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!

This could be the making of me

William Blake - Ancient of Days

One of the things about cancer is that there really are no (or at least very few) absolutes in treatment.  They have things that "usually" work or "often" help, but there's no real guarantee that it will work for me.

This is one of the hardest things for me to deal with.  I don't like to take chances and I'm very, very fond of sure things.

People who work with cancer do, of course, absolutely know what works a lot of the time.  They know if something has been proven to work better than other things, plus they understand the reasons certain things should be effective (for instance, my cancer, both in the original tumor and now in the bone, has been tested and found to have estrogen receptors, so depriving it of estrogen is considered a good approach because it both fits the science and has worked in controlled trials for others with similar cancer characteristics).

But, with cancer (like, unfortunately, with so many things) there is still a chance it won't work. Kind of like how I had the "most likely to cure this" treatments last time and yet....

Basically, there are still a lot of unknowns.

In the next week, I'll have been off the tamoxifen (no longer my best friend) long enough to "officially" have it out of my system and be ready to start the next treatment plan (the Xgeva I started a few weeks ago is intended to help prevent further bone damage from the cancer, but it's not supposed to kill the beast).  The plan is to move on to a different kind of anti-hormonal drug (probably an estrogen downregulator, possibly with or instead an aromatase inhibitor, both of which are different than an estrogen blocker like tamoxifen was, for those keeping track or playing cancer treatment bingo).  If that works, then great!  And hopefully it will work and work for a long time.  But, if not, I will probably be on to chemo fairly soon (then, hopefully that will work and work for a long time).

But, of course, we won't know what will happen to the cancer until it actually happens.

For now, with this next treatment plan, the question is which particular estrogen treatment (there are seveal out there for post-menopausal/post-chemopausal women to choose from) and what else goes with it.  And, for now, the non-answer answer is, "it depends."

As I mentioned in an earlier post, my oncologist is recommending a clinical trial for me.  I'm hoping it pans out.  There are a lot of pieces that have to fall into place for it.  Things that do look likely to fall into place, but it's not a sure thing.

The trial is just opening up--in a way that feels very cool because if I was diagnosed even a month before I was, I would have already been on an aromatase inhibitor or estrogen downregulator and not eligible for the trial, so that feels like a good sign--but, because it's just opening up, my hospital's institutional review board still needs to approve it for their patients.  They were meeting at the end of last week, so hopefully that's done with, but if they were to put off making a decision, we wouldn't put off treatment (because cancer) so that would mean I'm out of the trial.

If it is now approved by the IRB, there are still some tests I need to "pass" to meet the requirements.  I should pass them, no problem, but there's a chance that I won't.  Wouldn't be the worst thing ever, of course, because I'd still go on one of the standard treatments, but it would be disappointing.

And if it's approved and I'm approved, there's still a chance the institution coordinating the trial will have delays in opening it on their end.  Which would also mean I'd be out of it.

But, even if all of that works like a clockwork (and I hope it does), there's still the fact that it's a double-blind clinical trial.  This particular one is, I believe (and my oncologist believes), a pretty good bet for someone like me who's not in dire straights and who's not already run through multiple treatments: it's testing 3 different currently on the market drugs to see if they work better together, so it's not testing a new product yet to be used in the larger world and, therefore, not testing things without long track records.  Also, it's a phase III trial, which means it's passed tests for dosing and safety already.  And, most importantly, no matter which "arm" of the trial I end up in (between drug plus 2 placebos, 2 drugs plus placebo, or 3 real drugs), I'll still be receiving the drug that is an accepted standard of care for someone in my situation in any of the 3 arms.  So that part, of course, is not at risk.

But it's kind of a gamble, even if I'm in the trial, as to which arm I'm in and which arm I should want be in.

I'm relying on faith (ok, faith combined with the knowledge that I'll still be getting good treatment no matter what else goes with it) that whatever I'm on will be "right".  I'm hoping for the best, and hoping it brings me to NED (no evidence of disease) and keeps me there for a very long time.

I try to remember that God has a plan for me even when I don't know what it is.  But, unfortunately, God doesn't promise eternal life on earth and doesn't promise there will be no trials in this life, either (trial/trial? I guess it works either way, right?), so there is that.

In the end, this trial could be one of many things that I'm not doing in life, it could be just another treatment that does or doesn't work for me against my cancer.  Or, you never know, it could just be the thing that saves me.

Here's hoping for that last one.  Whichever meaning of "trial" and "save" you want to apply to that, let's just put our hope in that one.

Tamoxifen, my new best friend

Ah, tamoxifen.  Nothing quite like it to divide groups of cancer survivors.

Go on, just look at any forum for breast cancer survivors.  Find a couple of survivors and ask them what they think about it.  Join me at my cancer rehab exercise group, very first day a long-term survivor there brought up how she refused to take it all those years ago and, hey, still alive thank you very much.

As for me, I love the stuff.

For those of you who aren't going through it, tamoxifen is probably something you've never heard of.   But if you've had breast cancer or are close to someone who has, it's going to come up.

Tamoxifen blocks estrogen receptors on cancer cells--in some other parts of the body it acts like estrogen and in some it also blocks.  Many breast cancers are what's called "hormone positive" which means they feed, in part, on estrogen (and progesterone, too, but it's related).  And, thanks to tamoxifen, if you have this ER+ kind of cancer, it's considered a good thing compared to ER- because drugs like tamoxifen can help keep it at bay.

