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.

-----

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.