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Keytruda/Alimta/Carbo failed - options?


sch1979

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Background: NSCLC EGFR Exon 20 insertion. 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. 

The oncologist is recommending taxol or a clinical trial.  We have an appt at NYU Langone 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 Kettering (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 Sloan in April 2018, but decided to not go with them because they missed the exon20 insertion diagnosis and as a result were not going to treat with immunotherapy - 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 it just seems so odd to me for her to say that given she did not know anything about the trials available.  Wouldn't one have to research each trial in order to opine that one of them is better than the other (and/or taxol)?  Or is she saying to go with any clinical trial we can because taxol is not likely to work?

Any advice would be greatly appreciated. 

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Hi there,

Coming to a fork in the road, treatment-wise, is so scary.  Try not to read into what your docs are saying, instead, ask them.  Your doc might tell you that she is recommending a trial because taxol will likely be an option in the future.  Trials may not.  Trials are pretty specific to the types of patients they are looking for.  One small change in your overall health may make you ineligible.  I am not recommending one over the other and don't know what option is right for you, but perhaps asking your doc why she is recommending one over the other might reduce your anxiety about the choice.  

Take care,

Steff

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Hello, 

I'm sorry the triple combo hasn't been effective.  It's hard in "mutant land" to know what the most effective treatment is given the options that are available (which is overall good news-the fact that there is more than one option).   I'm an Alkie mutant and I can share with you what my doc's guidance has been when there's disease progression as it pertains to clinical trials and chemo.  Our first option would be to exhaust the "nib" inhibitors then go to clinical trials with chemo as the last resort.  The idea being that some of the clinical trials have breakthroughs where there could be  access to more effective treatment faster.   It doesn't mean that chemo won't work, just that the trial may offer a better alternative. 

I don't expect my doc to be on top of the clinical trials ( I don't see how they can with their work load).  Right now for example there are over 200 ALK studies and a quick review of EGFR suggests there are over 900 clinical trials.  Seems like that's too much to keep track of when the reality is 80% of clinical trials fail.   So for my treatment plan, the doc would review the studies and  make a recommendation based on my health status.  

A second opinion seems like a smart idea.   Please keep us posted on what you decide. 

Michelle 

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Thanks Michele and Steff.  We met with Dr. Valcheti at NYU Langone today and it seems poziotinib is not accepting patients who have had the carbo triplet, and TAK-788 is also not an option.  Dr. V was pushing JNJ-372 (JNJ-61186372) (Phase 1) and we are also looking at the tarloxotinib trial in DC (Phase 2).   If anyone know anything about either, please let me know.  

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