On the move again

Good news is the mouth sores stayed better.  I had a couple in the last few weeks, but one at a time and they didn't take weeks to get better, so that was good.

The bad news is that while Afinitor was working great on creating canker sores, it wasn't working as well on my cancer.  I had an ultrasound last week and found out yesterday that there's more growth in my liver, so moving on.

It really isn't overly surprising, I guess.  So far since my stage IV diagnosis in February of 2014, we've been working through the arsenal of anti-hormonal drugs.  But of the Tamoxifen, Faslodex, Ibrance and Letrozole, Afinitor and Aromasin, only the Faslodex (my 1st stage IV treatment) had any real success.  After my cancer evolved around that, it seems to have been able to outsmart that type of treatment no matter what the form.  But I really had hoped for better.

The cancer in my liver didn't increase by that much, but my oncologist doesn't want to keep throwing time at the Afinitor given my history, so I stopped taking Afinitor and Aromasin yesterday and will begin a chemo drug called Xeloda as soon as my insurance and specialty pharmacies can get it together and send it to me, probably in a couple of weeks (but, obviously, given my history with insurance and specialty pharmacies, I don't recommend holding your breath, unfortunately).

Xeloda is supposed to be an easy chemo (as far as chemo goes, I guess), not like the dose dense adriamycin-cytoxan-taxol I was on at stage III.  It's not an infusion, it's a pill (well, 6 pills a day for 7 days, then 7 off, then on again, actually) and it doesn't typically cause hair loss so I'm not back to the wig just yet.

It can cause nausea, vomiting, other GI issues, and fatigue, but less often than what people think of with chemo.  It can also cause mouth sores, but I guess at least if it does, I'm good at working through those by now, right?

The big side effect, most common and most impactful, is something called Hand Foot Syndrome (not to be confused with Hand Foot Mouth Disease, which isn't a side effect of any chemo drug).  Hand Foot Syndrome is a painful burning, swelling, redness, chafing, blisters and peeling on the palms of the hands and soles of the feet.  Lovely.

But not everyone gets it and even if it does happen, the severity seems to vary a lot and really bad cases aren't common, so that's good.

My nurse practitioner has me taking really good care of the skin to get it in as good shape as possible when I start.  And the 7-on-7-off schedule is supposed to help prevent worse side effects as opposed to the older 14-on-7-off regime.  So I guess we'll see. I know I tolerated chemo pretty well the last time in 2012, so who knows?  I may dodge the worst ones this time around, too.  

And, to be honest, if I have to walk around limpingly for the next decade with flayed palms and soles frightening children with my blistery hands and who knows what other kinds of side effects of various unpleasantness, it will be ok.  If it works for a while against the cancer, I can live with the rest.

Doesn't mean I won't whine about it constantly, because you know I'll do that!  But where there's whining, there's life, right?  (just try and remember that when I'm at my most obnoxious, ok?).

For those of you who find big words as amusing as I do: by now my cancer has beaten an anthracycline antitumor antibiotic, alkylating agent, tubulin-targeting therapy, an estrogen receptor blocker, estrogen receptor downregulator, cyclin-dependent kinase 4/6 inhibitor, 2 different aromatase inhibitors, and a mammalian target of rapamycin inhibitor.  But it has never seen the likes of Xeloda's thymidylate synthase inhibitor action before.  

And for those of you who have the sense of humor of a 12 year old the way I apparently do: Xeloda can be taken as a pill and not an infusion because it is synthesized in the liver into a compound called 5-FU which is the thing that does the thymidvlate synthesis inhibiting.  For my 5th treatment regime since my last clear scan in 2012, maybe sending the cancer a little gift of FU will be an auspicious sign.

We shall see...

A little better, a little motivation

Just a quick post this morning (getting ready for work and all) to say that with the weekend off, the sores are getting better and certainly more tolerable.  Thank goodness.

My diet has expanded beyond eggs and porridge and the pain is now situational rather than constant.  Such a relief!

