Today I met with my favorite Oncology Nurse Practitioner (I only have one, but she is still my favorite!), my oncologist was scheduled elsewhere (which I knew would be the case before my appointment). This week has been a more emotional one for us. I have been trying to wrap my head around how I managed to get ONJ so early and WHY. I point fingers at myself in 5 different ways. I drink wine, maybe my gums weren’t healthy… agggghhhh. I have some pretty solid teeth, I see my dentist regularly, heck, I have never even had a real cavity. I just don’t know on this one. My oncology office is just as baffled. This just doesn’t happen when you just barely start Zometa.
Unless you are Mandi.
I ended up getting a lecture from my mom, Mike and my doctor about managing my pain (not the first time I have gotten one of these). I am trying to understand how you balance pain management, work, life, driving a car… you know… those things. So usually my method is avoiding taking “real” medication unless I am at home. Apparently this is not effective at actually making me comfortable. -sigh- I think I keep just hoping it will all go away. Hope hope hope. Also, rumor has it, I am grumpy when I am sore, and I am a lot less grumpy when I am not sore. So now maybe you can ask yourself – if you see me and I am cheerful – did Mandi take her medication like she was supposed to, or is she just in a good mood. Muahahahaha.
My NP ended up with a long list of questions to ask my oncologist. It sounded like the plan is to try to move me to Xgeva when my jaw heals. I guess the incidence of ONJ is a lot less on Xgeva, but it is still a biophosphonate, which can still cause ONJ. You also have to explain to your insurance company why you can’t have Zometa which is a bit of a battle. I see my oral surgeon this week so I can discuss it with him. My NP shuddered a bit when I described surgery to remove some of my jawbone… maybe I should be shuddering too. I just want medications that kill cancer, but I wouldn’t mind keeping my teeth. Teeth are nice!
We officially cancelled my Zometa infusion today (they put my IV in this morning since it was still on my chart – I definitely wasn’t going to be the one to officially cancel it and tell them not to place the IV). They took it out after it was cancelled.
I am intrigued to find out where my tumor markers were this month when the labs come back (something we didn’t start measuring until I was officially metastatic). I have had some new pain in my ribs, we dug around in my PET-CT looking for spots there and didn’t see them in that scan (I figured they were “known” spots. Bah). Ribs aren’t a candidate for radiation, your lungs are in the way. Nothing verified. Who knows. At the moment the plan is to still try to give the Femara (Letrozole) more of a chance.
On a happier note, my jaw feels tons better after being on antibiotics. I am not sure if the hole has healed at all or not (it is still definitely there). I see the oral surgeon Wednesday and we will see if there is any progress! 🙂
Until I know more, I will just keep swimming.
I made this with my friend’s drawing. 🙂
