Archive for the ‘brain mets’ 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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    There’s a terrible uncertainty in cancer diagnosis and treatment. No matter how much information you appear to have, any honest oncologist will tell you that it’s largely guesswork when it comes to figuring out what is going on at any given time. Some conclusions are fairly straightforward, others are not.

    My brain MRIs are a case in point. Family and friends want to know what the results are, and of course they want to hear good news. I recently had a three-month follow-up MRI and a short visit with my radiation oncologist. Dorothy and I came away a bit less than certain of the outcome, although we think it’s good news.


    Part of the problem is that we didn’t have clear expectations for possible outcomes to begin with. Does whole-brain radiation get rid of tumors? Does it only stop their activity? How exactly does this thing work? For the last three months we had a sort of expectation that the tumors would go away, but the problem with that idea is that we hadn’t clarified it with any of our oncologists, so  it was a little disconcerting to hear that based on the new MRI, it looks like the large, centrally located tumor was reduced in volume by at least 50% (good news, right?). Dr C was a bit less clear about the other tumors: the radiologist who read the MRI reported that these were essentially the same size, but Dr C felt like they had also been reduced in size. This is where opinion, not science, comes into play. The radiologist, who I’ve never met, was conservative in calling it in my favor. Dr C was more generous in his evaluation.

    As Dorothy pointed out, how a doctor delivers news like this can have a big influence on how the news is interpreted. Dr C is a really laid back guy, so he didn’t get very enthusiastic as he told us about the MRI. His message was, essentially, “This looks good to me. I think you’re OK.” It would have helped if he had started with, “Great news: these tumors are just where we would like them to be.” Instead he did what doctors often do, told us that it was his opinion but didn’t make any clear statements (rather anti-Hollywood of him). So we walked out of there feeling OK but not certain.

    I’m the kind of person that needs to understand the hows and whys, so I was happy to have a third opinion from Dr V a few days later. His delivery was clear (“Yes, it looks good!”) and he described what happens with brain mets when you radiate them. They don’t go away, but what’s left of them is still visible on the MRI. And unless you were to drill in and biopsy the tumors, you really can’t tell from an MRI what the actual state of those cells is. The radiologists and oncologists make their best guesses based on what they can see and what kind of side effects I’m reporting. And there are so many added things to consider: did the brain itself suffer any damage from the tumors before they were radiated? Did the radiation damage brain tissue? There are all kinds of questions that are difficult to answer.

    So I’m probably in good shape, all things considered. And those things to consider are:

    • The Alpharadin, now that I’m done with six treatments, has probably left me anemic and thus fatigued. It has definitely reduced my bone pain to something like ZERO compared to where I was six months ago.
    • The whole-brain radiation has taken my hair (but not beard/moustache), has contributed to the fatigue, and probably is messing with my cognitive abilities (hard to sort that out given the anemia thing). It has apparently stopped any progression of brain mets, which is a GOOD thing.
    • My thyroid numbers have normalized again after two months of taking levothyroxine. One might think that would help with mood or energy, but it hasn’t. It has, however, ruled out thyroid function as a contributing factor to all this other stuff. Now we just assume that pituitary or adrenal function are still issues. Maybe.
    • Four doctors all have different opinions about how to continue with either prednisone or dexamethasone, but they all agree that I should keep taking a minimal dose for now.
    • I’ve been taking Xtandi (a.k.a. Medivation MDV-3100) for a month. As I talked with Dr. V, we saw that last month’s PSA had risen back to about 180, which is where it’s been for four or five months (except for a drop to 129 in September). “We don’t pay much attention to PSA—it’s not a reliable indicator” said the doc. OK, I said, forget about PSA. But as I was scheduling my next visit, the PSA results came through: 54. “Looks like the Xtandi is working!” said the doctor. He was happy, I was happy, and for a moment we threw out the part about ignoring PSA. Let’s hope that number stays steady for a while. I haven’t seen that number since the end of my first clinical trial two years ago.