I started back on the Afinitor Monday night (she said to do that when they were getting better rather than when they were gone).  So far still healing.  Fingers crossed that this continues!

Yesterday I also got back the results of my Ca27-29 tumor markers from my 2-weeks-on-Afinitor appointment and--surprise!--they were a nice steady 120!  That's basically the same as they were a little over a month ago when I stopped the Ibrance, had the 3 1/2 weeks off, and just 2 weeks of Afinitor under my belt.  I had expected them to go up with all of that and steady is always good, so I'm happy.  It may even make the mouth sores all worthwhile.

Hope it's the beginning of some good work from Afinitor!

Happy Wednesday, everyone!

A Rough Start

And for my next trick...

And the Lord said to Moses and Aaron, “Take handfuls of soot from the kiln, and let Moses throw them in the air in the sight of Pharaoh.  It shall become fine dust over all the land of Egypt, and become boils breaking out in sores on man and beast throughout all the land of Egypt.”

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.

Another breakup, another blind date

Screen cap from Music and Muffins' video for Kate Nash's
"Nicest Thing." Now there's a beautiful broken-heart song for you.

On Thursday I had an ultrasound of just my liver to see how the tumors there are doing (turns out I was right when I said it seemed like the liver had moved to the front of the focus line.  With the liver stuff going on, those poor bone mets can't even get the time of day anymore).  

Yesterday my oncologist called to tell me that the ultrasound showed that there's some more measurable growth in at least one of the bigger tumors in my liver.  Fortunately, my blood tests show my liver function is still normal so it's not an immediate danger.  But it is a move in the wrong direction.

So that's the end of Ibrance for me.

As of yesterday, I am no longer taking those Ibrace pills I fought so hard to wring out of my insurances and specialty pharmacies.  I still have roughly $7000 of that stuff left over (which is only about 2 weeks worth, which is pretty crazy, isn't it?) plus a cool Ibrance pill case, but I'm going to have to toss them.  With Ibrance, I'm done.

Instead, in 2 weeks I will begin a different drug called Afinitor.  

As I was writing an email about the whole situation, it became pretty clear that if I just replaced "Ibrance" and "Afinitor" with a couple of guy names, it would sound exactly like I was writing about relationships.

Almost 2 decades after I found my real life love and settled down, I'm about to go on a blind date with Afinitor just 2 weeks after a bad break-up with Ibrance.  Roughly 6 months after being dumped by Faslodex.  And a year and a half after I had to give Tamoxifen the boot. Honestly, I really didn't enjoy dating when I was dating, way too much stress and unpredictability for me.  And still, here I am.

Ibrance seemed promising back in April.  On paper it was a good match: me with ER+ HER2- metastatic breast cancer, Ibrance: dashing around taking the breast cancer world by storm with brand new "breakthrough drug" status and a reputation for being kind. 

At first it was the little things.  A bad cold, some scary white blood cells.  We tried taking a break, dialing down the dose.  Things seemed better but it was getting hard to ignore the bad omens.  More growth in my liver, tumor markers staying about the same but never going further down (seemed ok at the time but in hindsight...).  I kept trying, telling myself maybe things weren't that bad, maybe they'd get better with just a bit more time. But things never got better.  It just had to end.

At least, as they say, there are other fish in the sea, and one of them is named Afinitor.

My oncologist has had patients do very well on Afinitor.  Some women online have, too.  There's lots of reason to be hopeful.  

So, as people do all over the world wherever there are people who date, I'm listening to a few sad songs, lying to myself I never liked Ibrance anyway, replaying things in my head trying to figure out what went wrong,and then, ready or not, I'll picking myself up, brushing off past failures, suspending my disbelief, and starting all over again with something new.

This is me, giving Afinitor half a chance to prove that even after everything that's come before, maybe, just maybe, this next one will be just the one I've been looking for.

What do you say, Afinitor, shall we give this thing a shot?