Justin Posted May 21, 2021 Share Posted May 21, 2021 Just went over the results of my MRI and CT scans with my doctor at Dana Farber after about 5.5 weeks of treatment. I'm participating in the FLAURA2 clinical trial which combines Tagrisso with carboplatin and permetrexed every 3 weeks. All my bones mets have healed and my affected lymph nodes have shunk significantly most to a normal size. My primary tumor in my left lung shrank a few millimeters (it was 28mm at it's largest) but my doctor thinks that it's actually smaller than it looks as there is scar tissue as it shrinks which will still show up on the CT. My two tiny brain lesions looked like fuzzy pixels on the screen so they're very small. I can't believe I've come this far in such a short amount of time but trying to keep in mind that it's a marathon and not a sprint. Hopefully I'll continue improving! Link to comment Share on other sites More sharing options...
Judy M2 Posted May 21, 2021 Share Posted May 21, 2021 Congratulations, that's great news! Are you going to the Dana Farber Chen-Huang Center for EGFR Mutant Lung Cancers in Boston? I just saw their presentation and was impressed with their team. Link to comment Share on other sites More sharing options...
Justin Posted May 21, 2021 Author Share Posted May 21, 2021 Thanks! The clinical trial I'm in is being run by Dr. Pasi Janne who is the director of the center and helped discover the EGFR mutation although I don't think it's officially connected. The fact that they established the center means that I'm at the right place for treatment. For those that aren't familiar: https://www.dana-farber.org/chen-huang-center-for-egfr-mutant-lung-cancers/ Link to comment Share on other sites More sharing options...
Rower Michelle Posted May 21, 2021 Share Posted May 21, 2021 Yay, Justin! That’s great news! Link to comment Share on other sites More sharing options...
TJM Posted May 21, 2021 Share Posted May 21, 2021 Absolutely fantastic. Love these kinda posts Peace Tom Link to comment Share on other sites More sharing options...
Tom Galli Posted May 21, 2021 Share Posted May 21, 2021 Justin, Simply superb! It is a delight to read a good news post. Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted May 21, 2021 Share Posted May 21, 2021 Fantastic news! As someone just starting in a clinical trial, myself, I love hearing success in the research field! Congrats, and keep it goin'! Link to comment Share on other sites More sharing options...
Judy M2 Posted May 21, 2021 Share Posted May 21, 2021 Justin, I saw Dr. Janne speak, along with his team. You're in great hands! Link to comment Share on other sites More sharing options...
Justin Posted May 21, 2021 Author Share Posted May 21, 2021 2 hours ago, Judy M2 said: Justin, I saw Dr. Janne speak, along with his team. You're in great hands! He actually sat down with me one on one to discuss the trial and answer my questions before I decided to participate. I can't say enough how great everyone at Dana Farber is! Link to comment Share on other sites More sharing options...
Robert A. Posted May 21, 2021 Share Posted May 21, 2021 Awesome news!! Link to comment Share on other sites More sharing options...
LouT Posted May 22, 2021 Share Posted May 22, 2021 Justin, It sounds like your treatment is hitting on all cylinders. Great news and keep up that positive spirit, it can only help you. Lou Link to comment Share on other sites More sharing options...
Justin Posted June 16, 2021 Author Share Posted June 16, 2021 One question I have is on the scar tissue. I was told that as the tumor shrinks it will leave scar tissue that will neve go away so there's no way to know if it's dead or alive on a CT scan. How does that work for people that are NED? Is there an option for radiation just to make sure? Link to comment Share on other sites More sharing options...
TJM Posted June 16, 2021 Share Posted June 16, 2021 If it's not a PET scan I believe they go by changes between CT scans. But I've been a tad concerned about that whole issue since last fall when two docs said my cancer was back and two said it was scar tissue. One of the docs who said scar tissue was my pulmonologist...who is my rock. She took the time to review the scans to my hearts content. I trust her and she convinced me. I'm likely switching providers after this year. Link to comment Share on other sites More sharing options...
Justin Posted June 16, 2021 Author Share Posted June 16, 2021 I was told that the only way to really know is take another biopsy. In your case perhaps it's worth it if it's really a question of whether your cancer is back or not. Link to comment Share on other sites More sharing options...
LouT Posted June 17, 2021 Share Posted June 17, 2021 Justin, If you have doubts and this is of concern to you then you can request a biopsy from your doctor/team or another definitive test that will put your mind at ease. I have heard of different people on this forum who have scar tissue, so it is not as rare as you may think. But, again, do what you need to in order to feel confident. Lou Link to comment Share on other sites More sharing options...
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