I am long overdue for an update on the clinical trial I have been in at NIH. In the past five years the trial has been amended several times as progress is being made. The last treatment I received was in October of 2013. I received about 126 billion mutation reactive t-cells, and that has been what has fought my cc. I have had a great quality of life, with no side effects after treatment.
The end of August this year, I went for my checkup. My tumors had been looking like they were trending upward for the most part of this year, the growth was minor, but the trend was up. The research team made the decision they wanted to do surgery to remove tumors from my right lung to further study them and see what was going on.
In September, I had a thoracotomy on my right lung. Good news is they were able to remove all remaining tumors in that lung. Bad news is it was one of the toughest procedures I have had to date. They were able to study the tumors, re-sequence them, and decide the next plan of action. I still had the same mutation ERBB2IP, and there was still mutation reactive t-cells present at the tumor site. They also did PD-L1 immunohistochemical staining on my tumors. The tumor cells didn't express PD-L1, but were infiltrated with a lot of macrophages that highly expressed PD-L1. Based on these findings they felt it was plausible that the high expression of PD-L1 in the tumor environment could be actively suppressing the high frequency of PD-1 expressing mutation-reactive T cells that are in my tumors.
Based on these findings, they started treating me with Pembrolizumab on October 13th. After my second dose, I had scans done. The scans showed significant shrinkage to the tumors in my left lung.....which is the only place I have tumors left. I will do two more treatments and repeat the scans at the end of December. I am beyond thrilled with these results.
Just for reference, I wanted to tell you that Pembrolizumab has been added to the trial, but was added after I received my cells, so future patients will be getting it with the initial cell treatment. I am technically on a compassionate use protocol off the original protocol since I am the first to get the Pembrolizumab after cell infusion. (3 years after in my case)
Sorry for the long update and explanation and sorry for the delay in updating this post.
Hugs and prayers,