Tag Archives: Ibrance

Another Call of Duty

cancer call of duty

I’ve spent the day writing apology emails to the people I blew off this week after being called up for active duty as a Breast Cancer Conscript. While I expect to battle this disease for a very long time, learning to manage it is another matter entirely.

The battle requires aggressive medicine that’s guarranteed to stop working at some point, which means moving to another aggressive medicine with its numerous side effects that seem to play out differently in my body than those who have gone before me.

As a Breast Cancer Conscript, I patrol cancer’s parameter under mostly peaceful circumstances until I come under fire. The higher ups (that would be my doctors) move in new artillery (that would be the new drugs), allowing better targeting of the enemy. But getting used to using it is a bit like a sniper who ends up battered and bruised from the recoil of the high-powered rifles he’s using until he gets used to the way it fires.

That’s been me this week, as I juggle my non-cancer life (and believe me, I do have one) with my cancer tour of duty.

In my non-cancer life, I am a freelance writer, which suits me well, both because I enjoy the vocation and because I can adjust my schedule when I need the downtime to acclimate to new meds and their side effects or for a day’s worth of scan’s or tests to see if they’re working. My current goal is to shift from selling the stories I write to becoming a published author, so that instead of getting paid one time for my work, I can generate residual income. That’s not a lesson of cancer, but of the financially successful. It’s just that cancer makes it all that much more necessary.

I’m no longer a new recruit to this war, but I am new to the warfare tactics. So when I started having side effects from the Ibrance – namely bone pain – I shrugged it off and decided to just grin and bare it. When it got intense, I went out and exercised, which kicked up enough endorphins to make the pain unbearable.

With normal pain from aging or overuse, your mind wraps around it and can tune it out, so the intensity fades and you can get on with your day. Or you know or have learned how to manage it with an ice pack, laying off of it for a while or downing a pain reliever like an aspirin or Ibuprofen.

With cancer medication side effects, it’s a whole new world. Sometimes the pain will disappear after a few minutes. Then, it will crop up in another body part, from say the leg to the arm or shoulder, a sort of Whack-A-Mole of pain surges. Sometimes it will be a dull ache, other times an intense burning. Sometimes something as simple as an allergy relief tablet such as Claritin will take it away. Other times, even doses of a high-strength painkiller like Oxycodone don’t work.

And there’s no rhyme or reason to it. I can go a day or two with no pain, then suddenly a flare up, which can bring on nausea and irritability. I’m amazed at how pain affects my moods.

My doctor has been sympathetic and liberal when it comes to offering drugs to counter the pain. The problem is, those drugs are addicting. In my age group the leading cause of death isn’t cancer, but overdose from opiods or suicide because of dependency. A few in my circle have suggested medical marijuana, which can alleviate pain, nausea, act as a mood booster – and most promising – is a possible cancer killer. Of course, our puritanical medical and political establishments frown on this. I have yet to have the conversation with my doctor. For now, he’s agreed to lower the dosage of the Ibrance. We both agree it’s too effective – bringing down my tumor marker numbers quickly, but obviously doing damage to the healthier parts of my body.

Yes, there are many promising drugs out there that give me hope for a long, healthy life. But I’m learning they all come with a price tag, each one heftier than the last. And while I win the battles, it’s still a long, draining war.

 

 

 

Tagged , , , ,

Ibrance Romance

clinking glass

AS GOOD AS IT FEELS, LIFE’S ABOUT TO CHANGE AGAIN

An oversized brown box arrives on the front porch. Inside is a plastic bag. Inside that, is a small bottle, maybe three inches big. Inside that are 21 Ibrance capsules which will take me through the next month of this leg of my cancer treatment.

The bottle of pills cost $10,000 a month, so I imagine it doesn’t seem indulgent to the specialty pharmacy to send it out overnight in this oversized package. The plastic, resealable bag is thick. I can think of a million reusable ideas for it if it didn’t contain the ominous skull and cross bones and a warning that reads: Dangerous. Toxic. Chemotherapy drugs. Do not handle.

I wonder what my trash men will think of me. And I realize I now live in a toxic world, one where I can no longer recycle or repurpose. One where there’s no turning back.

According to my first pathology report five years ago, my cancer cell was an estrogen-hungry fool, making her easy to decimate. I agreed to an aggressive IV chemotherapy treatment that shrunk my tumors to mere slivers, and the surgery and radiation that followed erradicated them entirely. I endured baldness, bone pain, nausea and weakness that I thought I’d never recover from.  For my efforts, my doctors were sure I was cured, free of the pernicious cells.

