Deb W Posted August 11, 2020 Share Posted August 11, 2020 Hi everyone, I am excited to report that my Oncologist said the scan was clear today. He didn't use the words NED - so I'm not sure if clear means the same thing as NED. I started the maintenance plan which is Alimta & Keytruda and then eventually drop the Alimta (not sure how many treatments before he drops it) so I'm hoping the extreme fatigue and nausea lessens. I also want to mention that there are a lot of reports that indicate Keytruda isn't effective when your PDL-1 is only 10%. That was not the case for me. Even with having the MET mutation - there are reports that say it is not effective. For me this regimen of Carbo/Alimta/Keytruda has been very effective. Later, if I were to have another recurrence, I have Trabecta. I asked him a question that's been bothering me for a long time and that is... why I went from October NED and in April I was stage IV. How could this be a slow growing tumor? He then looked at my pathology report from the surgery in March 2019 (done at a different facility). He said they only tested 8 lymph nodes and should have tested more than 10. So I wonder, perhaps if the cancer was in my lymph nodes since that time? I guess it doesn't matter now, but shouldn't there be a standard number of lymph nodes tested after surgery? I mean why is it different for some med centers? Here's what bothers me about my oncologist - he'll say maintenance is 2 years unless you want it longer? WHAT? I'm not the expert here. When I asked if I would have radiation he said he can check with the tumor board and see what the recommendation would be....but there is a risk of damage to the lung. I'm not qualified to make these decisions. Also, he said we can do the Keytruda every 3 weeks or double it and have it done every 6 weeks... again, I just want to know what's best. Thanks for all of your support. Deb LUNGevityKristin, GaryG and jack14 3 Quote Link to comment Share on other sites More sharing options...
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