And away we go...

James and the Giant Peach cover by
Nancy Ekholm Burkert. I love these
illustrations.

When I was in 3rd grade, my teacher read James and the Giant Peach out loud to our class.  As I recall, it was an exciting beginning and a great adventure for most of the book. But I don't remember how it ended. In my memory, there was something about the peach rotting and things going badly and a desperate crash landing and James' animal friends going away forever and James ending up alone.  In my mind, it was not a happy ending at all.  In my memory, it was a sad and brutal finish to a story that had started out so full of joyous promise.

But today, looking at Wikipedia's entry for the book, trying to remind myself exactly what happened in the ending, the Wikipedia summary describes a story that ends happily, not at all sad and lonely the way I remember it.  Now I don't know what to think.

When I was in 3rd grade, life was a different kind of stressful, unpredictable, out of control, and too often lonely and sad.  It's entirely possible that what was a whimsical funny ending for many 8 year olds just hit all the wrong chords for me at the time.  Maybe what was supposed to be a fun and goofy ending just didn't work that way for me and the life I was living at the time. It's entirely possible.

I never re-read that book, never wanted to. I've read 100's of my old favorite books to my daughter and some to my step-kids, too, and I've delighted in the stories we've shared.  But James was purposely not one of them. I never wanted to revisit James and the Giant Peach and the terribly disappointing ending.  But maybe I should have or still should, at least so I could see if the ending is good or bad.  Maybe with experience I'd finally be able to see why someone I remember fondly as a very kind and caring 3rd grade teacher would think it was a great book to read to her class.  Because in my memory, I still don't understand the choice.

....

Do you want to know something surprising? My Xeloda didn't take 3 weeks to arrive.  It actually took 3 days (well, 3 business days, anyway) to show up on my doorstep.  After all the trouble with previous drugs, how's that for a surprise?

Maybe Xeloda has less paperwork and insurance approvals, or maybe it's just that with the Ibrance and Afinitor approvals, any questions for Xeloda were already answered in the system?  Whatever happened, it was pretty nice to have the pills so fast and without a single phone call to see what the heck was going on.

I got them so fast, in fact, that I actually had to message my oncologist and see if I needed to wait the 2 weeks it was expected to take after stopping the Afinitor and Aromasin or if I should start it sooner since I had the drug.  She told me a week would be plenty, so I took my first 3 pills last night.

I'll be taking 6 pills a day--3 in the morning and 3 in the evening--for the next week, followed by 7 days off.  Why didn't I start it yesterday morning to make a full first day like a normal person would?

Oh, come now, if you've read more than a couple of my posts, you know me and my story enough to already know the answer to that one! The reason is because I had taken my Aromasin in the morning before seeing my oncologist/nurse practitioner in the day so it wouldn't have been a full 7 days off of the prior drugs if I took it in the morning.

So, again, only if you're new here, your next question is probably, "Do you really think those extra few hours make any difference at all?  Really?!?"

Well, no, not really, but still it seemed like the thing to do, and when I'm anxious or afraid I find keeping things as predictable and well controlled as possible is sort of comforting.  There's so much with cancer that I have absolutely no control over whatsoever, I try to take advantage of the things I do.

So there you have it, and as of this morning, I'm 2 doses and 6 pills into my new stint on Xeloda.

It's really too early to tell how the side effects are going, much less whether it's going to do a good job reducing the tumors.  I felt a little nauseous this morning, but better after breakfast.  Also, my hands and feet felt kind of ichy/tingly yesterday evening and I didn't sleep well.  Does any of that mean anything after only just barely starting the pills?  Probably not.  I expect what it really means is that I have Xeloda on my mind and am hyper-aware of (read: madly, obsessively focused on) every little thing that could possibly ever be related to it in any universe, known or unknown.  Hopefully I'll be more relaxed about it in time.

I've read blogs and posts from a number of people who have had really great rides on Xeloda.  I've also read about people who didn't have so much success on it, but for now, because there's not much to be done about it anyway, I'm trying really hard to focus on success stories and the good potential this has for me with relatively few side effects as far as chemos go.

....

As far as entertainment goes, on the other hand, whenever I read fiction books these days or pick out movies to watch, I always cheat and find out the endings before I begin.

You might think it's James and the Giant Peach related madness, a crazy obsession focused on avoiding the same kind of disappointment, but I can't really blame it on that.  In my teen and young adult years, I used to love tearjerkers and loved all kinds of books with deep, sad, bittersweet endings.  For many, many years my favorite book ever was The Unbearable Lightness of Being, I loved the story, I loved the philosophy, I felt deeply for the characters and the tragedy of the situation, and I found the sad ending of inevitable destruction so beautifully perfect given the poetically tragic set-up that brought our characters to that final resolution.

But these days, after cancer, I can't stand to spend my time on sadness like that.

If I do ever re-read James and the Giant Peach and find out for sure if it's a crazy fun ride that leads to a whimsical, joy-filled resolution, or a crazy fun ride that leads to inevitable sadness, loneliness, and loss, I know myself well enough to know that it will be a re-reading that begins last-chapter-first and will not go any further if I don't like how that first look at the last chapter goes.

I know that sounds crazy, I understand it's a little nuts. But, I'm ok with that.

