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?

The upside of insurance issues

Van Gough - Portrait of Dr. Gachet
(who, I'll grant you, was not a medical
doctor, but I think it still works)

I know that over the past week, this blog has turned into insurance gripe central, you one stop shopping place for all things problematic with insurance and specialty pharmacies.

It's been heavy on my mind over the last week and a half.  But now that my new Ibrance pill case is filled up and I'm 2 days into smashing back my CDK 4/6 action with Ibrance, I feel like it's important for me to acknowledge the upside of having these problems.

I live in one of the few countries where Ibrance is currently available and I have insurance to pay for it.

And that's a huge bright side.

At least as of last April, the Ibrance list price was around $11,000.  Per month.  Approximately $523 per pill for the 21 day course. Or $392 per day for the 28 day cycle.  And that's not even including the unused 125mg and 100mg pills I had to stop taking and not restart when my neutrophils tanked.

But I have insurance to cover it.  And even with the 20% copay from my prescription coverage, because I have commercial insurance I have access to Pfizer's copay assistance card which knocks that down to $10 a month for most of the year.

And even at $11,000 per cycle, this regime is not significantly more expensive than the Faslodex I was on.  And it's not more expensive than chemo or radiation therapy.  All of which were also covered by my insurance.

I doubt its more expensive than whatever I'll be on next, which should also be easily covered by my insurance.

Cancer is expensive.  I'm really, really (really!) lucky to have good insurance that pays for most of the scans, pills, injected drugs, doctor's visits, nursing care, lab work, and lymphedema compression garments that I burn through on a regular basis.

Good insurance with a low out-of-pocket yearly max and low deductibles.

And I'm even luckier that this insurance is through my husband's work and not mine, since I'm the one with the cancer.


I read about the Affordable Care Act/Obamacare, Medicare and Medicaid, insurance exchanges, Social Security disability, and all that related mess of things.  I try to understand it, but honestly? I usually get overwhelmed and give up.  And I'm not a stupid person.  It's complicated stuff and I have the great good fortune of not needing to understand it right now.

I wish I had the answers.  I wish I could use this platform to clear everything up and we could all go off dancing in sunshine and roses. I don't have that.

And I think it's important to at least acknowledge that I do know and I do understand that for all the grousing I've been doing lately about insurance an pharmacies, at least I have them to grouse about.  I'm grateful for that.  And I know there are lots of people who only wish they had such problems.

(Also, I promise, I'm going to try and write about something that isn't a downer next time. Things around here are really quite good, honest!)

An ugly win is still a win.

Well, that wasn't easy!

After my last post on Tuesday, the one where I thought I was all set getting my Ibrance, it turned out I was not set at all.

Tuesday after work I called Walgreens Specialty Pharmacy, the specialty pharmacy that I was told would fill it, and was told, "No, sorry, we ran your insurance and it kicked back. We aren't filling it."

That was not good. 

I told them what I'd been told by my insurance company.  The woman on the phone transferred me to another Walgreens insurance specialist, not the same one who had told me it was all set and would be filled.

Definitely not a good development.

I explained the problem and how I had been told it was all set.  She repeated that it wasn't.  I told her what I'd been told.  I was holding back tears at this point, still polite, but very frustrated.  She put me on hold saying she would call my insurance and talk to them but that they'd already transferred the prescription to [Pharmacy C] and weren't going to fill it.  Couldn't fill it if they wanted to because, you know, they already transferred it.

Well, she did put me on hold, that much is true.  After being on hold for over 30 minutes the line  went dead.  I'm pretty sure she put me on hold to shut me up and just left me there on hold so she wouldn't have to work with me. Nice. (And, in case you're wondering, Walgreens Specialty Pharmacy, that is a really, really crappy way to treat someone. Anyone. I have cancer.  I need this drug.  I've been told that the continued growth of my cancer is likely caused by extended time off of this drug. Being treated this way is by your "experts" is, I feel confident in saying, not an example of good customer service.)

Ok.  This was really not good.


I called my medical insurance again.  It was now nearing 8:00 at night so I left a message for the person who had told me it was resolved asking for her help when she got in the next day.  I called the general line to get a live person and talked to one of the customer service people on duty. She confirmed that under my insurance it had to be filled by Walgreens and not [Pharmacy C], but also, after looking over the notes, told me they were still working on it and not to worry, they would resolve this.