Tamoxifen has been around a long time, it's been generic for over a decade and was, of course, patented before that.  There are other options for women who have gone through menopause (either natural or long enough from chemo to know it's permanent) and don't have bone loss or certain other conditions, but for many women, women like me, tamoxifen is the only real game in town. 

And, unlike chemo and radiation, you keep your hair, don't lose your white blood cells, don't get nausea or neuropathy or any of the other not so fun side effects, and it's just a pill to swallow and you're done.

So, you may be asking, if tamoxifen is so wondrously fabulous, what's not to love?

Well, it's not without side effects, and there's lots of discussion about them, and, frankly, lots of fear.

The biggest side effect for many people, myself included, is hot flashes.  I've been having those since before tamoxifen when chemo put me into instant menopause (did you know aggressive chemo regimens did that?), but tamoxifen can keep them coming.  In my case, after almost a year on tamoxifen and a year and a half since chemo, they're getting less frequent, but still there.

The other one lots of women talk about is weight gain.  I haven't had that one, or at least not that I couldn't better correlate to excess ice cream and lack of exercise, and my oncologist says that one hasn't been shown in clinical trials and people seeing it may really be seeing their metabolism slow down as they get a bit older.  But it's one people talk about--when the no-tamox woman in my exercise group heard I was taking it, the first thing she asked me was whether I gained a lot of weight on it.

Joint pain is also mentioned a fair amount.  I wonder about my current hip thing, but it's pretty constant and doesn't move from joint to joint and it does seem better after almost 2 weeks of rest, so probably not, but who can say for sure?

But aside from those, which, let's face it, are annoying but not serious, there are some rare but serious side effects like blood clots, cysts, thickened uterine linings, and in rare cases uterine cancer.  And if you read all the things that don't come out in studies but people blame on tamoxifen?  Lets just say it covers a lot of ground.

So, why do I take it?

Because, simply put, it gives me a much better shot at staying alive.   Tamoxifen adds 18% to my odds of living past 50--for those of you who care about stats, that's absolute risk, not relative, so 18 out of every 100 women in my position (Stage III, grade 3, and some other particulars that matter) would be dead in 10 years were it not for tamoxifen.

Let that one sink in for a minute.

How much it helps any one person depends on the characteristics of her particular cancer and what your risks of metastasis (aka stage IV, cancer back in places like your brain, liver, lungs, bones) are in the first place.

And that's something your oncologist can talk over with you.

But, for many women, myself included, the risk of dangerous side effects is so much lower than the risk of cancer returning.  And once cancer returns outside the breast, you may be able to keep it contained for some time, but you're pretty much guaranteed to die of cancer (eventually, hopefully) and be in treatment on a constant basis before that.

So, knowing that, I pretty much willed myself to be grateful for tamoxifen.  I decided to make it my new best friend, because, really, working daily to save my life is a pretty friendly thing to do.

This is what I believe about tamoxifen:

• It is not a money making ploy by "Big Pharma" and your doctor doesn't make money by prescribing it to you!  Come on, it's generic and has been for years--no pharmaceutical reps are pushing it to doctors, no one is fudging the figures for the past 20 years.  That's just silly.  (I'm planning on addressing this kind of thing more in a future post, but I need to get it out while I'm on the tamoxifen topic)
• There can be some annoying side effects, but for me and many other women, it's a choice between hot flashes and greatly increased odds of death--trust me, I can buck up and take the annoying side effects in exchange for, you know, life.
• There are some risky side effects, but if you're concerned, talk to your oncologist.  No really, sit down and talk to your oncologist.  That's what you pay her or him for.   Your oncologist has the figures and can talk to you about them.  But if you have a 0.1% chance of blood clots with it and a 18% greater chance of being dead without it, well, you've probably placed bets with worse odds than that.
• The annoying side effects stop when the tamoxifen stops.   A lot of women seem to be afraid to even start taking it, but if it gives you real trouble, you can always stop taking it (but, please at least talk to your doctor about substitutes (like ovarian suppression and AIs) that might be better for you).
• The annoying side effects may get better with time.  It's anecdotal, but lots of women say they do and that seems to be the case for me, too. They're now saying 10 years on tamoxifen is a good idea, but remember you may very well find it's 1 year of hot flashes and 9 years of perfectly normal life. 
• There are some things available that can mitigate the side effects--if you're having a really hard time, talk to your doctor before you just up and quit.  There may be something easy you can do to fix the problem and still get that better shot at living.  
• Tamoxifen is tamoxifen.  You may be the classic black box warning for some other drug, but that isn't much of a predictor for how tamoxifen will interact with your system.
• The truly sucky thing about cancer and mets is there are no do-overs.  With all this cancer stuff it's true, and it stinks.  There really is no, "I'll try x and if it doesn't work, then I'll do the something else," and that scary.   It's literally life and death here.  Sobering, frightening, but maybe also focusing in its own way.

It's kind of funny, I hate disagreeing and generally avoid confrontation and confrontational topics.  I guess this tamoxifen thing has been kicking around in my head too long and seems to have built its own soapbox.  Which I seem to have been all too glad to step on and start preaching.

But, tamoxifen is important to me.  If there were 10 of me in a room, two of us would have our lives saved by it.  And I hate the sweaty, blushy hot flashes.  I hate thinking about blood clots and uterine cancer.  And if there is weight gain to be had, that's not something I'd welcome with open arms.

But more than those things I hate wondering if I will live long enough to see my girl grow up, see my unmarried stepkids get married and my married stepson start a family.  I want to grow old with my husband and see how this story ends.

And if tamoxifen can help me make that happen, I am grateful.  Grateful enough to endure some hot flashes and joint aches if that's the price of living.