These days, I just can't take spending my time getting to know a story, getting to know and love characters, just to watch them end in sadness and despair.  Even beautifully tragic sadness and despair, I'm just not interested.

Really, in these post-cancer days, I can't even take spending my time getting into a story not knowing the ending and just having to worry that it will all end up in tragic sadness and despair.  Even if the ending turns out to be happy after all, I'm just not willing to put that kind of stress on myself.  If I'm going to put my heart and soul into a story for fun, I need to know it will come out well before I even start or I'm not willing to put my time into it.

Yep, I'm sure that makes me certifiable.  And I don't care.

But I do find it kind of ironic, as I sit here in real life typing this, less than 24 hours after starting yet another new cancer drug.

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!

Scans and Insurance Issues

Abbot and Costello doing Who's on First

I had my CT scan as scheduled on Thursday and the appointment with my oncologist the next day where I got the results.  They were for the most part good.

There was some growth in the spots of cancer in my liver, so that's the wrong direction.  But it wasn't a lot of growth, measured in milometers actually, so that's something.

I guess, this is one of those times when oncology is an art as much as a science.  Generally speaking, cancer growth, and especially growth in a vital organ, means it's time to stop one treatment and move on to the next.  But it's not much growth and (as I'm sure you've noticed) I've been off of the Ibrance a lot more than I was supposed to be in the last 4 months as we worked to keep my white blood cell numbers in a safe range.  Is the Ibrance working ok but less well than we'd hoped or is not taking Ibrance what's been working less well?

We talked about the options and at my oncologist's recommendation, we've decided to stay on Ibrance longer.  My neutrophils are still low but not too low even after a full 21-day cycle, so I, hopefully, can keep taking it without the extra long breaks now.  We won't wait another 3-4 months for another CT scan, but will instead evaluate midway with a liver ultrasound.

So I'm still on the Ibrance and I get to break in my new pill case--might as well take good news where I can get it, right?

My oncologist also mentioned that she's thinking when the Ibrance/Letrozole does punk out, the next step will probably not be an oral chemo called Xeloda, but rather another combo hormone blocker plus a different drug that helps delay resistance, exemestane and everolimus.  I think the reasoning is that because the current set, unlike tamoxifen, hasn't been a complete and total failure, a similar type treatment holds promise for me. She also mentioned that there are some great things in development now, too, that should be on the market in the near-ish future.  I'm glad to have some treatments in the wings that don't include a straight path to chemo. We don't need to cure my cancer, we just need to keep one step ahead, and more less toxic treatments are the key to that.

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So, all good news?  Easy enough? I just get my next shipment of Ibrance and keep on moving, right? Ha!  Of course not!  Turns out that I can get my scans, my oncologist, the FDA, my tumor markers, my neutrophils, and my response to Ibrance and Letrozole all pointing in the same direction and still get a wrench in the works.

This time, it's my insurance companies.  If you're interested in the saga, go ahead and read on.  If not, I certainly don't blame you (I decided I wasn't comfortable listing the names of all my insurance and pharmacy companies here, so it's even more confusing than otherwise).

When I originally went on Ibrance in April, I was told it was covered under my [Company A] pharmacy benefit.  Ibrance needs to come from what's called a Specialty Pharmacy, which is different from your local in-person pharmacies and different from the usual mail order pharmacies (cancer: always a new teaching moment).  Under my drug plan, I was told I could use any pharmacy except [Pharmacy 1] Specialty Pharmacy.  So, I got set up with [Pharmacy 2] Specialty Pharmacy, dutifully applied for Pfizer's copay extender card to bring the $2000 plus copay down to $10 a month and planned ahead for the end of the year when we hit the copay assistance maximum.

So far so good.

Then in June, I was told Ibrance wasn't covered by my pharmacy benefit (at all? anymore?) but was actually in a class of drugs covered by my [Company B] medical benefit.  Good news because with cancer I max out my medical out of pocket maximum very early in the year so as long as I use their "in network" pharmacy my copay is $0.  Better and better. But who is their in network Specialty Pharmacy, you ask?  Of course it would be [Pharmacy 1] Specialty Pharmacy, the single Specialty Pharmacy on the planet I couldn't use under my [Company A] drug benefit.  That figures.

So, no problem.  My oncologist resends my prescription to [Pharmacy 1] Specialty Pharmacy, I no longer need to save for the end of year copay, there's a delay of a few weeks but since I was still waiting for my neutrophils to go up, anyway, it was all good.

Until yesterday.

Because that's when I called [Pharmacy 1] Specialty Pharmacy to make sure my refill would be sent.  The answer?  Not exactly.

Now I'm being told that they're being told Ibrance isn't covered under my [Company B] medical after all, I'm being told it should be under my [Company A] pharmacy benefit.  So does this mean we're back to [Pharmacy 2] specialty pharmacy where I already have the paperwork filled out and can just switch back to and get my drugs?  Of course not!

Turns out [Company A] is now [Company C] and as [Company C] they will only cover the drug under a new third specialty pharmacy.  Problem is, getting it from a new pharmacy means new delays and, after the scan results, waiting a few extra weeks to get registered with another specialty pharmacy makes me very uncomfortable.

Anyone still with me here?

