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.

-----

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!

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!)

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.

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.

Moving on

Edward Hopper - Compartment C Car

I got some results from the bone scan I had last week and the CT and MRI earlier this week.  My brain still looks good, but my liver and bones are starting to show signs that the cancer is evolving its way around the Faslodex.  There are some new spots on my spine and some smallish areas on my previously unaffected liver.  It's not terrible, but it's not that great, either.

I also have more kidney stones.  Because today is my day, it seems.

So, at the recommendation of my oncologist, I'm moving on to a new drug combo and last month's Faslodex was my last Faslodex.

It was expected that this day would come, and I think I still did better than average, but I was hoping I'd get a longer run of it.

But, starting tonight, I'm on to Letrozole, an aromatase inhibitor.  I'll be combining that with Ibrance, the  new drug from Pfizer that was just approved by the FDA 2 months ago.  Timing is everything.

The Ibrance will take a few weeks to get (it has to come through the mail from a speciality pharmacy) and my oncologist wants me to wait until after I get back from the first away vacation I've taken in years later this month--it should be fine, but it seems a little ironic that I had 12 mostly uneventful months on Faslodex and the one week in 3 years that I plan to get on a plane for fun, and this happens.  As I said, timing is everything.

Letrozole's side effects should be similar to Faslodex.  Ibrance brings fatigue and low blood cell counts (red and white), so that may be a little more of a challenge.  Or maybe not.

The good news is, in the clinical trials, the Ibrance/Letrozole combo had a median progression free survival of 20 months, which compares to 10 months with Letrozole alone.  Those were women who had not already failed a different hormone drug like I did on Faslodex, so it may not be as good for me, but obviously median PFS is a guideline not a promise, anyway.

I guess I'm getting better at cancer these days.  I'm sad, but for now I'm feeling like it's ok.  It's time to roll up my sleeves again and move on to this next treatment.  And fortunately I'm not out of treatments yet.

And so I move on.  And hope this next new thing will be the next new thing.  And so it goes.