    I don’t think I’ve had to sort out so many things at once in my six years of cancer. And it’s another example of how random treatment results can be for different men. I met an man from New Mexico who was on the Alpharadin trial, on the same treatment schedule as me. Over the five months that we crossed paths (I didn’t see him my final visit), we found that my pain and CTC (circulating tumor cell) count both zeroed out, while his CTC count shot up. How does that work? I also heard from my friend Elroy, who quit the Alpharadin after five treatments because of anemia. In his case, it was too difficult to continue with it.

    Xtandi is also unpredictable. Some men are seeing good results. Others, not much at all. There’s no saying how long it will be effective for me, assuming that my drop in PSA was not a fluke or a lab error.

    Oncology is not for anyone who needs certainty: it’s an inexact science. So the challenge is to take whatever indications you have that things are going well, and not be overwhelmed if your next set of lab work goes in completely different directions.

    Which leaves me… still on the couch when I come home from work, and I use the weekends to sleep as much as possible and catch up from the fatigue that’s been building through the week. Who’d have thought that I would complain about spending hours on end laying on the couch? With our mild winter weather (one substantial snowstorm several weeks ago, and today it’s very cold and snowing a little), I really can’t complain. But I will. Sorry.

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    Now that I’m about two weeks post-radiation treatment, it’s time to start balancing issues of fatigue with all the good things in life.

    “Tired” is a little word that people tend not hear with any interest. Dorothy has been running interference for me in the last week or two, and she kindly tells people that I’m really tired and just not up to visitors or even extended phone calls at times, much less going to large group activities. So just as human nature can be, people hear “Dan’s tired” and they apparently then subconsciously say to themselves, “well, I’m tired too—so what?”

    I worry that it’s coming across as an excuse not to interact with people: No, I am not Blanche Dubois having a spell. I am FATIGUED in the clinical sense.

    Maybe Dorothy and I should start announcing my fatigue with a flourish to emphasize that I’m not just “tired”: think Michael Cain’s Alfred character in the Batman trilogy, firmly announcing “Mr Maryon is faTIGued at the moment and cannot be disturbed.”

    To add to the confusion, I am still alternating periods of busy thinking and a certain level of physical energy with the flat-on-my-back-eyes-closed fatigue. Dexamethasone is a confusing master in this arena. I take it first thing in the morning. It replaces the adrenal-produced hormone cortisol, which naturally increases first thing in the morning to wake you up and then fades off by the evening so you can go to sleep. But dexamethasone doesn’t exactly follow the natural flow of cortisol during the day, because my sleep at night occurs in two-hour segments that usually require some kind of pharmaceutical intervention to get me back to sleep. Five hours a night is about average, and it’s just not enough.

    My average day in the last couple of weeks cycles up and down in random and weird ways. I try to anticipate when I’ve pushed myself a bit too much, and then find a quiet place to close my eyes, even for 10 minutes. Usually on weekends, I have times when I get over-enthused about a project or activity and then pay for it with an hour-long nap.

    When that happens, I just have to announce that I’m down for a while. Can’t predict it, won’t apologize for it. Yes, it makes for disappointment all around, but this is not the kind of “tired” that you can will your way out of. It’s a combination of bone-deep exhaustion, muscles like over-cooked pasta, fuzzy thinking, and general listlessness. You have to experience it to understand.

    My best comparison is to when I had mono at the age of 33. And I hope Dorothy doesn’t mind if I bring up one of our better moments as a couple. It was the middle of summer, I had flu symptoms that weren’t going away, but the last thing I would have guessed was mono. I finally saw my doctor, who checked me over and ordered several tests. While waiting for the diagnosis, I was home on a Saturday morning, just stuck in my bed, and Dorothy scolded me into getting outside to mow the lawn. She basically said, you’ve just got a cold, don’t be lazy, get out and do something! So I dragged myself outside and pushed that lawn mower around in a daze. A few days later the doctor told me it was mono, with signs that my liver had been exposed to some kind of hepatitis at some point. I was ready to exact my revenge for that lawn-mowing incident. But I was too tired to care. And Dorothy felt really, really bad about the whole thing.