Ok then.


The next day, I went to work.  My husband was home for the day which worked out well because he was home when [Pharmacy C] called to arrange delivery.  Should it have been filled by [Pharmacy C]?  Well, that's not what I was told.  My husband, on the other hand, was looking at a wife with growing cancer, a drug that could help if we didn't continue to have these long breaks from it, and a pharmacy who's telling him it's all set and they want to fill the prescription.  I don't think it took him too long to tell them to send it on over.

The pharmacy then told him it had to come to them from the manufacturer and they'd have it here by Friday or Monday.  My husband, who can be pushy when he needs to be, somehow convinced them to send it by courier on Thursday, the day I need to restart it.

He called to tell me the good news.  I called [Pharmacy C] (from work) to ask about the insurance.  They told me they had approval.  I said, "Great!" and left it at that (at this point, I was in no mood to ask if they were sure).


That's better.

Later on, my husband called me again to tell me my medical insurance company called and he spoke to the representative I'd been working with (I have permission on file for people to talk to him so it's not a HIPAA violation).  She was very, very apologetic and explained that as she dug into it, she found out that my Ibrance would actually be covered by my prescription coverage company, the one that now requires it to be filled by [Pharmacy C], and not my medical that requires Walgreens Specialty Pharmacy.  She also messaged me on the secure message interface to apologize there, too. Apparently they're now fixing their customer service information so things don't go this way for anyone again.  

Ok.  I appreciate that.

So, as it turns out, Walgreens reps were technically correct. Or at least correct some of the time. At least correct when they weren't telling me it was all set and they were filling it, which was in between them telling me it wasn't all set and they weren't filling it. And before leaving me on hold for half an hour and hanging up on me.

Yeah, I'm just as happy to be working with the new pharmacy and not to have to deal with them again.  That were pretty much a nightmare.

But, probably the best news of all out of this long and crazy saga?  There is absolutely no more opportunity at all this month for this to go south again and me not to get my drugs because, look what a courier dropped off at my house today:

Pretty, isn't it?




______
I debated whether or not to name Walgreens by name, but I thought maybe at this point it was fair enough.  I'm not doing business with them anymore so I'm not concerned about strangers knowing where my drugs come from. And also, they really ticked me off.  A lot.

You know what else?  Now that I think about it, I have no idea why the new pharmacy was able to fill it less than a week after getting the prescription while Walgreens and [Pharmacy B] took over a week.  Did Walgreens fax over everything they needed?  Did their connection to my prescription insurance company make things faster?  Are they just that good?  No idea, but I'm not complaining!

Insurance fixes and more tumor markers

Yesterday was a good news day.  I hadn't realized the level of anxiety I was feeling until it was gone, but turns out the sense of relief was pretty darn strong.

First, I got written word from my medical insurance company that they will continue to cover the Ibrance and that their customer service contacted the pharmacy who had initially told me my medical wouldn't cover it and my Ibrance is in the pipe to be delivered for the day I need to restart.  That is really good news!

After calling them several times over the last 4 months and getting different stories each time ("No, it's not covered, talk to your drug insurance company."  "Yes, it's on the covered list but has to come from this one pharmacy."  "Who told you it was covered?  There's no list, who told you that? Well, if you say it's covered it can come from any specialty pharmacy because you don't have the drug benefit."), I sent a request for clarification through their written interface so this response was in writing. That's a whole lot better! 

"Who told you that?" is not what I need to hear when I'm calling the exact same number with the exact same company about the exact same insurance plan when I just happen to talk to a different customer service representative on that particular day.  But at least it's all set now and they did go to bat for me to make sure the pharmacy was completely on the same page, too, and verify that when the pharmacy insurance specialist said she'd worked it out, I wasn't going to get more, "Who told you that?" before my Ibrance arrived.

(And, yeah, I get it, I'm sure lots of customer service people hear all kinds of mixed up information and outright lies from people all the time.  It's just really hard when it's really important and you know you're not the one changing the story!)

Want even more good news?  How about this: my tumor marker numbers came back and they're still stable:

Scans trump tumor markers, but they're still meaningful, and pointing to the same stable-ish things the recent scans showed is a good sign.

Normal person levels are below 40, so at over 100 there's still a ways to go, but not getting worse is a good place to be right now.

Got to love some good news days to enjoy in these last weeks of summer!