AND THEN THERE WAS THE ONE THAT GOT AWAY

But it turned out, one survived. My onocologist would later explain that tumors are like jars of pebbles and the first pathology report told of a larger rock in the jar. What was left was a grain-like piece of sand. This cell didn’t eat much estrogen. She was very slow growing. I called her my Crack Whore cell, because it was amazing she existed, let alone thrived in the Country club setting that’s my body. My Muffy and Buffy cells were outraged that she’d gained admittance. They want her banished.

I agreed, of course. And so we sought to oust her with a combination of drugs. One, called Xgeva, fortified my bones, which is where she took residence, relegating her to a cardboard bed existence outside a barred –bone entrance. The other, called Faslodex, filed the edges off the estrogen the Crack Whore feeds off of so she couldn’t grasp them when they floated by her. The third, called Arimidex, leeched the estrogen out of my body, in an effort to starve the Crack Whore completely.

SO WE ROCKED HER WORLD

In the beginning, the new hostile environment worked. The Crack Whore stopped having babies and Muffy and Buffy filled in with their own children.

Then after about six months, the Crack Whore realized she didn’t need as much food, didn’t mind the cardboard bed and started pimping herself out again. Judging by the CT scans I had last month, she hasn’t given birth, but she’s likely pregnant along with her other Crack Whore offspring.

So last month, I started  a new approach. Nix the estrogen leeching drug and replace it with the Ibrance, a drug that blocks proteins the cancer cell needs to replicate. A Crack Whore cell tubal ligation of sorts.

THE MARRIAGE DILEMMA

I call it the Ibrance Romance. When I started taking the drug, it seemed so much better than anything else I’d been on. I was in love. Three weeks into it I crossed the matrimonial threshold and suddenly thought  to myself “What have I gotten myself into?”  Now I wonder if I can endure living with it the rest of my life or if I’ll scratch its eyes out.

While my doctor told me I shouldn’t experience any side effects from the Ibrance, he explained that the drug suppresses my bone marrow – that’s the place where red and white blood cells are made – so I will likely see my blood counts go down. I need to go in for tests to be sure they don’t go too low, in which case I’ll need to take a break from the drug or go off it completely. For that reason, I can only be on the drug for three weeks at a time, with a week off to give my body time to replenish the damaged bone marrow.

It’s a bit like going into Muffy and Buffy’s den and messing with their Netflix streaming. But knowing that Muffy and Buffy are the Country Club set, I kept them preoccupied with activities. I make lots of dates with friends – many who are in the same boat – to run, bike, swim, walk. Keep our endorphins up, the dopamine pumping, the serotonin flowing. For Muffy and Buffy, it’s a cocktail party and they didn’t miss NetFlix.

PARTY’S OVER

Then came the hangover. Searing pain in my bones that were rebuilding themselves, from a restless aching in my toes up through my long, leg bones to a burning in my rib cage and pounding in my head like I’d been hit with a baseball bat. I took a pain reliever, which didn’t much help.

I decided to respond to pain with pain, longer runs that inflame my hip flexors, cancelling out the bone pain, which works until I have to go to sleep.  And then, even that stops working.

The pain is so great, I call my doctor for an answer, something stronger to relieve the pain. And while I wait for him to return my call, I begin to cry. I cry because it hurts. I cry because I know I now live in a toxic world where I can’t recycle or repurpose and there’s no going back. I cry because my body has to work so hard to heal itself and there’s nothing I can do to change that. I cry because I know this is the tip of the iceberg, that I’m in the rabbit hole and down is the only way I can go.

I cry until I hear a knock at the door. I wipe my eyes, as I hear giggling and clinking glasses on the other side. It’s Muffy and Buffy.

“Cocktails anyone?” I hear them yell on the other side.

Tagged , , , , , , , ,

From Patient to Profit Center

winning lottery ticketTurns out CVS Caremark has found a cure for cancer: induce a heart attack so there’s no fear of succumbing to the deadly disease.
This was Britany’s quest, I’m sure, when she called me to tell me my new prescription had arrived.