    As much as I would like to be able to give advance schedules for when I’m available and perked up, I can’t. I have to play with what energy levels I have hour by hour. I save up everything I can for work hours so I can keep a regular schedule, with occasional lunch-break trips to a quiet spot where I can close my eyes and find a short moment where something in my brain resets and I feel back on track. I schedule weekend and evening events cautiously, trying to anticipate getting a little sleep beforehand. It usually works.

    But really, really, there’s no predicting and it’s NOTHING PERSONAL. Dorothy is dealing with this unpredictability quite gracefully. We try to plan what we can, but she understands when I have to say, “Sorry, I have to go lie down for a while.”

    The best option would be to just check out completely for a while. Wish I could, and maybe I will have to if things get any worse. But in the meantime, folks, I’m just doing my best with my faTIGue.

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    Having finished my series of whole-brain radiation treatments, we are now waiting. We, meaning me and Dorothy and our children, and whoever else is troubled by the whole thing. Most treatment modalities come with waiting, but radiation waiting is the most elusive and maddening.

    The simplified version of what Dr. C told us about the process is two and a half weeks of treatment (few side effects) followed a week or two later by a wall of fatigue (maybe) that could last a month or two (who knows?) and then gradually slide into the possibility of general, long-term memory or cognitive problems (probability unknown). Hair will fall about two weeks after beginning treatment (check) and there’s possible skin dryness and burning on the scalp (eh, not so much).

    Why am I not bound up in anxiety? Dexamethasone helps. As previously described, it’s my new happy drug that’s sent me into an energetic, what-me-worry mindset. Also, Dr. V has been a solid support. He phoned me the day after I got the MRI results and started with “I just want to scream!” In that call and in our next in-person visit, he was so straightforward and supportive, walking me past the panic into “this is just a treatment, people do it all the time, it’s not game over.” His calm response was very influential on my reactions.

    The reality is, radiation as a treatment is a slow roll of the dice. Radiation breaks DNA in fast-growing cells, which prevents them from duplicating themselves and thus eventually dying off without creating new tumor cells. This takes time, because the cells even after being radiated can live for a while. They don’t all die off at once, so there’s no moment at which they suddenly fade away. And, it’s not necessarily a given that all cells will be damaged enough to not continue dividing.

    It’s a gradual process that isn’t easy to track. With prostate cancer cells, PSA is the generally used method to track growth or cell death. The confusing thing is that healthy cells produce PSA, dying cells might produce even more PSA (not sure where I heard that), and then the PSA itself can linger in the blood for a time. That’s a lot of variables, so the numbers just don’t tell much of a story. We hope that a new circulating tumor cell test (CTC) may provide a better indicator of progress. This test actually counts the number of prostate cancer cells found in a blood sample (I’m curious about how exactly they filter out the cells in the test), which can indicate how actively the little boogers are floating around looking for a new nesting location.

    For now, I’ve still got approximately the same physical complaints that got me into that MRI tube, plus more fatigue. So we wait for that to change, but it’s just not useful to run another scan yet. In a month or so, maybe. In the meantime, lots of deep breathing and mindfulness and rest are what keep me sane.

    For the curious, here’s what the radiation treatment looks like: I would go in to a room with a big external beam machine, lay down on a little table thing, and the techs would hold my head in place with a plastic mask.

    They’d then exit, and for about two minutes the machine would rotate around my head, buzzing and hitting me with what looked like blue light through my closed eyes. Not very complicated from my perspective.

    And the cool thing is I now have a handy Halloween costume: a creepy plastic mask.

