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Lonsurf

richnkim
Posts: 28
Joined: May 2017

My husband was diagnosed with Stage 4 Intrahepatic Cholangiocarcinoma(bile duct cancer) with mets to the lungs a year and a half ago. He has done chemo and 2 clinical trials, kicked off both trials because of growth. This last trial he was on was TAS120 for the FGFR2 mutation just had CT Scan and it showed new tumors in his lungs, a couple new ones on his liver, lymph nodes around his heart and the lining of his stomach. He needs to go though a 3 week "wash-out" period and then the doctors at Mayo in Rochester want to start a new trial TAS102-Lonsurf. I know this drug (Lonsurf) has been FDA approved for colon cancer but now they are trying to get it approved for gastric cancers too. My question is for anyone whose been on this drug what where the side effects, is this chemo as harsh as Gem/Cis and most important did it work for you. This trial is a long shot for him but there is nothing else out there for his cancer because it's so rare they don't do alot of clinical trials, his only other drug would be Keytruda and he does not have the right markers for this drug but sometimes it does still work, we always thought this would be his last choice, just don't want it be his last choice so soon. Thank you for your help.

Trubrit's picture
Trubrit
Posts: 4298
Joined: Jan 2013

I know my friend in England was on Lonsurf. The side effects were rough, but I don't know what they were, and sadly he is no longer able to answer any emails/messages. 

I believe there are folks here who have been on the Lonsurf, and hope they will come along soon and help you out. 

I wish your husband the best, as he moves forward with his treatments. 

Tru

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