Has anyone been on TDM-1 for more than 2 years?

[phil]

fern and I have talked regularly, and I left her a message w/ our thoughts. its nice to hear from so many that are doing so well, 4 yrs !! I don't know how " expert " I am , so many on the boards are more scientific, more adept at finding , reading trials. I am an " expert ' in how This FDA since 2009 has slow-tracked life saving drugs , cost thousands of lives. you all are " Living Proof " of how their System is too slow, and ignores Stage IV Rights.
OK , speech over for now . Fern, our trial lets you reduce to 2.4. maybe try that . we have good ins., so we may get off trial to get more flexibility - every 4 weeks for ex., but our doc made a face and said 4 weeks is "not standard " , and made it sound like she'd need her superiors ' approval. so check w/ your doc. each hospital is different. check ins. co. rules. we have strong rules here re ins .coverage. we are a universal health care state.
so far we have gotten exceptions a no. of different times to get tx' ed every 4 weeks , sometimes 5 weeks. based on low plats. and we welcome them , want more breaks in tx. so we stay on the trial ( extension study ) for now. Lorraine has few s/e - plats in 60's to 70's, fatigue, neuropathy in feet.
we are afraid to reduce , fear cancer may come back, for L. Herceptin alone was never enough .but..maybe cancer is truly gone ? so we go on, cts last week were again ned, next ctts in Nov. 2 full yrs ned will come in Nov., 3 yrs overall great response will also come in nov.
I might try herc/perjeta. 2 pathways shut off. herc/tykerb involves tykerb , w/ its diarrhea , not pleasant qol . Good luck , happy to talk more anytime !