Feeds:
Posts
Comments

Archive for the ‘Taxotere’ Category

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.

Advertisements

Read Full Post »

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.

Read Full Post »

yeah, chemo is that bad

There’s a reason it’s been almost two months since my last blog post: docetaxel (aka Taxotere®). Since the middle of August, I’ve had one infusion every three weeks, with a helping of granisetron (anti-nausea), dexamethasone (steroid), and diphenhydramine (Benadryl, an antihistamine that puts me to sleep in 10 minutes or less). Every six weeks, we add Zometa to keep my bones from wasting away. And then I take a mystery pill for two out of every three weeks that’s part of the clinical trial I’m on. It might be lenalidomide, or it might be nothing.

I’ve got it relatively good with this treatment. Blood counts are nearly normal, no nausea, no liver or kidney issues, and minimal hand/foot neuropathy—hopefully because I bring ice from the 7-Eleven down the street and chill my hands and feet while trying to sleep off the Benadryl during the 60-minute docetaxel infusion. I say “hopefully” because I’d feel awkward if all that ice wasn’t doing something useful.

I almost tried to ice my head as well, which theoretically would have spared my hair follicles from the ravages of docetaxel. But I just couldn’t figure out how to balance a zip-lock plastic bag, or several bags, on my head at the same time that I pushed my toes into double-bagged melting ice and held another bag of ice so that all my fingers were chilled (not as easy as it sounds—the other folks around me must get tired of that slushy, crinkly sound as I keep adjusting the ice bag so all fingers are equally numb). The end result is that I have bad doll hair: my formerly silver, gray, and brown hair, which went white during the XL-184 treatment, is now thinned, fine, frizzy white stuff that looks like worn out plastic hair on a cheap doll. I keep it trimmed very short and keep a bunch of hats handy for when it starts looking creepy.

A brand new infusion room (photo borrowed from http://www.lavinarchitects.com)

I’m not looking for sympathy when I talk about chemo. I’ve had Zometa infusions for the last couple of years, so I’ve spent time in oncology infusion rooms and have seen what chemo can be like. Some chemo treatments have to be dripped slowly for several hours (as long as 6 or even 8 hours); others require a lot more pre-medication or come with two or three different bags of liquid that have to be infused one after another. Most infusions are just clear liquids, but occasionally you see a yellow one, or a deep rusty red color. Last time I was there a woman was being infused with a creepy black liquid (it might have been an iron supplement). It’s so difficult to see frail people laying back in those big recliner chairs, trying to rest or read while they wait for hours as the solutions drip into their veins. For me, this scene is the harshest reality of cancer treatment, short of being with people in a hospital or hospice setting.

I went to a chemo class before beginning this treatment, and even after four and a half years of almost everything possible (surgery, radiation, hormone therapy, targeted drug therapy, and the crazy pheresis/infusion cycle of Provenge), it was intimidating to be told how chemo infusions work and what to expect as treatment progresses. These classes are typically taught by infusion room nurses, who are businesslike and somewhat reassuring. The night I went, there were about a dozen people in the room, including supportive family members. Several of the patients had a deer-in-the-headlights look, and many were in tears by the end of the hour. It’s just not easy to see your life change so fundamentally with this type of treatment.

Honestly, I have it relatively easy. But what I’m finding out is that “easy” is always relative. I used to wonder if other chemo patients were exaggerating or just overly sensitive. Now I’m realizing that no matter what your results, there’s an emotional reaction to whatever side effects you get. On day 15 of my first infusion cycle, I was sitting at my desk at work and idly ran my fingers through my hair. I held a dozen strands in my fingers. It was a confusing moment: I had no idea whether I’d lose all my hair or not, or how quickly it would happen, but I had a disturbing vision of leaving work that day with piles of hair on the floor. I carefully tried not to scratch my scalp or even touch my hair that day, and realized by the end of the day that it wasn’t going to all fall out at once. The next evening my daughter took some clippers to my head after shooting photos of me and Dorothy at a nearby park.

One of our last-day-with-hair photos. Thanks, Rachel!

Hair is not a high priority for me, and all along I told myself it would be no big deal to lose it. I was wrong. There’s something disturbing about pulling out your own hair and knowing it won’t grow back for now. It’s just one more thing you can’t control as you live with cancer treatment. Now that I’m more than three months into the chemo, my beard is only at about 20 percent of normal, so I finally shaved all but my thinned moustache. Another loss, and again, it’s not the loss so much as the loss of choice.

