jackson22

Thank you for your comment. Initially they mis diagnosed as mucosal. No BRAF mutation unfortunately. The tumor was removed and one lymph node positive, the second negative. The recommendation was to not remove remaining lymph. 3 months later on PET and another lymph node positive so had completelymphadanectomy. 3 months out from that. now have metastatic disease in liver and lungs. When stage 3 I was looking at clinical trials involving keytruda. Now stage 4, it's time for keytruda. I really hope stage 3 is no longer a wait and watch recommendation. This seems to be a very aggressive disease and timing is everything. Best of luck to you. 

Thank you for your comment. Initially they mis diagnosed as mucosal. No BRAF mutation unfortunately. The tumor was removed and one lymph node positive, the second negative. The recommendation was to not remove remaining lymph. 3 months later on PET and another lymph node positive so had completelymphadanectomy. 3 months out from that. now have metastatic disease in liver and lungs. When stage 3 I was looking at clinical trials involving keytruda. Now stage 4, it's time for keytruda. I really hope stage 3 is no longer a wait and watch recommendation. This seems to be a very aggressive disease and timing is everything. Best of luck to you. 

Thank you for your comment. Initially they mis diagnosed as mucosal. No BRAF mutation unfortunately. The tumor was removed and one lymph node positive, the second negative. The recommendation was to not remove remaining lymph. 3 months later on PET and another lymph node positive so had completelymphadanectomy. 3 months out from that. now have metastatic disease in liver and lungs. When stage 3 I was looking at clinical trials involving keytruda. Now stage 4, it's time for keytruda. I really hope stage 3 is no longer a wait and watch recommendation. This seems to be a very aggressive disease and timing is everything. Best of luck to you. 

Hello, exactly the response I needed.  Thank you so much!  It's great to hear from someone making the exact desisions we are faced with.  I'm waiting on the Keytruda study coord to call me back.  We only had 9 nodes removed but the surgeon said it was "complete"…so will have to talk to them and see.  I am not positive, but I think removing any additional lymph nodes may be a deal breaker. 

I am not convinced we are "cancer free" at the moment even though clinically, that's what we're told.  I like that you included your factors 1-4 and thought process about how you came up with your decision.  Really, we are interested in the best way to "wake up" the immune system and agree that that may be something different depending upon whether there's active disease or not. 

Best wishes to you with Polynoma!  We may end up there with you.  Still some research to do and desisions to make:)

Thank you!

Hello, exactly the response I needed.  Thank you so much!  It's great to hear from someone making the exact desisions we are faced with.  I'm waiting on the Keytruda study coord to call me back.  We only had 9 nodes removed but the surgeon said it was "complete"…so will have to talk to them and see.  I am not positive, but I think removing any additional lymph nodes may be a deal breaker. 

I am not convinced we are "cancer free" at the moment even though clinically, that's what we're told.  I like that you included your factors 1-4 and thought process about how you came up with your decision.  Really, we are interested in the best way to "wake up" the immune system and agree that that may be something different depending upon whether there's active disease or not. 

Best wishes to you with Polynoma!  We may end up there with you.  Still some research to do and desisions to make:)

Thank you!

Hello, exactly the response I needed.  Thank you so much!  It's great to hear from someone making the exact desisions we are faced with.  I'm waiting on the Keytruda study coord to call me back.  We only had 9 nodes removed but the surgeon said it was "complete"…so will have to talk to them and see.  I am not positive, but I think removing any additional lymph nodes may be a deal breaker. 

I am not convinced we are "cancer free" at the moment even though clinically, that's what we're told.  I like that you included your factors 1-4 and thought process about how you came up with your decision.  Really, we are interested in the best way to "wake up" the immune system and agree that that may be something different depending upon whether there's active disease or not. 

Best wishes to you with Polynoma!  We may end up there with you.  Still some research to do and desisions to make:)

Thank you!

Thanks for your response.  Lucky you:)  I am keeping my eye out as supposedly Yervoy is being evaluated by the FDA for for stage 3.  I'm not holding my breath but it would be a nice option to have.  I just called about the Keytruda study in Chicago.  Thanks!

Thanks for your response.  Lucky you:)  I am keeping my eye out as supposedly Yervoy is being evaluated by the FDA for for stage 3.  I'm not holding my breath but it would be a nice option to have.  I just called about the Keytruda study in Chicago.  Thanks!

Thanks for your response.  Lucky you:)  I am keeping my eye out as supposedly Yervoy is being evaluated by the FDA for for stage 3.  I'm not holding my breath but it would be a nice option to have.  I just called about the Keytruda study in Chicago.  Thanks!

Thank you for your response.  Unfortunately this trial has closed for adults.  Open to 12-17 y.o. 

Thank you for your response.  Unfortunately this trial has closed for adults.  Open to 12-17 y.o. 

Thank you for your response.  Unfortunately this trial has closed for adults.  Open to 12-17 y.o.