Archive for the ‘Xtandi’ 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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