O.T. – I have been reluctant to share my news because Brein43 and I received our diagnosis at about the same time, & I thought we would be going through this together, with a good outcome for both of us. When the outcome changed for Brein43 I didn’t feel comfortable sharing my good news. It just didn’t seem right, and it hurt a lot when she passed (which seems kind of odd I guess, because I didn’t know her in person) so that is why I have been kind of quiet about all of this. But here it is . . .
I had new CT Scan done and received excellent results on Wednesday. Things are looking very well. The tumors have shrunk overall by 65%; the one in the pancreas is gone completely, & the biggest one in the liver has shrunk considerably. There are no new ones.
JHH study team is extremely happy with these results. They talked about giving me time off for good behavior – an extra week off once in a while between treatments, for example. Another possible change is to lower the dose level. I am at level 3 for the study which is presently the highest, but still lower than what you would receive in standard care. There was talk about dropping me to level 2, but that is kind of my decision and I am not quite ready to go there yet. (With the results being this good so far, I am a little afraid to tamper with it.) Once you go down a level, you cannot go back up; it skews the study research to go back & forth. They assured me it would not change the results I have been seeing, but it could lessen some of the side effects, so it makes it a tempting offer. I just don’t want to make a knee-jerk decision that I might regret. Already did that once, luckily I was able to rectify it later.
February 26, 2016