Archive for the ‘Zytiga’ Category

It’s been five months since I have made any regular visits to Las Vegas, and oddly enough, I’ve kinda missed it. But I’m gearing up for a new clinical trial and getting back on the road to my cancer treatment home away from home.

It’s just not easy to explain briefly how my health has been, but I’ll try. Last August I started my fourth treatment, third clinical trial, with Dr V.  It combined Taxotere (a standard chemotherapy) with Lenalidomide. The chemo lasted until December (they actually pulled the Lenalidomide after a couple of months when they found no benefit in early trial data).

So starting mid-December, I was off chemo and had no new clinical trials ready to go. We decided to start with Zytiga (abiraterone acetate), a new drug that had been approved by the FDA in April 2011. Since there was no study protocol, I began seeing a new oncologist in Salt Lake who could monitor lab work and give me monthly injections of Xgeva (denosumab), a bone-repair treatment that was FDA-approved in November 2010.

Somewhat surprisingly, I had good results for four months on Zytiga. It was surprising because my first clinical trial (Tokai’s TOK-001) was a drug that is quite similar to Zytiga. It seemed likely that my cancer might have already learned from that one how to get around this particular drug, which inhibits the CYP17 enzyme that is “required for androgen biosynthesis” (try reading the official literature on this drug for some real fun). Essentially it blocks anything, prostate cancer cells included, that tries to build androgen hormones. I like to think of it as an intense hormone blocker that has turned me into a soft blob of a human being. Something between the Michelin man and Mr. Bill. And then add on white curly hair from my chemo-perm. I don’t look like myself, lately.

The thing is, Zytiga worked for me, probably because I had been on a fairly low dose of the Tokai drug. In December, my last CT & bone scans showed that I had somewhat extensive bone involvement with my cancer, in spite of the chemo; my PSA was in the 300 range. Since then we’ve only really checked PSA levels, and they dropped as low as 97 before rising a little (112) and then jumping up higher (186). So, it looks like there are cancer cells that have found a new way to survive.

For whatever reason, I’ve had to deal with extensive pain since the beginning of the year. Honestly, I don’t know what’s intensifying the pain. I assume it’s tumor activity in bones, but with my PSA dropping while the pain increases, that doesn’t seem to tell the whole story. It could be that Zytiga is part of the problem, since known side effects include joint swelling and pain, and muscle discomfort. The pain could be related to Xgeva which, like Zometa, can induce muscle pain and flu-like symptoms. Of course, no drug company wants to take responsibility for my pain, and with multiple things going on, there’s rarely a clear answer.

Happily, we’ve got a new clinical trial now that my PSA is rising. Bayer has partnered with a Norwegian company, Algeta, that developed a treatment called Alpharadin. It uses a form of radium-223 to deliver low-intensity radiation directly to cancer cells. It’s a smart idea that has improved on similar drugs like Samarium-153, which has been used since 1998 for pain management of bone metastases. Alpharadin is on track for FDA approval, and the best thing is that Bayer has opened up their phase III trial for compassionate use. This means that if you qualify, they’ll let you in on the trial so you don’t have to wait for the FDA to grant their magic stamp of approval.

So, I’ve got the paperwork done and it’s looking like I can start within a few weeks. I had a quick visit at the end of April with the doctor, and yesterday I saw the clinic’s radiation oncologist for a review of my treatment history to get everything OK’d. Now we just have to wait for the radium to be delivered from some secret location in Norway

So, Las Vegas, I’m coming back. Be good to me, OK?


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Might as well start with the well-worn symbol of being in cancer treatment: it’s like that proverbial, rickety roller coaster that I remember from trips to the Lagoon amusement park in my youth.

borrowed from Shaan Hurley's Flickr page

Everything is going up and down all the time: my mood, my sense of well-being, my lab numbers. You take a steep plunge, roll back up, then level off and catch your breath, however briefly, before the next steep drop and following lift as you rattle up the tracks. The only difference between this and a real roller coaster is that you never know what’s coming around the next bend.

