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Old 12-11-2012, 07:54 AM   #4
phil
Senior Member
 
Join Date: Nov 2010
Posts: 393
Re: TDM1 dosage

I can't emphasize enough that we must speak up for ourselves w/ these large entities , whether it be Pharma , FDA , etc. More flexiblity in tx , if we are getting a response , even mixed response. extra time for counts to recover. we had to fight down in Va. to stay in eap after Lorraines palt counts crashed w/ sepsis. sepsis from stents put in prior to t dm-1 . nothing to do w/ t dm-1 . we got an exception that took 9 weeks for plats to get to about 50,000. that decisionwas apparently controversial w/ some of the higher ups in eap , but it WORKED ! we have since taken extra time beyond 3 weeks many times. we now can wait a week or so beyond 3 weeks . we had to fight for it , we shouldn't have to , if its working . These are Stage IV Rights issues that we will continue to fight for.
T DM-1 will soon be approved , which should give more flexiblity , it would be nice to pair it up w/ perjeta, or estrogen blockers , but I fear that This FDA will continue to be rigid . Right now Stage IV's can't get perjeta except of -protocol
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