Trying again

So a while back, I think it was last year or the year before (?) my oncologist set me up with Ivosidenib. It really messed up my GI movements - always running to the potty (yes, I’m a toddler mom) and completely anxious about crapping myself. Tried a lot of different “stopper uppers,” if that makes sense, nothing worked. I called my oncologist, we ended it after two months.

Apparently my tumor decided to start growing without my permission - super rude. My oncologist wants to start me on a different version of the medication, Norosidenib. I’m not sure that’s the right name. Anyway, I’m not too excited about it.

The PA (physician’s assistant) tried to pump me up about it. Supposedly easier on my GI system, easier to handle, and not as awful as radiation and chemo. Still not interested. They said my reaction to Ivosidenib was like nothing they’ve ever seen. So how does that make me feel about trying something that might be easier on my GI system?

I’ve done radiation and chemo before, the PA said because I’ve done it before, 5-10 years earlier than they should, my speech and motor skills will start to decline. And with Norosidenib, I should be fine and they’ll work with the pharmacist to make sure I don’t have the same problem. It’ll will also be a forever medication. I don’t know how to feel about another medication plus extra medications to make sure my body can handle it.

I don’t know how to deal with it. I dunno what I need, I’m just terrified and I so want to do radiation again but how worth it is it? I don’t want extra medicine for the rest of my life, but I also don’t want to lose function sooner than necessary. It feels like a lose - lose situation.