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.

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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.