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Archive for the ‘Cabozantinib (Exelixis XL-184)’ Category

Last Wednesday, Dorothy and I found ourselves saying something that seems to be a theme of the last few years. We had just spent three hours at the clinic in Las Vegas, meeting with our oncologist and waiting around for my Zometa infusion. As we walked out of the building, we looked at each other and said, almost in unison, “Well… here we go.”

We are going somewhere again, not quite sure where, nor for how long, and least of all where it’s going to take us.

It’s another bend in a road that we never planned to be on, don’t particularly like, and don’t know how long it takes to get wherever we are headed.

I had a remarkable response to the Exelixis clinical trial during the last seven months. Within a month of starting the drug my bone pain and numbness were gone, and the scans (every 6 weeks) showed tumor regression or stability. But for whatever reason, it’s losing its effectiveness and two new bone spots showed up in the scans this month. My PSA has gradually risen from 143 to over 600 in those seven months, and while that was a little concerning, as they say, no one could say why it was rising so much when the tumors appeared stable.

In any event, it’s on to the next phase: docetaxel with prednisone, and I’ll be part of a blind placebo trial that adds Revlimid to the mix. Early trials have shown very positive results for those who get Revlimid, but we won’t know for sure if I have that benefit. Docetaxel alone should still be quite effective in bringing down the PSA, which would be good at this point.

So, here we go: another bend in the road, another unknown destination. One step at a time, and it’s a great comfort to know that Dorothy and our three children and two sons in law are walking it with me.

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The last two months have been a blur. This is turning out to be one of those overloaded years: a graduation, job hunting, trip halfway around the world, emergency return from halfway around the world, wildland firefighting, wedding plans, mission call… and that’s just the kids. Who are not kids, but adult children.

We like to be involved with the kids, and so time has been flying by. I’m on my fifth month of the clinical trial, which may end soon so I can start Provenge, the first vaccine-type cancer treatment. That five months has been a gift, time that I would not have otherwise had from a drug that’s not yet available for general use. It’s been worth all the trips to Las Vegas, and it’s been reassuring to have family and friends help with travel and a place to stay.

Our summer has seemed very short, since it was cold until June and we just saw our first hailstones yesterday morning. Not enough time or energy to work on landscaping, although I hope to have some time before November, when the snow starts in earnest.

Survivors at the Summit 2010

For three years in a row, our family has marked the summer with a hike at Snowbird in August. Survivors at the Summit is the annual fundraiser for the Cancer Wellness House in Salt Lake City. After a pancake breakfast, you can hike or take the tram to the top of Hidden Peak, where there are bright yellow flags flying with names written on them. It’s a beautiful tribute and a chance to reflect on how that disease has changed the lives of so many people.

This year I sponsored a flag for my sister-in-law, who didn’t know a year ago she had lymphoma. And another flag flew for my friend Wayne, who stopped chemo treatments when he was ready to let go and enjoy the time he had left, rather than endure the side effects for a few more months. I was in Vegas the last time he came to our cancer group, and didn’t hear the news of his death for a couple of weeks, so it was a disconnected sort of experience. I didn’t get to say goodbye.

Survivors flags

Last year I wasn’t in great shape and the weather was icy (about 40 degrees at the summit in a rare storm), so we skipped the hike, but this year we went for it: 3 miles, 3,000 foot climb. And it took about 3 hours with all the stops to catch my breath and reassure myself that I wouldn’t have a heart attack. Which I did think, several times, was a possibility. But we just focused on the trail, making up the next steep stretch, and stopping now and then to look at the canyon and valley below.

When I dragged myself up the final steep slope, literally taking it a step at a time with a couple of hiking poles my nephew shared, I was surrounded by family. I wasn’t going to get all emotional or anything, but I did. When I reached the top and rang the big metal bell, it was bittersweet. I’ve seen friends recover from cancer, and I’ve had friends die from cancer, and I’m somewhere in between. Memento mori, indeed.

Wayne Knighton

It’s been a hard 3+ years, and a crazy summer, but I’m happy to have support on this unexpected twist of the road. All you can really do is look ahead to the next bend of the trail, and keep walking.

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