Anyway, I think after a couple of hours on the phone with multiple different people at multiple companies, my Ibrance may possibly maybe be all set to arrive from [Pharmacy 1] on time (God bless the insurance specialist at [Pharmacy 1] if this really dose come to pass, I think there must be a very special place in heaven for people who have to deal with people like me).

I'd feel a whole lot better, though, if I hadn't been told so many different things by so many different people at several different companies over the last 16 weeks, but we'll see.

As a kid, I loved the old Batman shows (and lived for the ones with Batgirl in them, because as a young girl in the 70's I was pretty hungry for a little Girl Power!)--they always ended the cliffhangers with "Stay tuned!  Same Bat-time same Bat-channel!"  In real life, cliff hangers aren't always as much fun, but I'm going to have to leave you with one, anyway.  Hopefully, my [Pharmacy 1] specialist is right and I'll have a fresh new bottle of Ibrance 75's in hand by Thursday--stay tuned!

In the mail

A few months ago I signed up for Pfizer's mailing list.  Yesterday I got this in the mail--it's a cute little pill case with dry erase specially designed for the Ibrance 21 day on/7 day off pill cycle.  

I've been using a similar pill box designed to hold morning/lunch/dinner/night pills, but this one is a better size and, hey, it has "integrated" dry erase (I do love a good gadget!).  Pretty cool.

Now I just need to get some good scans this week so I can keep on with the Ibrance and give this thing some use....

Lighthouses, numbers, and upcoming scans

See all those inlets around Brunswick?
Wish I'd know what they meant to
the ocean *before* I got there!

It's been a while since I've posted anything.  Sorry for those who have been worrying.  Somehow as an adult, summer seems to have completely lost that "long days to do anything" quality it had when I was a kid.  It just seems like there's so much that needs doing in every direction!  Part of it's cancer (appointments every couple of weeks to check my blood counts as the regular protocol on Ibrance, or every single week to see if they're back up into "low but safer" range yet, walking every day) but a large part of it is just life with a job and a home and a family and a lot going on.  Just like everybody else!

It's not that I don't have time to post a quick update, of course, and I'm sorry I haven't.  Mentally, things feel very overwhelming these days.  Again, cancer and life.

I'm back on the Ibrance now, so that's good news.  Finally, on July 23rd my neutrophils went up to a whopping 1080.  You'll notice 1080 is higher than 1000 which meant I was cleared to start on the 75mg of Ibrance.

I went back to the hospital at the end of last week to see if my neutrophils were still ok after almost 2 weeks of the new, lower dose of Ibrance.  I honestly wasn't expecting good news because, come on, 80 points above the cut line isn't a lot of wiggle room!  But, much to my surprise, my neutrophils had actually gone up to a crazy 1400--still really low for normal people, but awesome in context! I guess there must be some lag time between cause and effect with the neutrophils, but I'm hoping it means we may have finally gotten to the sweet-spot between the two.

Actually, I really, really hope so because this current 75mg dose is the lowest one there is, so if I flunk out of this one, I'll have flunked out of the entire Ibrance regime.  I don't really want to burn through another one too fast!

Which, of course, brings up the only question that really matters here: it's all well and good that my neutrophils are doing better, but how's the cancer?

And for that, I have no idea.  My tumor markers were up a little bit in late July, but not as high as they were in June, so who knows if it's a trend or just normal variation?  I've been taking Ibrance since the end of April now, so almost 4 months, but I've successfully completed exactly one 28-day cycle, and I don't know what all that extra time off might mean. Luckily, I'm in the last week of pills for this current cycle, so that'll be two full cycles--go me!  I'd actually forgotten about the exhaustion and irritated throat/stomach/nose that come with many days in a row of this stuff, but after all the on and off with this drug, how can I complain?

At least this week I'll finally have some more answers--that CT scan we'd scheduled at my last appointment is finally coming right up, and that should tell us a lot more.

------

Almost a month ago already, my husband, daughter, and I took a nice weekend in Freeport, Maine.  I take a lot of my PTO for medical stuff, so a little Saturday-Sunday vacation away was just the ticket.

Maine was lovely, the weather was lovely, and strolling around Freeport made for a very relaxing time.

On Sunday morning, after we'd had Lobster Brunch (nice!) at the inn and checked out, we thought we'd go enjoy a little time on one of those beautiful beaches I thought Maine was known for.  Although many of my friends growing up went to Maine all the time and I'd heard about the beautiful beaches (Old Orchard! Oguncuit! Scarborough!), this Massachusetts girl has only been to Maine once, and that was for a wedding not swimming.  But I figured it's the same ocean we've been to here a 1000 times, what could go wrong?

Well, turns out, a lot could go wrong!  We went to a private campground/park nearby on the ocean, paid our per-person entrance fee, parked the car, grabbed our beach bag and walked to the water edge only to find our "beautiful Maine seacoast" was actually a mass of clay sludge and shallow, dirty water with sharp shells and seaweed everywhere.  We actually walked all the way around the point looking for the ocean we knew and loved (we are such rubes!).  We never found it.

I know, I know, should have done some research first!  I guess it never occurred to me that the Atlantic Ocean could be so different a few 100 miles up the coast. 

Part of life is knowing when to say when, and this one was an easy call.  We stopped just long enough to unsuccessfully try and wash off the sticky clay from our feet at the spigot before hopping back into the car and hightailing it back to the highway and heading home.

