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phil · 02-16-2014, 07:28 PM

my wife is doing great on t dm-1, over 3 yrs now. she has been ned over 2 yrs. we have spoken w/ some who are as much as 5 yrs stable or ned. Lorraine is having some liver issues now due to chronic irritation from the drug. varices or swollen veins , around liver , spleen. 3 yrs is along time for any chemo. they do not seem to be acute issues - had a biopsy and will do endoscopy in march. we reduced dose again , to 2.7. originally dose was 3.6, but low platelets led to reducing to 3.0.
most t dm-1 pts get fevers , chills at first . they can be very uncomfortable. for many , incl . my wife , the fevers stop after several tx.'s as body adjusts. for most its more tolerable than older style chemos - no hair loss, usually no mouth sores. its targeted to the abnormal her2 cancer cells only. it saved my wifes life, and the qol is relatively great. she does have low platelets , but reducing dose helped , along w/ diet. she feels her foot neuropathy has worsened on t dm-1 too. all s/e we can live with , figuratively and literally. there are t dm-1 (kadcyla) discussions on Inspire , advanced bc community also . For us a wonderful, miracle drug . my wife and I have an advocacy group , Our Her2Cancer Struggle and a website , stageivsurvivor.webs.com. God Bless, Heal.

02-16-2014, 07:28 PM	#6
phil Senior Member Join Date: Nov 2010 Posts: 393	Re: Starting TDM1 my wife is doing great on t dm-1, over 3 yrs now. she has been ned over 2 yrs. we have spoken w/ some who are as much as 5 yrs stable or ned. Lorraine is having some liver issues now due to chronic irritation from the drug. varices or swollen veins , around liver , spleen. 3 yrs is along time for any chemo. they do not seem to be acute issues - had a biopsy and will do endoscopy in march. we reduced dose again , to 2.7. originally dose was 3.6, but low platelets led to reducing to 3.0. most t dm-1 pts get fevers , chills at first . they can be very uncomfortable. for many , incl . my wife , the fevers stop after several tx.'s as body adjusts. for most its more tolerable than older style chemos - no hair loss, usually no mouth sores. its targeted to the abnormal her2 cancer cells only. it saved my wifes life, and the qol is relatively great. she does have low platelets , but reducing dose helped , along w/ diet. she feels her foot neuropathy has worsened on t dm-1 too. all s/e we can live with , figuratively and literally. there are t dm-1 (kadcyla) discussions on Inspire , advanced bc community also . For us a wonderful, miracle drug . my wife and I have an advocacy group , Our Her2Cancer Struggle and a website , stageivsurvivor.webs.com. God Bless, Heal.