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phil · 08-02-2012, 06:59 AM

My wife is doing excellent on t dm-1 , in her 21st month. wirks best in straight up high her2 overexpression, but may not work as well w/ other hormone factors mixed in , ER + for ex.
My understanding is that Gen. pays for the drug itself in comp use, but ins, must pay for scans, labs etc.
If you are in NC, are you near Duke ? Thats where the principal investigator for EMILIA, Dr. Kim Blackwell, did her work. So thyey may do comp use quicker.
If you are in NC, call your Sen Hagans office , ask for the aide who works w/ healthcare issues, and call their counterpart in thier DC office. She seems to be intersted in helping cancer pts , is sponsoring a Bill , the TREAT ACT , to overhaul FDA approval process. She is on HELP Committee , which oversees FDA. Remember, if This FDA had done its job in 2010, T DM-1 would have been approved then. And we wouldnt be in this struggl;e. Put in a word for us as activists w/ Sen Hagan. my wife , Lorraine , and I, Phil McCartin, are well known by our senators staff, Sen. Kerry, ( megan thompson ) Sen. Brown ( chris holt ) . We have asked thier staff to arrange for us to meet w/ Sen hagan about her Bill. But we are not from her home state , so its dragging out . Good luck. have your Sen. push your hospital IRB too , ( internal review board , who approve " off protocol ", and comp use at thier facility ), and push your ins co , if they give you trouble . We had our Sen offices call Gen. , and later our hospital IRB , it helps to let Big Business, Big Govt, Big Hospitals, and Big Ins , know that they are being watched for thier roles in the War On Cancer . think about contacting media too, to expose the awful hassles that curent comp use bureaucracy causes us.
So if your hosp[ital drags it out much more, maybe sw itch to a research hosp like Duke ? if your wife hasnt been on navelbine before, it worked for my wife for about 9 months, ( tykerb worked for about 6 months , s/e were bad, i think comp use may only require a2 week washout ?, and i dont hink using tyk or nav precludes comp use ? , not sure ). good response w/ Nav. or Tyk gets you closer to the t dm-1 approval time-frame . Maybe by Dec. We activists will continue to Push This FDA to make it evn quicker .

08-02-2012, 06:59 AM	#15
phil Senior Member Join Date: Nov 2010 Posts: 393	Re: Anxiously Waiting My wife is doing excellent on t dm-1 , in her 21st month. wirks best in straight up high her2 overexpression, but may not work as well w/ other hormone factors mixed in , ER + for ex. My understanding is that Gen. pays for the drug itself in comp use, but ins, must pay for scans, labs etc. If you are in NC, are you near Duke ? Thats where the principal investigator for EMILIA, Dr. Kim Blackwell, did her work. So thyey may do comp use quicker. If you are in NC, call your Sen Hagans office , ask for the aide who works w/ healthcare issues, and call their counterpart in thier DC office. She seems to be intersted in helping cancer pts , is sponsoring a Bill , the TREAT ACT , to overhaul FDA approval process. She is on HELP Committee , which oversees FDA. Remember, if This FDA had done its job in 2010, T DM-1 would have been approved then. And we wouldnt be in this struggl;e. Put in a word for us as activists w/ Sen Hagan. my wife , Lorraine , and I, Phil McCartin, are well known by our senators staff, Sen. Kerry, ( megan thompson ) Sen. Brown ( chris holt ) . We have asked thier staff to arrange for us to meet w/ Sen hagan about her Bill. But we are not from her home state , so its dragging out . Good luck. have your Sen. push your hospital IRB too , ( internal review board , who approve " off protocol ", and comp use at thier facility ), and push your ins co , if they give you trouble . We had our Sen offices call Gen. , and later our hospital IRB , it helps to let Big Business, Big Govt, Big Hospitals, and Big Ins , know that they are being watched for thier roles in the War On Cancer . think about contacting media too, to expose the awful hassles that curent comp use bureaucracy causes us. So if your hosp[ital drags it out much more, maybe sw itch to a research hosp like Duke ? if your wife hasnt been on navelbine before, it worked for my wife for about 9 months, ( tykerb worked for about 6 months , s/e were bad, i think comp use may only require a2 week washout ?, and i dont hink using tyk or nav precludes comp use ? , not sure ). good response w/ Nav. or Tyk gets you closer to the t dm-1 approval time-frame . Maybe by Dec. We activists will continue to Push This FDA to make it evn quicker .