Quality of Life Issues

Despite using the baking soda mouthwash and "magic" mouthwash recommended by Dr. Coscio, the mouth sores continued to worsen and multiply.  My weight has steadily decreased because I am unable to eat -- even drinking water is painful.  I'm unable to talk due to the pain.  I am using the "magic" mouthwash (a combination of Maalox, Benadryl and viscous xylocaine) before my "meals" which consist of Boost meal replacement drinks and the occasional vanilla yogurt cup.  I was seen by Alicia, Dr. Coscio's APN, who advised me to discontinue the Afinitor for one week.  According to my research, stomatitis (mouth sores) is Afinitor's most common side effect.  She also prescribed Valtrex, an antiviral drug, because after examining my mouth she thought it looked more like a viral infection instead of stomatitis.  Interesting.

Today is Day 5 on Valtrex.  Thankfully I haven't seen any MORE sores (last count was 8,) but the existing ones don't seem to be going away.  I'm in so much pain!  And not just when I eat or drink or talk.  So in addition to rinsing with magic mouthwash before meals and at bedtime, and the baking soda mouthwash in between, I am also taking a pain med.  I try to limit this to twice a day because it makes me a little sleepy.  It does help to take the edge off the pain. 

Honestly, it's been really hard to keep my spirits up this week.  I had to miss the girls' first football game (they're both in marching band,) and I didn't go to church either (where Bethany was playing drums.)  I cancelled my parents' Labor Day weekend visit here because I'm in no shape or mood to have company in the house.  Danny is doing everything around the house (thankfully!) because I feel like you-know-what.  My days revolve around my mouthcare regimen and managing the pain.  I'm feeling so discouraged that the sores aren't going away.  The thought of starting back on Afinitor in 2 days makes my stomach turn.  I don't want to live like this.  In pain and unable to eat is not living.  It's actually a pretty miserable existence.  I don't want to be the mom who sits miserably on the sofa all day.  I do still try to converse with the kids about their day, etc., but I sense that they're uncomfortable with me being so uncomfortable.  And my sweet little David ... he asks me every day "Are you feeling better, Mom?"  "Is the medicine helping, Mom?"  He just wants to hear me say that I'm all better.  It's heartbreaking.

Let's say the sores eventually do go away.  I don't think I want to go back on Afinitor.  The literature says that 67% of patients on it get mouth sores.  Mine are so severe -- large and painful -- how can I possibly go back on the drug that most likely caused this very painful side effect?  Similar to the neuropathy caused by Eribulin, it's a quality of life issue.  However, with Eribulin, the decision to discontinue it was made easier by the fact that it wasn't really working on the cancer anyway.  Afinitor hasn't even been given a chance to work.  I am scheduled to be re-scanned in October.  I was only on it for about a week before the mouth sores began.  Deal with the mouth sores until then ... no way!  And then if the scans are good ... live with mouth sores and inability to eat and talk, what, indefinitely?  I should be hoping for good scan results, but not dreading living like this.  I suppose it's a predicament only a fellow cancer patient can fully appreciate.  To the healthy outsider, it is easy to think that I should just suck it up and tolerate the discomfort if the drug that's causing it affords me a longer life.  But again I say, this is no way to live.

I am praying a lot, and I have lots of family and friends praying for me.  Right now I'm being very specific by asking God to take these mouth sores away.  I ask that you pray for the same!