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    It’s been only 16 days since Dorothy and I were told about my brain metastases. It would be somewhat true to say that those 16 days have been like a mini-lifetime. But it is also true that those days have collapsed into one long present moment, from which I would like to separate myself but can’t.

    The first thing Dr. S (my Salt Lake oncologist) did, after breaking the news, was call in a prescription of dexamethasone for me to start immediately. With the possibility of tumors pressing against the brain and a hint that some fluid was building up, the dex helps reduce inflammation and edema, and so it was important to get going with it.

    Being a corticosteroid drug like prednisone, I figured I was in for a wild ride with the dex. Big understatement. I was started on a “standard” dose of 8 mg twice a day, which as it turns out is approximately equivalent to 10 times the amount of prednisone I was currently on. My weekend before starting radiation therapy was a blur. That drug wired my thinking patterns to overdrive and alternately kept me buzzed and exhausted. I’d wake in the middle of the night and not be able to sleep, laying wide-eyed in bed for hours on end.

    I dropped the dose after the weekend and have been trying to find a manageable dosage that lets me sleep (with a little help from a sleep drug, after my mid-night wakeup). But my mental and physical cycle over a full day continues to be goofy: take the dex first thing in the morning, have energy and mental buzz into the afternoon, take a little time to crash and hopefully nap in late afternoon, then have a somewhat normal evening with some of the mental buzz again. Fall asleep, wake up 4-6 hours later, take a little Ambien, hopefully get 2 more hours sleep. And repeat.

    The part that is baffling to me is how dexamethasone messes wth cognition and memory, and with basic personality traits. There are some crazy things going on with brain chemistry that I wish I understood. On the higher dose, I found myself losing any sense of the immediate past. I’d float through the day pointed firmly in a forward direction, hardly remembering what just happened or what I’d done in the last while. Oddly, this has given me a taste of what it might be like to be an extravert. I’m off the charts introverted in most ways (if you go by the temperament descriptions in tests like the Myers-Briggs Type Indicator) and now I wonder how much of that is connected to thinking about past events, such as reminding myself what I did or said in a situation and mulling it over.

    Even now, on a more manageable dose, I do not give consideration to the past. I remain pointed forward, focused on what is happening right now. The past just flows on behind me like the proverbial river of consciousness, and I do not look over my shoulder. Really, after 16 days, I’ve come to this point? Like I said, I don’t know if this is a mini-lifetime or a big open space in the eternal Present.

    One benefit, if you want to call it that, is that these couple of weeks have very unexpectedly become productive and focused. At work, I just get stuff done and then wish I had more to do. At home, I’ve been manic about finishing projects, stuff I’ve put off literally for years in some cases. If I see something that needs doing, I just step in and do it until it’s done. No other plans, no time for decision-making–it’s just there to be done, and I do it.

    And all kinds of things are falling into place in the most unlikely ways. For months Dorothy and I have been talking about whether to get the house in shape and put it on the market. Instead, we just did a lightning-fast refinance that will save us a bunch of money every month. That all happened in about 10 days. Just before that, we printed out the will and living will documents I started two years ago, and had them notarized. At the same time, we decided to get a new car I’ve been thinking about since early summer. With the mortgage savings I can make the car payments every month. We are still painting and repairing the house, too, with help from Rachel and Jase. It looks beautiful with a fresh coat of warm tan paint on the main floor.

    Yeah, I know, this sounds like the drug has pushed me into mania. But so many other things are happening like a row of dominoes. We’ve wanted to finish our back yard landscaping but have been stuck because the empty lots next door have never been developed. Yesterday, a backhoe showed up and the first of two foundation holes was dug, after seven years’ waiting. And as I was getting ready for the car deal, I had planned to trade in my old car. Not necessary: Kate and Tim’s old Saturn lost its clutch ten days ago; they have no resources to buy a new/used car, so, my old car is now theirs.

