Hi Sally, I had been recommended a maintenance drug (sorafenib) but ended up actually not taking it. I had developed another issue that took center stage and our focus was on that.

How it was explained to me with the maintenance drug was like this: Having the transplant, I’d already gotten an A in the class. The maintenance drug would give me an A+…extra reassurance that the job is good!
It’s like a belts and suspenders maneuver to keep any cancer cells at bay in case they eluded the treatment somehow. If they’re going to reemerge there is a small window of about 18 months or so. It can vary depending on the mutations we had which could impact the potential for relapse. If we can make it past 22 months without a relapse, statistically, the odds of that happening drop appreciably. So the maintenance drug usually isn’t forever.

I know that @mary612’s husband Dane is on maintenance meds, he just reached his 1 year anniversary. Not sure what he’s taking though. Also, @dwolden’s husband, David is or was taking maintenance meds. It’s not unusual for this to happen.

You’re just past the 100 day mark! Whoo whoo! Time for back flips and cartwheels! Feels pretty good huh? When do you get to go home?