their answers has been "well they have most all died, so the long term hasn't been studied".
I have a need to know about long term effects and a need to know how long I need Herceptin? For how long will I keep cancer free... No one really has looked into this and we are living longer, and we need answers... So please if you know of anyone else on Herceptin who has these symptoms, lets ask them what they are experiencing? What has helped?
Let's see if we can get information to encourage a researcher to care.... thanks Marily
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