Happy New Year, I guess

Happy New Year! It is January 4 and I’m still here to be writing blogs, so I guess that makes it a happy new year for me.

I didn’t plan to stop writing blog entries after the chemo; it just happened. After the second chemo, I was physically and emotionally exhausted. (Chemo does that.) The two chemo doses were quite effective against the cancer, but they were also very effective against me, so after the second, I decided not to take any more. Maybe I will write about that decision process some time.

I could afford to take some time to decide what to do, so I tried not to worry about it for a couple weeks. Of course, that is impossible, but I managed most of the time and it felt really good to not feel really bad.

In mid-October I started on Xtandi / enzalutamide. This is a different kind of anti-androgen drug. It blocks the androgen receptor, which stops the cancer cells from functioning. I’m still taking the Zoladex, which suppresses the testosterone production.  I can tell from the bone scan that some of the tumors were suppressed by the low testosterone, but others were not, and need some other treatment.

The Xtandi is working so far: by December, I had no symptoms of the cancer growing. I mostly now have side-effects from the treatment. There is a spot on my ribs where there is a tumor, and it get a little sore if I stress those bones too much, but it doesn’t have the continuous pain that the growing tumor caused. My PSA is down from ~10 to ~6 over the course of 2 months.

A major side-effect of Xtandi is fatigue. My muscles are tired all the time, and it spreads to a general whole-body tiredness. I haven’t written on the blog (though I started a couple times) because I just felt too worn out to do it.  Or a lot of other things that I would like to do.  All my little electronics projects have been on hold; I have not been active with amateur radio at all; etc.  I am quite capable of sleeping late and laying in bed reading, though. 🙂

I usually like to work during the holidays, when everybody else is on vacation. It makes the office a nice quiet environment with fewer interruptions. This year, I decided I would take the week between the holidays off, even though Christmas and New Year’s don’t really mean very much to me as holidays.

It has been a nice period of rest. I guess I’ll see how I feel when I go back to work.

Of other interest, I got into 3 research studies:

– a study of the gene for the androgen receptor; one version of this protein, AR-V7, does not have a ligand binding region. If you have that variant, you do not respond to enzalutamide. I don’t, but they will check that I still don’t at my next PSA test, and they will look to see if I have developed this variant when the enzalutamide stops working.

– a study of the gene SPOP

– a long-term survey of pain and other symptoms over time; I fill out this survey each day for 1 week out of 6. They are collecting data about actual patient experience to see how effective pain management is. I’m not having any significant pain right now, but I will someday and this study will give some insight into pain management.

The first two require collecting 3 large (10 cm?) tubes of blood each, though the SPOP study wants it at every PSA test and the AR study only wants it three times over the duration of my participation. In principle, these two gene studies might result in tests that are used to predict which treatments would be most effective.

None of these directly affect my treatment, but it is satisfying to know that I might contribute to knowledge about how to treat this disease, even if it can only come too late to help me.

That’s enough for now.  I’m not happy with the quality of my writing here, but that seems to be another symptom of the enzalutamide – I don’t write as smoothly and easily as I used to.  I’m going to call this good enough for a blog and leave it at that.  Otherwise, it could be another month until I finish writing this.


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3 Responses to Happy New Year, I guess

  1. ferthalangur says:

    Happy New Year Mark!

    I’m glad to see you writing here again. Of course, I’m also very happy that you are still here to write.

    We enjoyed seeing you both last week.

    I’ve been a little obsessed lately with my own mortality … not to compare your situation to mine, of course. I might be good for another twenty years … but there is always the possibility that my heart explodes in my sleep. It leaves me wondering “what’s important” … if anything. Keep going day-by-day as if I’ve got the twenty (and kick the question down the road as I have for the last twenty) or stop to figure it out. Anyway, I know you don’t write on demand, but if you were looking for a topic, I’d love to read about whether and how you’ve resolved this Calculus of Humanity for yourself.


    • ferthalangur says:

      Wow. I just realized that I said very similar things (about the CoH) in my previous comment. Loop!

  2. Carolyn S says:

    I’m so glad you are here. And speaking to Rob’s CoH, perhaps we can all discuss this. Mark received his diagnosis two years ago yesterday (on my birthday, as he reminds me). Here’s an idea to throw into the CoH equation — what’s important to me now is much, much different than what was important two years plus 2 days ago.

    It’s a rapidly sliding scale for me. I brushed my teeth today and took out the recycles. Oh, and I wrote this comment.

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