One Tagrisso Story

So HealthWell Foundation (HWF) had no issues with the Specialty Pharmacy’s application on my behalf for the $3K+ monthly co-payment of Tagrisso.  Within two days of hearing its name, I received HWF’s letter that screamed APPROVED on the heading! It told me to contact the Specialty Pharmacy to get the delivery of the pills started.  How can anyone not be impressed with such speedy service?

However at the same precise moment I also received a letter from the Specialty Pharmacy alarming me that the information in my file was incomplete and they could not finish the application process on my behalf and to call them as soon as possible to avoid delay! Fortunately, the recipient of the wildly conflicting messages is an awesome genius who completely understands the shortcomings of mere mortals. I picked up my smart phone and with a little tremble in my voice, feigned confusion, but in the end, simply asked, Okay, when are you shipping the Tagrisso? And the rep answered, Tomorrow. Be sure to be at home to sign for it otherwise the delivery guy will turn around and take the package back with him. I could not imagine the bureaucracy that would ensue if such an event happened. She gave me the tracking number, which I handily found in the UPS’ hi-tech tracking system.  It showed time delivery window: Between 6:30 a.m. and closing time, which was 7:00p.m.  I thought, Wow! That pins it down close enough. I spoke to a UPS representative and played a scenario for her when she couldn’t make the delivery window smaller:  What if I wait all day and it’s already 7:00p.m. and the package has not yet arrived?  She replied, That means there are too many deliveries and he’ll keep delivering packages until you get yours.  That knocked me for a loop.  I had bought my tiny manor in the retirement-resort-living-at-its-best to sunbathe near the hot whirlpool or rub elbows with fun people at events during the day, then sleep in the manor at night. Pacing the manor carpet for 12 straight hours had never occurred to me.

Living alone, I had no choice but to hang around the manor to wait. It happens when the Diva’s days of delegating tasks are long gone. So wait for the UPS dude, I did. I was sure about the dude thing because I have never received a UPS delivery from a dudette. Finally, at around 5:00 p.m., my hero came bearing the package. He gave it to me in exchange for my signature on his hand-held computer tracker.

I tore into the corrugated carton box like mad and found (1) a plastic bottle containing 30 Tagrisso pills inside a see-through plastic bag marked Chemotherapy and (2) Product literature – everything one ever wants to know about Tagrisso: side effects, conflicts with other drugs,  the sun, people, etc. I had a major concern: What about wine or beer? It said, Limit alcohol consumption. Aha! There’s a margin for tolerance. I liked that.  I had another question: When is the best time to take Tagrisso? It said, Take it once a day at the same time everyday so you don’t forget it. Take it with or without food.

It was almost 6:00p.m. and a hot deliberation was raging in my head.  Should I take the first pill now? Why not? What good does it do to wait for tomorrow? I remember reading that tomorrow waits for no one. The literature said one of the reported side effects is shortness of breath. What if I have shortness of breath while I’m snoring? I could wake up dead in the morning! Maybe that’s the reason to wait for crack of dawn, take the first pill, then have all day to monitor side effects like dizziness, nausea, diarrhea, shortness of breath, yada, yada. Nah. Why did the Tagrisso docs not express themselves exactly against taking the very first pill at night?  All the pill container said on the label was, This drug may impair your ability to drive or operate machinery. No prob. I had no immediate plans to operate a backhoe that night. It also said USE CARE until you become familiar with its effects. Define CARE.  I concocted a couple of lame definitions that lead me to the eureka moment: Today is the day. Tonight I take my very first pill and henceforth every 6:00p.m. every day.  I bravely swallowed one 0.5cm x 1.5cm 80mg oval pinkish pill, chug-a-lugged a glass of water, and plastered a smile of satisfaction across my face.

Just before I hit the sack, I remembered something –  to allow for some drama should shortness of breath occur in the middle of the night. When I laid me down to sleep, I positioned my arms like an X on top of my chest a la Cleopatra minus the crooks.

Around 3:00 a.m. my  stomach growled and woke me up.  I was starved.  It happens when my blood glucose is around 75 or 80. My body talks to me, I listen and obey.  But wait! As I was walking to the kitchen to fix me something to silence my stomach, I remembered the very first Tagrisso coursing through every cell of my body.  Was I having side effects? Obviously I did not have a shortness of breath but a shortness of chow! Maybe something else had happened. I rushed to the bathroom and inspected my body for signs of side effects that I had read from posts at Inspire.  Rashes on the face or body? None. Headache? Dizzy? Pain? Nope.  Grandma Honey had written about her eyelashes growing long, like they did on Tarceva.  I inspected mine, ready to bat them shamelessly if they had grown a millimeter during the past 9 hours. Nothing there. Finding nothing untoward, I devoured my midnight snack and crawled back to bed.

I’ve been on Tagrisso for half a month now and have seen zero side effects.  Nothing. No nausea, headaches, diarrhea, rashes, shortness of breath, dry skin, cracking nails, mouth sores. Nothing. I wonder if Tagrisso is doing something or just sitting there. That’s the same thing I said during the first four months of zero side effects on my CO-1686.

That’s my Tagrisso story. I’d love to hear yours, if you have any.