my wife has done very well on t dm-1 for over 3 yrs. she is ned. she was on a trial until last month. we left voluntarily to get more flexibiblity . didn't want to to be pushed by trial rules to get tx every 3 weeks. we want more breaks. it would help if u were specific about the hurdle. is it a s/e affecting trial rules ? or a re-ocurence of the cancer . that would be trickier in a trial, altho the fact that u in England are behind us w/ this drug is an issue. the trails for this very effective drug have dragged on for yrs and yrs. ridiculous. we stage ivs' should have more flexibility - to add perjeta to t dm-1 and see if re-occ. is halted . or tykerb.
we have had to fight to stay on the drug since early on, learned to be a " squeaky wheel ". always using the ' response card ", we are getting good response , in our case ned , or in other pts stability , so we pushed to stay on . first it was low platelets , aggravated by sepsis related to old stents put in from previous cancer that t dm-1 wiped out. so we argued for extra time, arguing that sepsis aggravated plat. issue. and they gave it . we reduced dose to 3.0, but fought lowering it any further , based on response. we argued to get drug when plats went below 50,000 even tho trial rules said 75, 000. and we were part of change in rules that allow tx below 50,000. we went to the Press and our pols early on as we had to travel to Wash. DC from Boston to get the drug. see my wife Lorraines ' story at
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