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Old 02-20-2014, 10:45 AM   #19
phil
Senior Member
 
Join Date: Nov 2010
Posts: 393
Re: Has anyone been on TDM-1 for more than 2 years?

The varices were picked up on 4 month ct scan 2 scans ago - 6 months . splenetic varices ( spleen ) were mentioned , buried in body of report. noone noticed. i think because they are small and as our onc says now, " we all have been focused on looking for cancer " . then in next scan in Dec. i saw a mention now of esphoageal varices, and splenetic . again buried in the body of the report . radiology focus on an" opacity ' in a lung which turned out to be nothing. plus mention at length of no mets seen anywhere. which is great but...from my work as an addictions specialist i recognized esophageal varices , as they are common in late stage alcoholics , when they are extremely swollen and rupture you die. so, i asked , and the onc and nurse looked at it again , and sent us to a liver specialist . he checked all scans closely , knew what he was looking for , and told us they were there since late 2011, about a yr on drug. he ordered biopsy , but noone seems acutely alarmed, which is good.
so anyone w/ long term liver irritation, from t dm-1, plus a hx of a lot of liver mets, which is lorraine , should make sure liver scans are looked at closely. because of low plats , L. has taken many breaks from the usual 3 week cycle, 4 -5 weeks , and she has been on a reduced dose at 3.0 since near beginning ( 8th does on ) . that may have helped keep thse varices small. know your hx ., and check w/ your doc accordingly. i heard of a pt. who had a great response for 2 yrs from herc/perjeta , had a hx of bone mets, yet their doc stopped annual bone scans , for over a yr., now has significant bone mets back . now on t dm-1.
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