My December visit with the doc was not easy. The docetaxel was not doing much, so the key numbers were way up (PSA 300-ish from about 150, CTC 25 (yikes) while it was previously in the 5-8 range). My red blood cell count was way down, pain was getting in my way, I was fatigued from anemia, and so on. “In the Bleak Midwinter” was my theme song. That was a rare day when I showed signs of a new side effect, for which I believe the technical term is “crybaby syndrome”. I was just weepy. Damn, damn, damn. Cancer just wasn’t fun any more.

The doc was unusually serious, almost somber, as we talked about pain management and a few possible treatments I could change to in case the new one, Zytiga, didn’t work. Zytiga  (aberatone acetate) is similar to my first clinical trial drug, Tokai’s TOK-001 (now christened with a real name, Galeterone), so it’s possible that my cancer cells have already learned how to get around it. Possible. We wouldn’t know until I tried it.

I trudged out of the clinic, moping along to catch the bus, too tired and sad even to stop for my favorite sushi. The plane was an hour late going home, the sandwich I finally ate at the airport was so-so, I just closed my eyes on the plane and tried to sleep.

So, fade to black on that one. This week the scene is brighter. We’re now four weeks into Zytiga, and the numbers are down, and up: PSA 133,  CTC 16; red blood count up to nearly normal (from a seriously low count, although I don’t remember the numbers). It was like December never happened. I’m happy, the doc’s happy, I shared homemade cookies with the staff, did my brief TV interview, and skipped out of there a new man.

We’ll keep on with the Zytiga for as long as possible, and there’s yet another new clinical trial that will hopefully be waiting for me when the Zytiga poops out. At least that’s this week’s status. Things do change frequently. There’s always the sudden drop coming around a bend that you don’t anticipate, and your stomach falls while your head is spinning and you don’t know whether to breathe or puke or scream.

For now, I keep telling myself, just hold on and enjoy the ride.

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We’ve turned the corner of dark winter days, past the solstice into the cold but gradually longer days of December and January.

Van Gogh, Snowy Landscape with Stooping Woman

This is the time of year when I like to take long walks in mid-afternoon, squinting into the yellow glare of weak sunlight reflecting on snow and icy water. I vividly remember walking five years ago in December, listening to Steve Tibbets and Choying Drolma’s album Cho as huge rounded gatherings of birds swerved and fluttered in the air above me. I was following the paved trail along the Jordan River in Riverton, at the south end of the Salt Lake Valley, where straw-colored clumps of grasses provided the only color other than white snow and brown-gray tree trunks and limbs. Those birds seemed to pull my thoughts along, dizzying as they shot between branches, then lifted as a single body into the sky and disappear ahead of me. Moments later they’d return, fluttering again, then settle down to a quiet circling around the trees that lined the quiet, almost empty river.

Five years, but so much living between then and now.

I saw my oncologist on December 20, first day of Hannukah, the day before the solstice this year. Not surprising, but disappointing, a change of plans: I’m no longer on docetaxel and have started taking abiraterone acetate (Zytiga®) instead. In the last six weeks I’ve felt a fair amount of pain in various bones and muscles, and it turns out that my PSA has doubled to around 300 and CT and bone scans are showing increased lesions in the pelvis, spine, and a few ribs. Here we go again.

We’ve had almost no snow this winter. A couple small storms in December, even though the first snows were in early October and continued into November. It feels odd, and here on the mountain people are waiting for the big snows to return. Who knows? We had record amounts of snow last year, so no one’s concerned about drought. It’s just bitter cold, nasty gray smog socked into the valleys with the temperature inversions, and now and then a small window of blue sky, like today.

Although I’m working this week, mostly from home, it’s been so quiet here at the house after the holidays. Dorothy and I both are feeling subdued, as if having a quiet break has taken us out of the rushed holiday mindset and dropped us into a cold, empty landscape where we thought we’d feel comforted and calmed. Instead it’s just calm with a hint of sad.

I’m still trying to figure out what’s going on with my health. It seems that I’ve done the best, most reliable treatments and am now entering the less certain phase of experimenting with other, possibly helpful drugs. It’s a sobering change of direction, one that I haven’t quite made peace with. I need more pathways along rivers and murmurations of starlings to move me along. Or maybe a quiet, cold red cliff in southern Utah where I can hear the sharp, shearing sound of a raven’s wing tips as it plunges through the air, dropping hundreds of feet down, playing in the empty air with its fellow raven.

Cold, wintry thoughts indeed.

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