    How little we really understand about brain chemistry: I think I’m experiencing things for the first time in my life that are just normal to other people. I do worry about crossing the line from euphoria into mania and then psychosis (well, Wikipedia says all of those are potential side effects of dexamethasone…). But I think Dorothy likes the modified me. I’m cleaning out all kinds of junk from our basement storage and getting all kinds of things organized.

    As we talked about today’s victory (we gave away a headboard and bed frame we’ve been storing for, oh, a decade) we got into our game of morbid chicken. I kidded Dorothy that it looks like I’m on a crash course of putting all my affairs in order, just in case… which would not be unusual given that I have tumors in the brain. But I’ll be really, really bugged if that’s the case. The reason we joke about it is that Dr. V, when he told us to get an MRI, just casually mentioned that with brain tumors (as unlikely as they are for prostate cancer), if you don’t get them treated, well, you could just end up in a coma or something. Or Something. Yes, our imaginations went wild with that one.

    Oh, so about the game of morbid chicken: it’s where we take turns talking about our worst fears related to cancer and dying. You get a point for making the other person cry, two points if you both cry, and three if you both laugh and cry. Then the bell sounds and it’s time for the next round in the game. That’s how we deal with this craziness. I got a point today when I said that if I were to suddenly lapse into a coma, Dorothy may absolutely not tell people that I knew the end was coming and had to work everything out. It’s just not true. I don’t have any inclination that this is more than another sharp twist in the treatment road. People get whole brain radiation all the time and it works well for many of them. People do survive brain mets. Some people don’t. Brain mets are not a good thing to have, but if we get stuck in disaster thinking about them, we lose perspective. And right now, perspective is what keeps me centered. I think it’s safe to say that I’m focused on the eternal present moment, with a drug that’s messing with my mind just enough to enable that little taste of enlightened living.

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    Five years after I thought I was done with external beam radiation, I found myself in the waiting room of the IMC radiation oncology center this morning. It’s a comfortable place, with frosted windows and blonde wood paneling, jigsaw puzzles scattered out on tables, and magazines, brochures, and “Look Good Feel Better” literature for women losing hair.

    My old friends, the radiation tech crew, are still there. We bonded over 38 pelvic radiation treatments back in July-September of 2007, and now we have a shorter series of 12 whole-brain radiation treatments in the next couple of weeks.

    This is, to say the least, an unexpected development.

    Over the last two months I’ve had moments of dizzyness and blurred/crossed vision when standing up. Because we knew that I had tumors spreading up my spine and at the base of my skull, both my oncologists agreed that this looked like tumors spreading along the outside base of the skull, where they can press against nerves that end up in the ocular center of the brain. It started somewhat innocuously, and I didn’t think much of it. But through July the experience became more noticeable and episodes lasted longer.

    So after my last trip to Vegas, we agreed that I needed an MRI to find out just what was going on. I made an appointment for that Wednesday and a follow-up with Dr. S to discuss the results two days later. Of course, the day after the MRI I came home to a phone message: “Dan, I really need to talk to you this evening.” Not the most comforting words to get on a phone message from your oncologist.

    Instead of a clinic visit, I had an appointment with the radiation oncologist at IMC Friday. The MRIs showed three substantial tumors in the brain, with another smaller start-up about a quarter-inch wide.


    After we looked at the MRI slices on a screen with our new oncologist, Dorothy and I snapped a few photos off the screen just for a special souvenir. What else can you do when you’ve just been given such news? On the left below, between the eyes, an inch-sized tumor in the middle of everything, lurking above the pituitary gland. On the right, two tumors spreading out along the top left of the skull. I tried to find a glimpse of that third little starter, but don’t have a very clear image of it. It’s on the top right side of the skull.

    Creepy, huh?

    So I’m back in the external beam radiation room for a couple of weeks. It’ll take another few weeks after that to wait for results since radiation tends to act cumulatively and slowly. Maybe a little hair loss and skin burns along the way. And we will still keep up with the radium-223 trial to keep all the other bone mets at bay.

    Really, what can I say except “another bump in the road”?

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