Archive for the ‘chemo’ Category

It’s been 10 months since I’ve written. My apologies. I think I’ve previously mentioned that brain metastasis can lead to a serious lack of thinking. This is not your average brain fog, it’s an inability to read, process information, or even follow a conversation unless it goes slow and easy. There’s no standard time frame for the onset of symptoms and no way to know if treatment will help or not.

So, in a nutshell, here’s what’s been happening.

  • August 2012: while on the Alpharadin clinical trial, I had symptoms that suggested metastasis around the skull or brain. I had tumors in my brain. So I did a course of 12 radiation treatments to the whole brain.
  • Fall 2012: worked with an endocrinologist, followed up with radiation oncologist, finished the Alpharadin clinical trial in late October. Started to lose cognitive sharpness.
  • November 2012 – January 2013: lived with various pain problems and fatigue. Started to feel regular, serious numbness and tingling in my left leg. An MRI at the end of January showed a tumor pressing agains the lumbar spine and sacrum, as well as some expansion of brain mets.
  • February 2013: did a round of 10 radiation treatments to the lower spine.
  • March 2013: did a gamma knife treatment to focus on brain mets.
  • April – June 2013: in addition to Xtandi and one Jevtana infusion, worked with a physical therapist and speech/cognitive therapist to deal with leg problems, balance, and cognitive issues.
  • Things were looking good there for a while. My walking and balance improved, the cognitive therapy was helping me learn how to do mental tasks without having a meltdown, and in general I was finding ways to keep working every day. I had my slow moments and occasional imbalance, but it looked like I would keep improving.

    Then very unexpectedly I woke up one day and my eyes wouldn’t focus. My right eye stayed shut, and when I could open it my two eyes were pointed in opposite directions.

    And so that, in retrospect, was it. No more driving, no more working. In July and August I did 10 more radiation treatments after an MRI showed a new tumor on the left of the brain. This month, September, I’ve been hoping for an improvement but I still can’t see straight and have balance problems. After some seriously low blood counts from so many different radiation treatments, I’m finally able to start back on Jevtana, but cautiously. And I’ve used 90 days of short term disability so we’re switching to long term disability, and I’m no longer employed.

    There just aren’t many more treatment options, yet. But one thing I’ve learned since February 2007 is that this is an amazing time of new drug development. So I’m staying focused on the present, and when something new becomes available I’ll just say “I’ll have one of those, please.”


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    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.

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