Disease Progressing and Trials

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Disease Progressing and Trials

by Sch1979 on Sun Mar 17, 2019 09:40 PM

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Background: Diagnosis was in April 2018, treatment was keytruda/alimta/carbo.  First scan showed it was working very well.  Dec. 2018 scan showed mixed results. The oncologist did not believe that the mixed results showed that the treatment was not working.  There was some growth, but also a lot of reduced activity, so we continued on alimta/keytruda maintenance.  Unfortunately, the March 2018 scan showed the disease progressing and the oncologist now agrees the treatment is no longer working. 

She is recommending taxol or a clinical trial.  We have an appt at NYU tomorrow to see if we can get into the poziotinib trial.  I've been in touch with Marcia from the exon20 group and she's now given me some info on other trials like the TAK-788 trial at Sloan (which she believes is closed) and the Tarloxotinib trial that is about to begin at the Lombardi Cancer Center.  We are also in the process of getting a second opinion from Sloan Kettering (we got our initial second opinion from them in April 2018, but decided to not go with them because they missed the exon20 insertion diagnosis and were not going to treat with immunotherapy as a result - they apologized, but it was hard to pick them for treatment after that.)

I'm just wondering when all this is said and done and we have information on all these trials, how do we choose the best course?  Are people responding to poziotinib or is taxol the safer option?  I'm a little bummed out because we did not get much direction from the oncologist.  No one seems to have any definitive answers, or frankly, even recommendations. :o(  The oncologist said that she would pick a clinical trial, then taxol, but that just seemed so odd to me to say given she did not know anything about the trials available.  Wouldn't one have to research each one in order to opine that one of them is better than the other (and/or taxol)?  Or is she saying that because taxol is not likely to work?

Any advice would be greatly appreciated. 

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