HER2 Support Group Forums - View Single Post - My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...)

phil · 07-02-2013, 01:00 PM

Welcome to this site. Lots of great experience, advice to share . You will still have to sift through some opinions . i favor aggressive tx for aggressive cancers , including those w/ high overexopression of her2 , like your wifes'. my wife was a 6 on FISH scale. She did not want to know her stage , said " I am Not A Statistic ". Thats' how she chose to fight. So I did the research, I knew the " odds ", and we made a good team. She still hesitates to surf the bc boards. she does , but she is a very emotional person, and lost her first husband, and beloved mom to cancers too young. She , and all of us are PTSD Survivors. Fight or Flight , or a little of both . thats ok.
My wife is one of the " super -responders "to T DM-1 ( kadcyla). She was very late stage iv when she got it in a trial in late 2010. she has been NED ( no evidence of disease ) since Nov., 2011. The QOL ( quality of life ) is the best so far , by far , for her. It is not a cure -all for late stage iv, but is impressive, and its stats will only go up now that anyone who progresses on a taxane , can get it.
I strongly recommend that pts with her2 get tx at a research hospital, w/ bc specialists. or at least a 2nd opinion. tx it aggressively , my wife Lorraines' cancer was kept contained to the liver area for 4 yrs , until t dm-1 could kill it. MGH in Boston flat out saved her life . to get her to t dm-1.
call Genentech in San Fran., , or google www.accesssolutions.com , i think. see about an adjuvant trial. it would be what i would do, if available. a trial will randomize some pts to tdm-1, some to another comparative tx., like TAC or TCH , perhaps. so those who dont get t dm-1 will get an aggressive tx ( ask your onc about comparison drug combo, some pharma co.'s avoid choosing the strongest competitor combo to make theirs look better ) ,. If they progress on TCH , or other taxane combo, they can switch to t dm-1. altho the initail excitement about tdm-1 has faded a bit, even now t dm-1 is the best tx for metatstatic her2 . seems like 30% of late stageiv her2 pts get the super -response Lorraine got, 30% more get a very strong response ( 6 months - 2 yrs ), about 40% do not get a response. as i said thiose stats will go up , and it will prove to be superuor to herceptin alone, and probably current approved combos , as they are not targeted chemos, but system - wide. w/ all the nasty s/e to boot. and better txs are coming soon.
Lorraine has had a power port since 2006, saving her arms and hands from needles, definitely in favor of that too. Good Luck, God Bless !

07-02-2013, 01:00 PM	#19
phil Senior Member Join Date: Nov 2010 Posts: 393	Re: My Wife Rachel Was Just Diagnosed With HER-2+ Breast Cancer (Please Help ...) Welcome to this site. Lots of great experience, advice to share . You will still have to sift through some opinions . i favor aggressive tx for aggressive cancers , including those w/ high overexopression of her2 , like your wifes'. my wife was a 6 on FISH scale. She did not want to know her stage , said " I am Not A Statistic ". Thats' how she chose to fight. So I did the research, I knew the " odds ", and we made a good team. She still hesitates to surf the bc boards. she does , but she is a very emotional person, and lost her first husband, and beloved mom to cancers too young. She , and all of us are PTSD Survivors. Fight or Flight , or a little of both . thats ok. My wife is one of the " super -responders "to T DM-1 ( kadcyla). She was very late stage iv when she got it in a trial in late 2010. she has been NED ( no evidence of disease ) since Nov., 2011. The QOL ( quality of life ) is the best so far , by far , for her. It is not a cure -all for late stage iv, but is impressive, and its stats will only go up now that anyone who progresses on a taxane , can get it. I strongly recommend that pts with her2 get tx at a research hospital, w/ bc specialists. or at least a 2nd opinion. tx it aggressively , my wife Lorraines' cancer was kept contained to the liver area for 4 yrs , until t dm-1 could kill it. MGH in Boston flat out saved her life . to get her to t dm-1. call Genentech in San Fran., , or google www.accesssolutions.com , i think. see about an adjuvant trial. it would be what i would do, if available. a trial will randomize some pts to tdm-1, some to another comparative tx., like TAC or TCH , perhaps. so those who dont get t dm-1 will get an aggressive tx ( ask your onc about comparison drug combo, some pharma co.'s avoid choosing the strongest competitor combo to make theirs look better ) ,. If they progress on TCH , or other taxane combo, they can switch to t dm-1. altho the initail excitement about tdm-1 has faded a bit, even now t dm-1 is the best tx for metatstatic her2 . seems like 30% of late stageiv her2 pts get the super -response Lorraine got, 30% more get a very strong response ( 6 months - 2 yrs ), about 40% do not get a response. as i said thiose stats will go up , and it will prove to be superuor to herceptin alone, and probably current approved combos , as they are not targeted chemos, but system - wide. w/ all the nasty s/e to boot. and better txs are coming soon. Lorraine has had a power port since 2006, saving her arms and hands from needles, definitely in favor of that too. Good Luck, God Bless !