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| And for my next trick... |
I've been taking Afinitor for 2 weeks now. Math- and calendar-minded readers will notice that that was about a week and a half later than scheduled.
"Why?" you might ask. Like Ibrance, Afinitor has to come from the specialty pharmacy and, as seems to be the way, there were delays getting the insurance to sign off on it. You'd think I'd be used to that by now, but apparently my learning curve is a little slow.
But I did get it, finally, and started it as soon as it arrived.
Side effects:
Afinitor has some unpleasant potential side-effects, so I was hoping to dodge them all but not really expecting that would happen.
It didn't happen.
One of the potential side-effects of Afinitor is headaches (seen in 21% of trial participants). I started out with that one on the second day.
It wasn't the worst headache ever possible, but it hurt. And it was persistent. Very very persistent. This damn headache withstood Advil. It withstood Tylenol. It withstood Advil and Tylenol. For three long days it was there in when I woke up in the morning. It was there when I went to bed at night. And it was there every moment in-between. But finally, on the fourth day, it broke and I've been headache free ever since. Hooray for victories!
Another common side-effect is an itchy red rash (39% of trial participants). On the third or fourth day, my upper arm started to feel like sandpaper. I coated myself in heavy duty lotion to try and ward off anything worse, and that actually seems to have worked! It's still a little rough and there are now some tiny red spots on my lower legs that I noticed yesterday, but so far so good. I'll take it!
Also among the common side-effects is nausea (29% of trial participants). That one came in waves on and off in the first week, but not so very nauseous, just a little. And that one seems to have run it's course, too. Hooray!
In that first week, I also had a little on-and-off fatigue (36% of trial participants) which resolved and some lingering dry-mouth (11% of trial participants), but nothing too terrible.
So after the first week, I was feeling pretty good. "No big deal," I thought to myself, "this isn't so bad!"
Oh, foolish pride.
Because on the tenth day, I discovered the most common side effect (67% of trial participants): mouth sores.
Mouth sores:
Of course, I knew this was a possibility (ok, at 67% some might say likelihood), so I was taking precautions.
I was wrapping the pill in a thin piece of marshmallow before swallowing it (The internet recommended that to avoid contact with the mouth and throat. I don't take something unauthorized or in high doses just because the internet said so, but it's a tiny bit of marshmallow we're talking about here. And I am authorized to eat food, even health-free, smooshy food. So there isn't much harm in trying).
Swallowing gobs of mallow whole became my new party trick.
I also was swishing my mouth out regularly with baking soda/salt water rinse as a precaution to ward off sores. I was even bringing a water bottle full of the stuff to work so I could continue my swish-fest during weekdays.
I don't really want to know what my co-workers may be thinking about my new found habit of bringing my water bottle into the public restroom with me. Especially when we have a lovely kitchen with nice filtered water right there. But my fear of looking stupid paled in comparison to my fear of mouth sores. Turns out that was a good call. The only thing I missed was thinking it would prevent them.
Because on that tenth day, the couple sore spots in my mouth opened up and into painful sores on my tongue and the insides of my lip. And they've only gotten worse since then.
I could really use that mallow swallowing party trick, because I'm going to need something good to counteract this party-killer of having a mouth covered in sores. It's not a very fun trick.
They hurt when I'm eating. They hurt when I'm drinking. They hurt when I talk. They hurt when I'm doing nothing, to the point where they wake me up at night. And, of course, they're on the left side and on the right, so there's no avoiding them.
Here's the list of things that hurt to eat:
- acidic foods
- sugary foods
- minty foods
- hard foods
- hot (temp) foods
- hot (spicy) foods
- firm foods
- salty foods
- gritty foods
- crunchy foods
half the time even water hurts.
Things that didn't work:
I raided my local drugstore. Twice. Here's the list of things that didn't help:
- Biotene mouthwash
- ACT dry mouth lozenges
- Canker Cover
- Baking soda paste
Orajel Mouth Sore gel and the baking soda/salt water swishes each helped for a little bit, but not for very long. And since Orajel can only be used 5 times a day, "not for long" was less helpful than you would think.
I also bought a new toothbrush featuring Thomas the Tank Engine (soft, small, and very rounded) and new toothpaste featuring Disney Princesses (gentle and bubble gum flavored, not mint). Keeping your mouth very clean is supposed to help, but where there are so many painful areas to jab and strong mint hurts, too, it was getting kind of hard to do.
I went ahead and emailed my oncologist on Wednesday. I needed to know how much was too much with these sores. She said to keep swishing and phoned in a prescription for something called "Magic Mouthwash."
Magic Mouthwash is a mix of the active ingredients in Maalox and Benadryl with liquid Lidocaine. It can be taken every 4 hours and makes your entire mouth completely numb (look, another cool party trick!) but only for the first half hour and then sort of numb for another half hour more. It doesn't work for the full 4 hours until you can take it again, but at least that first hour is pretty good. Which is something to try and focus on during the painful remaining 3 hours.
To the oncologist's office:
Yesterday I went in for my 2 weeks on Afinitor follow-up with one of the oncology nurse practitioners. I was feeling kind of defeated. Mostly because in the war against those damn mouth sores, I was being soundly defeated.
We talked about all the possible side effects I wasn't having or had gotten through. And we talked about the mouth sores. I told her how hard it was to eat or talk. I told her how besides the sores I felt really good, but when it hurts to even talk, that's hard to live with. I had read that a lot of people find the side effects get better after the first month and I told her I was willing to put up with anything for a time, but I didn't know how I was going to do this if it was going to keep on like this indefinitely.
She looked at my mouth and tongue, said "ohh, yeah," and went to talk with my oncologist.
Things I hope will work:
My oncologist told me to take a break from Afinitor.
Not for long, just until the sores are more healed and aren't as bad.
She told me to keep using the Magic Mouthwash (which feels a bit silly to call it because, quite frankly, "Magic" is overstating it a bit). She told me to keep swishing with baking soda and salt water.
And when my mouth is better, I'll go back on the same 10 mg dose I had been on.
Where this stands:
So right now, I've only skipped one dose of the Afinitor. The sores on my tongue feel a little better. And the newer sores on the inside of my lip haven't opened up, so that's good. But right now, the biggest sore on the inside of my lip is still painful and throbbing, so we aren't all there yet.
But I get another swish of Magic Mouthwash in half an hour and more Advil, too, which should give me a break.
And at least now there's new hope. Because taking a break from Afinitor is something I hadn't tried yet and it sounds like it should help. Plus my tongue feels a little better. And that big sore is pretty big so it's not surprising that it could take a while (it's about half an inch in diameter. Not a pretty look. But at least it's not on the outside. And the resultant fat-lip is a little Angelina Jolie-ish, so there is that.).
And I'm not dropping down to a lower dose, at least not yet. After tanking on Ibrance because I couldn't keep on the higher doses, that's something I'm wary of, so that's a relief.
I really want to stay on this drug, and stay on it at a good dose. Because, as unpleasant as this is, if Afinitor doesn't help, the next stop is chemo. And it's not like chemo is going to be more fun.
Plus, Afinitor has some unpleasant potential side effects (trust me on this one), but cancer's side effect is death. So that's worse.
And besides, if the internet is right, the sores could get a lot better after the first month. Which is good, because I could use some different party tricks.