Ibrance, the new drug I’ve been prescribed, is just out of development, giving it a hefty price tag. I can’t purchase it any longer at my local pharmacy, where I have compassionate friends. I now need to go through a health-insurance appointed specialty pharmacist. I should be grateful that I’m getting an actual live person to call me, rather than an automated recording to deliver me this news. Shame on me, I’m no

 HELL TO PAY

“There’s a 70 percent co-pay,” Britany announces matter-of-factly and slightly annoyed.”That amounts to $4,380.”
She pauses, waiting for a shriek. When I don’t comply, she adds, “That’s a month.”
“You do realize this is a life-saving medication?” I reply, brittlely and equally annoyed, even though I feel a hot wave of fear wash over me, tying a knot in my intestines where Britany’s bombshell has gone off.
“Well there’s a number I can give you to call Pfizer for co-pay assistance,” she says.
I grab a pen and she rattles off the number.
“If you’re accepted, call me back,” she says, ready to sign off. I can’t see her, but I can feel her reach to disconnect the call.
I get that Britany probably makes only $10 an hour and has problems of her own and that while her job is obstensibly to make phone calls, in truth, it’s to drop bombshells into the laps of the dying or nearly dead and then walk away, without concern. That takes a great deal of desensitization, which I should have empathy for, if not a degree of awe.
“Is there a number I should call you at?” I ask before she’s able to finish the task.
“Oh yeah,” she says, then rattles off another 800 number. She knows that we will likely never speak again. Still, I can hear in her voice a slight change that says “Oh, this one isn’t the walking dead only the slightly dead. Maybe she’ll have a chance.”
I immediately dial Pfizer, realizing that Britany has delivered me this news after hours and there’s a good chance no one is around. During a 20-minute, nail-biting, Muzak infused on-hold wait ,  I realize how much I already miss my local pharmacist and consider running down there to load up on anti-nausea medication to get through the remainder of my life if this is any indication of how it’s going to go. Finally cheery Ian answers. I tell him about my conversation with Britany. He’s happy to oblige me and directs me to an insider Web site where I can immediately apply for assistance.

THE $4,380 QUIZ

It turns out, there’s a three-question quiz, which I pass. I tell Ian I can take it from here, as the next screen just asks for information so it can print me a copay card. I tell Ian he’s saved my life and wish him a winning lottery ticket in return. This makes Ian even cheerier.

I fill out all the two-starred fields required, but the Web site won’t accept my submission. The panic returns. A carrot dangled in front of me. I call Pfizer back. Gratefully, the call goes through immediately. This time I get David, whose a bit more somber than Ian, but equally eager to help. We go through what I’ve done, what I haven’t done, what’s checked,  what isn’t, what the screen says, what it doesn’t say. He finally diagnoses the problem as the laptop I’m using.

“You’ll need a desktop computer,” he said.

“You do realize desktops are obsolete, that no one has them any more?” I answer.

“Well try your phone.”

“I don’t have a smart phone,” I say, realizing that technologically I’m stuck in no-man’s land. No longer an archaic desktop user and not yet hip enough to have a smart phone.

I do, though, have another laptop. I can’t really explain why, other than for situations like this.

“Wait,” I say. “Let me try another computer.” I quickly load the site, pass my three-question quiz, update the two-starred registration fields and voila, I’m accepted. I get a card.

I wish David a winning lottery ticket as well for saving my life.

LIVE-SAVING MEDS TAKE A LIFETIME IN CVS CARLESS’S TIME ZONE

I call back CVS Caremark a bit amazed that I’ve been able to accomplish a $4,000-plus-a-month savings in an hour’s time. Where’s Britany now? I get another David, who has all of Britany’s suave and sensitivity.

“Your address?” he says.

I rattle it off. There’s a long pause. He doesn’t explain. Finally, he starts asking me for numbers on the copay card. The knots in my intestines start to loosen.

David isn’t a fast typer, I learn. When he finally gets all the information he needs, he informs me that it could take up to 72 hours for CVS Caremark’s oncology team to input the information. I’m afraid to ask, isn’t that what he just did? Instead I say,

“You do realize this is life-saving medication?”

“I’ve marked it rush,” he says, in his monotone voice.

“But there’s no guarantee?” I offer.

“Precisely,” he says.

Still, I wish him a winning lottery ticket and thank him for his effort in saving my life. I know it’s dramatic, but he needs some sort of shot in the arm, an “Atta Boy!” at least.

When I hang up, I realize that this is the “mixed bag” my doctor spoke of at my last appointment. I have gone from patient to profit center. Yes, there are many promising drugs, tests, protocols and procedures for those of us with cancer. And all of them come with a huge price tag that everyone wants a piece of, from the drug companies to the health insurance companies, from the specialty pharmacists to the hospitals. If I expect to survive, I need to harden myself and brace for this roughshod treatment.

DEATH PROFITS

I look up the cost of a share of CVS Caremark. It’s trading at $102. I think about buying it, knowing that CVS Caremark won’t listen to my concerns as a profit-center, but might as a shareholder looking to reap a profit. Finally, we’ll have something in common.

Tagged , ,