It was disappointment, for sure.

But a funny thing happened on the way to Massachusetts.  We'd been talking about how disappointing it was and my husband, who was driving, was secretly thinking about maybe trying one of the other beaches to maybe redeem the day a bit.  It might not be great, either, but it could hardly be worse.  As we were plugging down I-95 along with hundreds of other people at the end of a summer weekend, we came around a curve to a pile of breaklights just at the exit marked "York Beach".  Wait there with the rest of the traffic or take the exit?  That's an easy call!

So we went to York Beach and it was stunningly beautiful.  Miles and miles of clear sand and blue water rolling up wave after wave after wave.  There was even a lighthouse in the distance where the land and water met.  We had a wonderful time.

And a funny thing about that lighthouse, too.  I've had radiation therapy 2 courses now, both times in the same planning room and the same treatment room.  They have pretty pictures on the wall and over the ceiling light panel.  Gives the patient something to look at while you're lying there day after day.  I bet you can guess what those pictures were of, can't you?  Yeah, it was that lighthouse, the one that was sitting there waiting for us at York Beach.

I'd know it anywhere.

I took this pic because I was there!

I'd had 50+ different occasions to study that house, that light, the little fenced yard, the little red shed.  It felt comforting to see it again.

Is it just a coincidence that we accidentally discovered the same lighthouse that figured prominently in my cancer treatments? Maybe. You could certainly make that argument.  But I don't know, I like to think of it more like Noah's olive branch, like a little symbol of encouragement during a difficult time.

Maybe it is just one of those things that happens.  But to me, finding it there like that seems like a good sign.  Not sure what kinds of ups and downs are in store or what "good" ultimately means here, but cancer is a rollercoaster and Ibrance is, too, and I think I'll just take whatever good I can get my hands on--to me, this is just the one I needed, and right when I needed it, too.

A small piece of good news

To go with all the uncertanty about Ibrance and my neutrophils, I did get a small piece of good news Tuesday (sorry I didn't get it online faster!)--I got back my tumor marker number from Friday's blood draw and (drumroll...) it's a little lower than it was a month ago!

It's been going up steadily at least since April, but the July number is back to where it was in May:

These things tend to fluctuate, so the scans in August and more tumor markers to (hopefully!) show a downward trend (and not just point) will be more meaningful.  But any trend has to start somewhere, right?

It may be a trend or it may be a blip, but at least it's a relief and I'm going to enjoy it!

Next up?  More blood tests to see if those neutrophils can be peer pressured into going the right way, too (come on, neutrophils, all the cool kids are trending the right way, what's the matter? won't your mommy let you....).

And again with the neutrophils

Another image of a neutrophil, this one from
http://www.tentrillioncellhuman.com/tag/blood/

I wrote this on Friday but was away with out internet and never got it posted, so "today" and "now" kinds of are Friday--days go by so quickly sometimes! 

I'm back in oncology for my monthly visit and again my Neutrophils are too low to continue.  Sigh.

So I'm off the 100mg, more bloodwork in a week, and hopefully starting again after that on the 75mg dose.

It's so frustrating!

I'm getting the feeling from my oncologist that I'm getting into the area where there are questions about whether the lower dose and the ratio of time off vs. time on are pushing out some of the potential benefits Ibrance would otherwise provide.

I have a CT scan scheduled for next month.  No bone scan unless the CT results show the additional info would be useful.  I'm not sure what that means, but I'm guessing it's a sign that the liver mets are the focus right now rather than the bone ones, but I could be wrong.  The CT (and possible bone scan) will be the key to deciding whether or not we keep on with the Ibrance or give up its neutrophil slaying mean little ghost and move on to different drugs.

Of course, if the scans are good despite all the time off and lowered doses, that would be great.  But at this point it's an "if" and not a "when".  

Ok, it was never a "when" and always and "if" but the "if" just seems a bit bigger right now.

But the first rule of business is to grow back these poor beleaguered neutrophils.

I've written before about trying to "read" my healthcare providers.  Trying to catch not just what they say but what it "means"--and the fact that I'm only right about 50% of the time doesn't even deter me from continuing to do it over and over again.  It's a compulsion, I guess.  My "reading" today makes me think my oncologist would be surprised if the scans were great.  Happy, sure, but still surprised.  

I agree with her recommendation to give the Ibrance another round (or however much of a round of Ibrance is under my belt after I get on those 75mgs by the time my scan appointment comes around) and then take a look then at what's going on.  I'm just saying I don't think it will be a great surprise if any major benefit Ibrance might have given me may have been tanked by my neutrophils inability to tolerate Ibrance.

And if that's the case, we move on to the next thing and hope it's the great big wonderful success we're looking for.  A.k.a. be pretty much as we'd hoped Ibrance would be.

Still, I feel great, so there is that.  I don't have an discernible symptoms from those missing neutrophils.  A few small side effects, some fleeting aches that may be cancer in the bones or may be the bones healing from the cancer (see, I can't even read me, much less other people, sheesh! no idea why I still keep trying to do that), but nothing I would pay much attention to if it hadn't been for the Ibrance/blood tests/cancer making me look).  

And, for all we know, Ibrance could be doing the trick and we just need to get those scans to know it.

