We got bad news about John yesterday. He’s stepping down off of the steroids too fast and the colitis is coming back. The doctor told us after he got out of the hospital that was a danger since he was putting him on an accelerated step down of 4 weeks instead of 6 in an attempt to keep him in the trial. Now they have to slow down the step down process, increase his dosage of the steroids again, and he won’t be able to continue with the trial next week. He’s not feeling sick, but the symptoms are coming back and we can’t risk that because if the colitis comes back full steam, it’s much harder to treat and can be extremely serious.
There were 2 drugs in the trial when he started and the one that caused the colitis was being discontinued if he had stayed on the trial. The PD1 drug that he was going to continue with should be FDA approved by October so hopefully he’ll be able to continue on it and his gut will be all healed up. Also, after shrinking to almost half it’s original size on the trial, the tumor on his leg has grown again and is bigger than it was when he started the trial.
I’m in Baltimore working with my partner Nancy this week and I won’t be home until Sunday. It’s been emotionally challenging for me to be away from home the past few days through this news, even though he doesn’t need me to take care of him. I’m focused on working this week and checking in with him a few times a day. My boys are keeping an eye on him for me as well. We’ll see his doctor on Monday in Seattle and find out what our next steps are.
All of this is disappointing to say the least. We’re focusing on what we can control and the options that are still available to us and taking things one day at a time. I’m fighting to stay positive because I know the alternative won’t support him or me. This is just a really big setback and frankly, it sucks. We were so hopeful that he’d be able to continue in and complete the trial and that he’d get great results from that. Now we’re back to square one.