I have now been stage IV for almost three years (Sep. 2011). I have read many posts here that have helped me through some tough times, hopefully my news will help some of you.
I started PD-1 (nivo) in December. I just had my final scans and, thankfully, I responded. The target met (right lung) shrunk from 4.6 sq. cm to 0.42 sq. cm (90%) and the smaller met (left lung) is gone.
Furthermore, today I had my brain MRI and my brain is clear. I had craniotomy #2 one year ago today (June 25) and my brain has been clear since.
Thank you so much for sharing your great news with us here. I know I’ve followed your journey closely with the ups and downs (roller coaster is the best word to describe it!) and now you’ve reached some equilibrium. Enjoy this moment and every moment to come!
Brendan – Thank you for this good news. I am coming up to my second set of scans since I started the PD1 trial. My first set of scans showed stable disease. I get really nervous coming up to scan week, which is this week. My main one is in the mediastinum area aka lymph node (or retrotracheal or paratracheal lymph node). Another One on my adrenal gland and two in the gall bladder. I had one in each lung that have disappeared after my first treatment called TIL. It is good to read your post. I needed to read this going into my next set of scans.
Sorry so long to get back on the site. My scans showed stable in all areas except the node in my mediastinum area grew a little. The doctors feel that it is “tumor flare.” Which means your tumors can grow a little before they eventually get attacked. The doctors are pleased with my results and call me “stable.” Even though the mediastinum grew it didn’t grow a lot. Personally, it scared me knowing something is growing, (it grew 2 cm on one end) but it is reassuring and the doctors give me convincing hope it is “tumor flare.”
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