So I wait to grow neutrophils, I wait for tumor markers, I wait for the scans, and I keep trying to distract myself with a beautiful summer.  And so it goes.

1250

Source: https://commons.m.wikimedia.org/wiki/
File: Team_Singapore_fireworks_display_
from_Singapore_Fireworks_Festival_2006.jpg

It's a typical Monday evening for me, rushed between getting home from work, walking, dinner, family, and life, but I wanted to pop in for a second and let you all know that I got a call from the hospital today that my latest blood test showed my neutrophils are up to 1250 (this after being down to the 600's the week before).

This means as of this evening I am back on Ibrance!

After 17 days off, I'm back in the game.

Fingers crossed that these lower 100mg capsules are a little easier on my blood cells.  And fingers double-triple crossed that the hits my blood cells have been taking are mirrored by some serious big hits on my cancer cells.  Because that would be awesome.

Neutrophils and an Ibrance Break

The protocol with Ibrance is to go in and have your blood counts tested twice a cycle for the first few cycles to make sure your blood cells (white, red, platelets) remain at safe levels.  This is because the CDK4/6 inhibiting action of Ibrance that's supposed to help slow the cancer's evolution can also slow down blood cell production.

So, per protocol, yesterday I had my blood counts checked and I saw my oncologist.

I didn't get horrible news, but it wasn't really good news, either.

It turns out my neutrophils really don't appreciate having their CDK4/6 inhibited.  They've dropped down to an Absolute Neutrophil Count (ANC) of 810. 

Normal ANC is, according to my lab reports, generally between 1400 and 6600 ANC.  Throughout 2014, my ANC remained in the 3000 range, so 810 is not normal in general or for me in particular.  And for Ibrance, anything lower than 1000 is considered too low to continue as planned.

Neutrophils are a kind of white blood cell that, according to Wikipedia, "form an essential part of the innate immune system." So they're not really something to get too careless about.


My oncologist showed me the protocol Pfizer has issued for Ibrance.  Per their guidelines for ANC between 1000 and 500, I am off of Ibrance for at least a week, possibly longer, until I can grow back enough neutrophils to be back up at a safer level.

Plus, when they do go back up, I'm not going to be allowed back on the 125mg dose of Ibrance I was taking.  I'll start back on 100mg and see how that goes. 

I asked my oncologist the obvious question: will this reduce effectiveness? She says that in the clinical trial about 25% of patients needed to lower the dose for one reason or another but it didn't seem to correlate to a direct drop in progression free survival (or something like that, I was honestly still a little distracted by neutrophil numbers).  I know it wasn't exactly, "of course not!" but it also wasn't "of course it does!" So at least that's something.

I also just yesterday read about a woman on Ibrance who had to take a full month off with low counts and, after that, was taking the 100mg dose and still had a nice stable scan.  I know, I hear you, the plural of "anecdote" isn't "data", but still, it's not a bad sign.

Does it make me a little nervous to be off of Ibrance before I even finish my second cycle?  Yes, it does.  Does it make me a little nervous to be on a reduced dose of Ibrance when I get back on it?  Yes, that, too. 

But, on the other hand, I am still fighting the after-effects of my second cold in 6 weeks, so having more neutrophils does have some appeal.  And if taking a lower dose can get rid of the sore nose-throat-windpipe side effects I've been be having, that would be a good thing.  And maybe the headrushes when I stand up and the general fatigue that's been hitting me in the afternoons, I wouldn't mind getting rid of those, too.


But, none of these other side effects seem like deal breakers for me if the drug is working.  In fact, if I wasn't taking Ibrance and being aware of things like that, I'm not sure I'd really give them much more thought beyond a, "hmm, that's odd," sort of response. Probably followed by the same strong coffee to get through the day and early bedtime for the fatigue.  Same as I've been resorting to lately.  But, it's probably not something I'd have been super concerned about without Ibrance.

Of course, bacterial and fungal infections, inability to fight off the naturally occurring bacteria in your mouth and digestive tract, septic shock, and things like that are serious deal breakers.  And that's what is increasingly likely if my neutrophils continue to drop and head down past the 500 ANC range.*  Which is, of course, why Ibrance is off the table until I can grow back some neutrophils.

Because it doesn't really make much sense to take Ibrance to try and hold off death from cancer just to turn around and die from septic shock.   That's pretty obvious.

So I'm not an Ibrance drop out (hooray, me!) but I am, more or less, in Ibrance detention hall.  And no idea for how long.  But with any luck, when I go back to retest next week, I'll have some better numbers and be ready to get back into the Ibrance club.

In the meantime, if you need me, I'll be the one sitting over there in the corner studiously working on growing  neutrophils.

___
* I don't really know what the protocol is if my nuetrophils were to get below 500, but my guess is there'd be some Neulasta injections or other interventions.  The first step is to do what we're doing: stop killing those neutrophils.  But if it got worse anyway, my guess is they'd take steps. I do know they're watching me and aren't going to just sit back and watch sepsis set in, so don't be concerned about that.

A little bit of housekeeping

Two quick things: a correction and an option.

The correction: On my last post, I mentioned that the results of the PALOMA-3 with news on whether Ibrance is helpful in Overall Survival (how long people live) in addition to Progression Free Survival (how long till the cancer evolves around it and grows again) are expected to be presented at ASCO this weekend.

