Abbot and Costello doing Who's on First |
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!
Greetings - It sounds like a good decision to stay with the Ibrance. Maybe it's working 'enough' in spite of the breaks you had to take. O my, insurance companies. You must have the patience of Job, or Kathryn, or Kathryn-Job.
ReplyDeleteDuring chemo I had to talk with my insurance company about why our policy was cancelled (it wasn't really) and I started sobbing as soon as the rep answered the call. Embarrassing conversation, me coming up for air only to start sobbing again - yikes.
I do hope Ibrance arrives on time - you deserve it! Martha
Thanks, Martha! I just posted a follow-up a minute ago, so you'll see the insurance/pharmacy seems to be straightened out, thank goodness.
DeleteI'm so sorry you had to deal with that and during chemo, no less, talk about stressful--no wonder you were sobbing! It may have been embarrassing at the time, but I bet it got the message to the representative pretty fast that this was an important thing for them to work out for you!