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Afinitor Chronicles, Ch.1. cont.

Posted Apr 30 2010 12:00am
I am not a happy camper. Okay, maybe a little happy...but not completely.

Afinitor is a new weapon in the fight against kidney cancer. Known in the trials as RAD001, it was approved last year. I had heard of RAD001 but was taking Sutent at the time, and since things were going well enough, we had no plans to change. Besides, Dr. Margolin my oncologist then, tried to add me to a trial before starting Sutent, and I failed.

A high liver enzyme exempted me from what I suspect was RAD001.

I don’t actually recall it being for RAD001. It could have been for some other trial but my mind tends to dismiss things that have no direct effect on me. Therefore, we went to Sutent. I’m glad we did too because the Beast was kept under control for more than two years. Nevertheless, things change and here we are with Afinitor.

Or maybe not.

The most common side effect reported by warriors using the Big A is mouth sores. Well, I am going on three weeks now and still nothing. Fatigue is something I feel daily as I did with Sutent. But no sores. My taste is extremely good and after months of no taste, I have to quote Jackie Gleason, “How sweet it is!”

As I have said before, the sicker the med makes you, the better it must be working. Isn’t that the way it’s supposed to work? If this is one of God’s little tricks to show me the treatment works well without my being ill, all I have to say is that it isn’t cool. But then, God has a strange sense of humor. Just when you think you have things figured out, ZAP! He pulls the rug out from under your feet.

Let’s think about it a minute. The chemo attacks the bad cancer cells. It attacks the good cells as well. Wouldn’t be fair to totally ignore the good cells now would it? I mean there could be a cellular wolf in sheep’s clothing posing as a good cell and biding its time so it can jump up and start dividing like mad.

Sneaky Beast eh what?

I’m not lamenting the lack of extreme side effects. Nor am I asking they attack me full force to make my life with kidney cancer a living hell. Cancer can do that all on its own. But, I do want to see some sign that Afinitor is working even a little bit.

So, here I am. Feeling well. Able to get out and about. As I write this, I am reveling in the local
library and enjoying being surrounded by books and people who love books. I found a writing magazine that suggests ways to breakthrough a writer’s block and as I perused the articles, I began feeling a bit inspired to get busy writing. So here I am.

When I was on Sutent, the side effects were mild enough that I actually felt guilty at their less than impressive impact on my life. Others were writing of how they were unable to stand, let alone walk, while I was able to attend college classes. Many could not eat because of nausea or get out of bed while a week into the break I was able to wolf down a steak dinner with all the trimmings.

Yes, many times I would find myself falling asleep while doing homework and awoke an hour later to find myself face down on a pillow, my glasses askew and saliva dripping from my open mouth. Not a pretty sight. But as soon as I awoke, I felt like a new man. I was re-energized with a new vitality that would last for several hours. It was great.

Thankfully, there were many who told me to not give in to the guilt and enjoy the effectiveness I was experiencing.

The cough is clearing up so we are pleased with that. Doc Benzor prescribed meds to clear my lungs and it is almost completely gone. The usual lab work was done and we see her on Monday.

Then we see Dr. T on the fifth to discuss the Afinitor side effects and to give more blood.

Tomorrow is a bittersweet day for me. We are going to pay our respects for a fellow warrior who lost his battle to RCC then we will go to watch our grandson complete in his first karate tournament. The circle of life, if you will, one moves on to the next level then we go on with life with a youngster with his whole life ahead of him. It’s kind of poignant when you think about it.

As a word of encouragement to anyone reading this, friend Shaun Tierney , who shares this journey with me, was highlighted in an article covering treatment. It’s a great and positive article so check it out. I hope you enjoy reading the good news as I did. There is hope folks.
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