Thankful this holiday season
There is much to be thankful for this holiday season. Grace continues to improve on her current treatment plan. About two weeks ago on 11/13/18 and 11/14/18, Grace underwent another set of scans, which demonstrate significant improvement (see pictures below). Symptomatically, chemo weeks take a major toll on her both physically and emotionally. Grace has major discomfort and pain with fatigue and no appetite. Emotionally, this has been rough for both of us. However, when it is not a chemo week, she is physically doing very well, and can hike almost 8 miles without any pain or shortness of breath. This is a significant improvement. Prior to undergoing initial treatment in August, she could barely climb a flight of stairs.
From a treatment perspective, we still have much uncertainty. Since her initial 4 cycles of chemotherapy/immunotherapy yielded such significant improvement on the scans, our team made the decision to continue chemotherapy/immunotherapy through 6 total cycles and re-asses with CT and PET/CT scans at the end of December. So, she has one more cycle of chemo left. At this point we will decide between maintenance Keytruda immunotherapy infusions versus enrolling in a clinical trial, but could also bring surgery or radiation to the discussion. Given the aggressiveness of this cancer, our oncologists are thinking outside the box. Historically this cancer has only been transiently responsive to chemo, and there are limited case reports. Our oncologist tells us that most NUT patients stop responding to chemo after 2 cycles, and Grace is also the first patient to receive combination chemotherapy/immunotherapy as initial treatment, so she has done very well.
Next week we will be traveling to Boston to meet with the leading pathologist and oncologist for NUT, and will also see a thoracic surgeon to discuss if surgery will ever be a feasible option.
We are optimistic that Grace will continue to improve. God has blessed us with an amazing group of family and friends. Thank you all for your support and prayer.