This is not actually true! 

It's sort of half true, but that doesn't count for much.  The actual truth is that the results of PALOMA-3 will be (or have been) presented at ASCO this weekend, but those are aren't Overall Survival (OS) for Ibrance and letrozole.  They're actually Progression Free Survival (PFS) of Ibrance and Faslodex--the results are very good, and Ibrance more than doubled PFS over Faslodex alone, from a median of  3.8 months to 9.2 months, which is, as I understand it, an almost unheard level of improvement in cancer drug development.  It's similar to the improvement found with Ibrance and letrozole over letrozole alone and all points to Ibrance being a really big deal in the treatment of hormone receptor positive metastatic breast cancer.  A huge big deal.

For me, personally, it's probably not that useful since I've already flunked out of Faslodex, but it will be big for a lot of women in the future, so that's really good news.

The study results I was thinking of about Overall Survival with Ibrance and Letrozole are actually Phase III of the PALOMA-2 trial (not phase II of the PALOMA-3 trial, but maybe you can see where I went wrong there!) are due out in October.  And I'm still anxiously awaiting those, though even more anxiously awaiting getting to the my next scans and seeing how Ibrance and Letrozole are working for me!

And the option:  I've just made a Facebook page for this blog for people who like to use Facebook to follow blogs.  If that's you, here you go!  You can go directly to www.facebook.com/mepluscancer or click the Facebook icon to the top left, and (either way) "like" the page.

If that's not you, or you just don't want to follow this one there, no worries.  And I promise this is the last I'll mention it.  And there will be no "give-aways and please, please, please like it" posts.  Because I don't like those.  And also, this is a blog about metastatic cancer so what exactly would I give away, anyhow? (Can you see it now?  300th person to like it gets an empty bottle of letrozole, 400th gets an Ativan info sheet and an empty bottle of Ibrance--whoot!)

The most wonderful time of the year

Today is the first day of the 2015 Annual Meeting of the American Society of Clinical Oncology.

It's a time when all kinds of cancer researchers, cancer drug companies, and cancer healthcare professionals present papers and reports on their research and clinical trials, and already some releases are hitting the mainstream news.

There are other meetings throughout the year that have similar presentations--the results of the PALOMA-2 trial were released at last year's American Association of Cancer Research meeting, which resulted in early FDA approval of palbociclib/Ibrance, which resulted in me being able to take it now--but advance press on this one has been really promising.

And results on PALOMA-3 with news on whether Ibrance is helpful in Overall Survival (how long people live) in addition to Progression Free Survival (how long till the cancer evolves around it and grows again) are expected to be presented.  Obviously I'm very interested in news about that one!

A lot of the research they will announce is still years away from being usable as cancer therapy, but it's progress and a sign that there are new things coming.  And, hopefully, there will be something good coming to take the place once my cancer evolves around Ibrance.  Maybe even something more permanant.

My brother sent me a link to one article based on brand new research with the subject: "Hold the line!  Help is on the way!"

I love that!  That's the plan, that's the goal, hold the line long enough for the next army to arrive.  

And this weekend, we should get a first look at some of the armies making their way to my battlefield.  And God willing, there will be at least a few butt-kicking regiments all geared up and getting ready jump on in and save the day.

Numbers that may or may not mean something

M.C. Escher - No. 45 Angels and Devils

Have you ever watched those videos where an artist starts drawing something and at first you have no idea what it's supposed to be but at the end, with those final last strokes--presto!--suddenly it all comes together and turns into something?  They used to do a lot of those on Sesame Street with the voice-over kids guessing all the while at what it would finally turn out to be.

Health care is like that, too.   

Sometimes there's a lump or bump, maybe a random, fleeting pain.  You don't think that much of it at the time, but when it gets worse or other things happen, you get a diagnosis and in hindsight you can see how it all fit together.  Pieces of the whole.

I'm thinking of that because my tumor markers have gone up.

Long time readers and those of you also involved with cancer will know that tumor markers are something some cancer tumors give off into the blood.  They aren't present for everyone with breast cancer and they aren't 100% reliable even if they are present, but I have them and they seem to be pretty reliable, as verified by the CT and bone scans (more about tumor markers here).  And, basically, the more active the cancer, and the more cancer there is, the higher the tumor markers are.

And mine have gone up a lot since we last tested them in early April.

I'll admit, when I first saw the high number, higher than I've ever seen it before, I panicked.  Damn you, Ibrance, you stupid punk, not even worth a month? Really?!?

But then I started thinking.  And the real truth is that I have no idea what it means.

It's true, in general, high tumor markers are bad, but a few things I was thinking of:

1. Anti-hormonals like Faslodex and Letrozole (with or without Ibrance) can take a while to make a difference.  That's why if it's a crisis, they go for radiation or chemo, not anti-hormonals.  The problem for me is that I don't know what "a while" means here and I don't really know what's supposed to happen in the meantime.
2. I've read that sometimes anti-hormonals can cause tumor "flares" when you start taking them, where the cancer activity ramps up sharply as the tumor starves for estrogen, but after the flare, the anti-hormonals start to make a difference.  But it isn't true in all cases and I don't know if it's true at all when you switch from one type of anti-hormonal (like Faslodex, an estrogen receptor downregulator) to another kind (like Letrozole, an aromatase inhibitor).  So these numbers could be a sign of a flare indicating effectiveness.  Or they could be a sign that the cancer is just plain growing, indicating ineffectiveness.   Who can say?
3. I know what my tumor markers were in early-April and I know where they were 6 weeks later, but the thing is I have no idea what they were doing in the meantime.  For all we know, they could have gone up a lot higher between the two points.  For all we know, this newest high number could actually be a lovely, Ibrance and Letrozole led drop from whatever even higher point they were at in between. Really I have absolutely no idea.

