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The Afinitor Chronicles

Posted Apr 09 2010 12:00am

So, this week I was supposed to start Afinitor. Hint for newbies: when you are given a new prescription (script), don't wait until you only have a few days before starting the ball rolling.

Usually, I am good at getting a head start on things but I must be going through Sutent withdrawal or maybe I am still celebrating Sutent brain. It's been proven by many (I forget how many) Warriors who have been struck with memory loss. What was I going to write?...Oh yeah!

We waited too long to order the stuff. I guess we just got used to getting Sutent so easily and thought it would be an easy transition. Silly us.

I took the script to Walmart and turned it in. The tech jumped when she saw how much it would cost ($8300 for 30 capsules). Naturally they said they would have to order it. Not surprised, I said fine and went home. A while later I got a call from the pharmacy.

"You're ok as far as the cost is concerned," says the tech. "You don't have any out-of-pocket cost."

"Good," I replied.

"The problem is that we can't get it. Our supplier doesn't carry it."

And so began what I am calling The Afinitor Chronicles. I think I will document my adventures here for others to see. That way, they may know what to expect. Wish I had done it with Sutent but that's water under the bridge.

So, when you change over from something to Afinitor, check with your pharmacy to find out how long it will take to get it so you can start it when you're supposed to.

After calling Novartis, who makes it, we got a phone number to give to the pharmacy. They called it and got things rolling. The script has to go Walmart's Specialty Pharmacy who will fill the order and ship it directly to our home. It seems we will have to do this every time.

We asked them to get it to us ASAP. We will get it Tuesday...or so they say. Can't wait.

Meanwhile, my foot blisters are clearing up and my feet are returning to their once soft condition. Glenda often lamented their rough condition caused by Sutent. "They used to be as soft as a baby's behind," she'd say.

She disliked seeing me pull off round chunks of hard skin that were about to fall off. I disliked having to limp every step of the way when I went someplace.

I didn't see that Afinitor causes foot blisters but the side effects are scary. I'll list them on the next essay to keep this one as short as possible. I have also begun planning dietary changes to help counteract the effects. Nothing big, like going vegan or using holistic therapy.

I don't have the discipline for that. Just big enough to make a difference.

We go see Dr. T in about five weeks so he can see how I handle the side effects. I'll post that as well.

So, next will be Chapter One of The Afinitor Chronicles.
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