Since many people have started asking again how Stuart is doing, I thought I would send out another update, particularly since the news is very good! Yesterday Stuart had another chest CT scan. The doctor told us that the scan looked “Perfectly normal” and “There was no sign of effing cancer!” She said, “If I showed your scan to another doctor who didn’t know your situation, he/she wouldn’t see a thing and would report normal findings.” Stuart was given the official NED status (No Evidence of Disease) and told he was in “complete remission.” Woot woot, high five and fist bumps all around!
Of course my reaction and next question was, “So he doesn’t need to take the Crizotinib and we are done here at Dana Farber?” The doctor laughed and said she didn’t want to be a “Debbie Downer” but Stuart is not cured. The cancer is most likely still present but the number of cells are so small that they no longer show up in the scans or cause symptoms. But when Crizotinib has been stopped for “NED” patients, the cancer has always returned. Therefore, Stuart will always remain on this medication, as long as it continues to work. I asked if all the cancer cells could be gone; is that even a possibility? We were told that it’s possible but not something they’ve ever seen. So we will not stop the medication for fear that the cancer cells that are most likely still there will start to grow again, and possibly metastasize to vital organs such at the brain and liver. So even if over time we see no changes, if everything stays as is, we cannot assume the cancer is gone. The unfortunate reality is that at some point the cancer will become resistant to the medication and will return. How long before that happens is the unknown. For some people it’s just a few months, for others it’s a few years. The median duration for those that have had as complete a response to Crizotinib as Stuart is 17 months. We are hoping that he goes well beyond that!
So all in all, we received the best possible news yesterday. The doctors are thrilled with Stuart’s progress, as surprised as we are by his unusually quick and complete remission, and hopeful that continued research will provide equally effective follow on therapies when the time comes. Stuart is feeling great. He is biking almost every day and has returned to doing part time work. He and I want to thank you for your continued support and encouragement. Keep your positive energy coming our way! The next scan is in 3 months (a little reprieve).
With love and special thanks this Thanksgiving,