There's a reason I don't practice medicine.  Clearly, I have no idea whatsoever what I'm doing.  And maybe some people really do have that Earth-Mother-Goddess ability to "know their bodies" and listen to some sort of soft, sweet voice of confident intuition telling them what's going on, allowing them the supernatural ability to "know their bodies best."  I think that would be really cool, but I wouldn't know for sure because I've never, ever had such a thing happen to me.  Ever.

But I did come up with one good thought of my very own (or maybe that's my soft, sweet voice of confident intuition finally weighing in, but probably not).  I don't practice medicine, but I know someone who does.

So I went back onto the new Electronic Medical Record site where I saw the high tumor marker number and sent a message to my oncologist asking her what, if anything, we were supposed to make of this number.

And she told me, basically, that it's just too soon to tell.  It's too soon to know if the drugs are working, too soon to know which piece of which picture this one is going to turn out to be.  She's not worried right now and it's no reason to switch drugs right now.  Because, right now, it's just too soon to know.

So this picture could end up being "Dawn of Utopia" or it could end up being "End of an Empire," but right now, no one but God himself can tell where this one's going.

The good news is it isn't bad news. The bad news is it isn't good news.  And beyond that we just need  to wait and see what kind of news it will turn out to be.

Ibrance cycle 1 is in the books

One of Theo van Hoytema's
astonishingly beautiful calendar pages

This evening I took my 21st Ibrance pill, the last in my first bottle.  That makes it the last Ibrance pill of this first 28 day cycle, which will be complete after the next 7 days of only Letrozole.  Then I pop open bottle number 2 and start the whole thing over again.

Other women on Ibrance report that the week off is usually a good week with better energy, a lessening of side effects, and a general return to feeling better.

As I mentioned before, I think I'm tolerating this pretty well all in all--but I'm still really excited at the idea of hopefully not dealing as much with some of the things I'm having during these next 7 days.

The side effect I'm most hoping to get rid of?  Believe it or not, my hands and feet are super itchy!  It's a weird one, for sure, and I'm not entirely sure it isn't at least partly due to Letrozole and Lupron making sure there's no estrogen circulating in my body to provide any of those youthful benefits like healthy skin, but the itching started with the Ibrance and some other women have reported similar issues, so I have hope that I may be able to get a few days of improvement out of it.

The side effect I'm most curious to see if I can get rid of? I struggle with lymphedema in my right hand and arm and I've had a bad flare up for the past 2.5 weeks or so.  Lymphedema is swelling caused by removing the lymphnodes under my arm as part with my mastectomy--7 of the nine were filled with cancer and some had the cancer growing out and around them, so I'm glad they're gone although it does mean that I have to wear a compression sleeve and glove whenever I'm awake.  The flare up is not something reported as an Ibrance side effect and I wonder if it isn't more of a symptom of the stress my body's been under with traveling, a nasty cold, and warmer weather.  But the timing with Ibrance is suspicious so maybe this will help.

I'm glad I have Ibrance, and taking it for the past 21 days hasn't really been that bad, but that doesn't mean I'm not glad to have a few days without it!

Ibrance (second impressions)

My cold seems to have finally gotten better. I suspect this is in part because my good husband went out and got me some good cold medicine which allowed me to finally get a good night's sleep.  And in part because eventually whatever I have for white blood cells seem to have finally gotten the upper hand in the 2-forward-1-back war I was waging against the head cold.  I'm almost afraid to speak too soon, but I think things are solidly in the right side of wellness, head-cold-wise.  Cancer wellness, not so much, but sometimes you have to just take what you can get.

With 16 days of serious nasty cold symptoms and time off of work--by far the longest cold I can ever remember having, but I am pleased to be able to say the exhaustion is finally much better.  I actually feel like myself again.

Which is the part that makes me nearly giddy: I've been taking Ibrance every day for 17 days and I feel like myself again.

The words don't really convey the magnitude properly.  The thing is, the way the timing worked out, the day after I took my first Ibrance pill I started feeling ill. And the more days I took Ibrance, the worse I felt.  So I was legitimately wondering there how much might be outside stuff and how much was just the way it was going to be on Ibrance.  I was thinking the future seemed most likely to be a collection of days of feeling meh at best, wondering if I really appreciated the better life before this treatment quite enough.

But now I feel much more normal, so that's really exciting.

Since I'm just past the halfway point in the 21 day on/7 day off Ibrance cycle (at least assuming my blood counts are decent enough to start the next cycle after those 7 days off), I just went in yesterday to have my blood drawn and see exactly how those blood cells are reacting to having their CDK 4/6 inhibited.  The counts are expected to be down, but the question is how much and whether we're getting into dangerous territory or not.