Chemo definitely has a bad name, one that feels harsh and unpleasant. That’s the traditional reaction, and it’s based on the harsh experiments and lack of supportive medication in the early days of chemotherapies. Now, many chemo treatments can be well tolerated: there are anti-nausea and steroid drugs that reduce the shock to your system, and in almost all cases it’s an outpatient process. Patients still experience immune system issues, they lose their hair, and may go weeks or months with no appetite, mouth sores, feet and hands that are tender, numb, or painful, and so on.

Docetaxel is derived from the bark of the Pacific Yew tree, which is a poison used at least since the time of the Roman empire. As with many chemo treatments, someone figured out that the effects of a certain poisonous substance, if tempered, could kill certain cells without killing the patient. One of the very first attempts at a chemo treatment involved derivatives of the mustard gas that was used to kill or maim so many soldiers in World War I. I suppose I should be grateful that I’m “only” being given a mild form of yew bark extract.

Anyway, even though I’m doing all right for now, chemo is not easy. It’s a tough challenge because results always vary. My friend from a “living well with cancer” group, John, who had lung cancer, went through about six months of chemo and would insist through it all that he felt fine. He lost some hair (but didn’t have much to begin with), was a little more tired than usual (he did take some time off work), but he kept telling us that he really felt fine. Another dear friend that I’d met in the group a couple years earlier, Vera, suffered for months with mouth sores, fatigue, and slowed down cognitive reactions. During her treatment, and even for a few months after, she spoke slowly, searching for words, and continually swallowed and licked her lips because of her dry mouth and sores. She had about a year of remission, but when her cancer returned, she chose not to go a second round with chemo. We all saw how overwhelming it was for her, and had several discussions in our group about how you balance quality of life with extending life through treatment. What’s worse: dying sooner, or dying later with daily discomfort and confusion?

When the fatigue hits, it takes out your thinking as well as physical energy. Chemo assaults the immune system, which drains you even further. Another group friend, Barb, described her reaction to chemo as a “lost weekend”:  she could plan on just staying home Friday on weeks that she had an infusion, and said that she’d just stay in bed and “astral project” for three days. I used to wonder if she was exaggerating, but I don’t any more. I typically have my infusions on Tuesdays, and I know that at some point on Thursday afternoon, I’ll hit a soft wall. Something shifts, and I start feeling a serious lack of interest in doing anything. Friday morning I’ll wake up and wish that I could stay in bed, but I go to work and just make sure to take it easy. Saturday and Sunday, I do stay in bed most of the day, and I keep wishing I could learn to astral project because my mind and body are just gone. I can’t read, don’t want to listen to music, and can hardly carry on a conversation. I can’t even make mental plans for a couple of days: it is somehow too taxing to think ahead or even think back too far. If someone asks my opinion about something, I just smile and say, “Ask me in a few days.” By Monday I’m picking up a little energy, but I find that my mental energy is usually ahead of my physical energy, which leads to the conversation that Dorothy says we’ve had five times now: I say, “Wow, I thought I was going to [do something… usually something minor like help clean up the dishes or go for a walk], but I guess I’m just more tired than I thought,” and she says, “Remember, this happened last time?” But of course I don’t remember. So I just park on the couch after work and stop trying to do anything.

Chemo seems to typify that wall between cancer patients and the people who want to help them. For several years I’ve heard chemo stories and silently made judgments about whether or not those people were exaggerating or really sensitive or just weak. Now I look at the reactions of other people when I try to explain to them what this treatment is like, and I see the same skeptical reaction behind their sympathy. When I say, “sorry but this week I’m just not up to it” I can see that polite tight-lipped reaction that says, “Yeah, I’ll bet you’re just making an excuse.” I suppose that for all those times in the past when I did use a lame excuse to get out of something, this is my payback. But the unfortunate thing is that it’s real. I really do crawl into a cocoon for a few days and do nothing. For several days after that, I’m up and around but I don’t have the mental or physical energy for anything but the most simple tasks. And after five rounds of chemo, my mental alertness is dropping off for almost the full 21 days of the cycle. (This blog post has taken seven drafts, over a period of ten days, and I’m still not sure that it’s clear or well-phrased. Oh well.)

OK. Maybe just a little sympathy from you, dear reader. But just be assured that I’m not playing this cancer card lightly. Chemo really does mess with your energy, your thinking, and your ability to care about anything but making it until the next nap, or until bedtime.

Read Full Post »

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.

Read Full Post »