My hubby just finished his 2nd cycle and had his first CT scan on Monday, 7.12. The recist results show stable disease for the target lesions and progressive disease for the non-target lesions. We were told when he entered the trial that the first scan may show enlargement, but this does not always indicate failure as the 2nd scan may show shrinkage. He has no new lesions. We are continuing on the trial and they have moved up the next scan for one month, Aug. 12. The Entinostat dosage was reduced from 5mg to 3 mg weekly due to side-effect profile; it was reducing his quality of life (exhaustion, woozy, abdominal pain) and he was actually becoming depressed (very unusual for my husband). The reduction has already been better as the side-effects were decreased greatly. His bilirubin rose slightly, but is still within normal and his ca 19-9 has risen, but it has not doubled. We continue to feel very hopeful.
Is anyone else on this trial? I believe it is only offered at Johns Hopkins.
Thanks for letting us all know about this trial and that your husband is on it. I will of course keep my fingers crossed for him and for the best possible outcome for him as well. I assume that his onc is aware of the side effects that your husband is experiencing right now and hopefully he will be able to cope with them.
Thanks loads as well for offering to keep us all updated on his progress, thats great. But please do not feel any pressure or anything to post and stuff as you will have a lot to deal with with all of this.
This is the trial my husband has begun after having to leave the Pemigatinib (INCB054828). He is in cycle 1. He take 1 pill weekly (Entinostat) and receives 1 infusion biweekly (Nivolumab=Opdivo). His hair and nails are growing back. His eyelashes don’t appear as long. Hi lips are starting to blister. He has more bone/muscle aches and abdominal pain. I’ll try to keep everyone updated on his progress and this study.