I've gotten back numbers for the metabolic profile (sodium, glucose, etc.) and those have taken a dive from where they were holding before Ibrance, but so far I seem to be in the low end of normal--in some cases just barely, but it still counts.  

I need to wait on lab results for those blood count numbers (white cells, platelets, etc), though.  I do have some issues/side effects, some of which do seem to be related to Ibrance messing with the blood cells.  Among other things, I suspect white blood cells (low to begin with) may be having problems with Ibrance, that 15 day head cold being exhibit A.  I also am wondering about low platelets, judging from my new found mostly chronic low level nosebleed (cute, right? are you jealous?).  But at least I'm feeling pretty good again, so it's hard for me to believe the counts could be that dangerously low if I feel this normal.

And, anecdotally at least, it seems like a lot of the Ibrance blood problems start to taper off after a few cycles on the drug, so things have the potential to get even more normal as time goes on.

The biggest question (Is my cancer continuing to grow?) is still going to be an open one for a few months while we let Ibrance and Letrozole (hopefully!) do their stuff.  But unlike last week, suddenly now the idea of continuing to generally live my life while taking Ibrance is beginning to feel really do-able again.  Which is good, because I'm hoping Ibrance with Letrozole will work for me, and continue working, and continue to be worth taking for a very long time.

Maybe about Ibrance, maybe not

Edgar Degas - L'Absinthe

Two weeks ago, I was on a dream vacation to Italy.  One week ago I came home and started my 2nd new drug, Ibrance, meant to work alongside the letrozole I started the day the new bone and liver mets were discovered.  I've been feeling sick ever since.

I can't really blame it in the Ibrance, at least not fully.  I was, after all, on airplanes, in new places, finishing a busy week with not much sleep.  My meals in Italy were delicious but not full of whole grains, fruits, and vegetables the way I try to make sure my normal meals are.  So, like millions of travelers, I caught a bad cold.

Strangely, with all the medical stuff I've had over the past several years, stuff including chronically low white blood cells, I don't get sick much. That's part of why this one has me shooting dirty looks in Ibrance's direction.

I also can't remember in recent times having a cold that lingered this long.  First a couple of days of sore throat and body aches, then add in a bad, tickley, barking cough, toss in a stuffy/runny nose for good measure, and make sure there's enough exhaustion so that the nights spent sleeping poorly with constant coughing and sniffling really hurt.  And keep up with it through what is now day 8.  Yuck.

To be fair to Ibrance, none of those are recognized side effects of Ibrance.  Plus, as of last Wednesday at least (at the time sore throat and body aches), my oncologist wasn't worried.  She pointed out that 3 days on Ibrance (at the time) wasn't really that long to be building up side effects.  So that's all good.

But, since you know me by now, you know I still worry.

I worry about the common side effects of Ibrance like lowered white blood cells and chronic upper respiratory infections.  Low platelets an poor blood clotting.  Anemia and fatigue. I worry that all of that sounds like an invitation to catch everything that may be going around.

I worry that those things, even if they're just starting to develop in me aren't helping me get over this cold.

I worry that this isn't just a bad cold based on bad luck but actually a sign of how my live is going to be on Ibrance.  Catching everything.  Taking too long to get better.

My oncologist is smart and careful, and in my head I know she's probably right, that this is just a cold and that's that.

And hey, last night, I only woke up once in the night, which is much better than the several nights before.  And yesterday, finally, for the first time in a while, I felt better than the day before instead of worse--both facts that help bolster my faith  in a non-Ibrance illness.  Or at least an illness that can run its course despite Ibrance.

But, with a cold that's unpleasant and lingering, it has me thinking back to my chemo in 2012.  That time was tough but bearable, mainly because I knew that in 16 weeks from the first dose I would be done.  That's the thing missing with stage 4 treatments, there isn't a checkered finish flag.  You start with one (hopefully the one with least potential side effects and most likelihood of good results) and keep on until the cancer gets worse.  Then  you pick another and do the same thing.  Over and over again until you run out of treatments.

Its a great system if your side effects are minimal and your success is long lasting.  It's an ok system as long as they meds are giving you good results.  But if the side effects are difficult and the drug is still effective, at some point you may have to deal with the fact that this is now just how your life is. And if the drugs aren't effective, well, you know that's not good.

Clearly, a lingering bad cold (or a series of lingering bad colds) is livable if the anti-cancer results are good.  And I have hope that Ibrance will generally go better than this first week has been, despite low blood counts that may or may not be in play and may or may not be keeping me sick longer.  At least for now, I feel like maybe I'm starting to get over my cold and coughing a little less.  Hopefully that's a good sign that it won't be like this for the duration.

I've always said, and always meant, that I'd do whatever I had to to be here for my husband and the kids for as long as I can.  But this cold serves as a reminder that so far in stage 4 I haven't had a whole lot of things that would put that to the test. I'm hoping my Ibrance experience won't be much of a challenge, either.  But this week of illness is a reminder to me that there are a lot of different things living with stage 4 can mean.

But right now, there are just too many unknowns about what this cold might mean, how Ibrance might go, how long I'm going to be feeling under the weather, and even how effective Ibrance may be for me.

So, here's hope for feeling better soon, a long and successful run on Ibrance, and no more illness.  And the hope that I'm just a traveler who caught a bad cold unaided and unabetted by any other factors and just need to get over it soon.