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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Chemo 2: The ReFuckUpening


I had my second dose of chemotherapy on 2014-08-29. The oncologist said that I had a particular bad reaction to the first dose, and one of the things you do for that is to reduce the the concentration of the chemotherapy drug. The other thing you do is take various prophylactic medicines to treat the side-effects of the treatment. Continue reading

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First Chemo


I had my first chemotherapy on July 17. I was planning to write about the bone and CT scans from the week before, treatment options, and another Pearls Before Swine cartoon, but the chemotherapy hit me so hard that I couldn’t. Therefore, here is the first 1.5 weeks of my first chemo in unanalyzed numbers:

  • 169 mg : docetaxel ( + ~700 ml IV solution )  [corrected 2014-11]
  • 90 minutes : duration of scheduled appointment for infusion
  • 3 hours : approximate actual duration
  • 1 day : felt good after the treatment (3 guys in support group thought it was probably the dexamethasone pre-med)
  • 2.5 days : felt so sick it was exhausting to get out of bed to go to the bathroom
  • 2 : opportunistic infections
  • 1 : emergency room visit for opportunistic infection
  • 500 : neutrophil count ( down from 55,000 )
  • 3 : drugs for infections
  • 1 : nurse expressing surprise at the phrase “awesome diarrhea”
  • 12 hours : sick leave the following week
  • 2 hours (so far) : playing merry-go-round on the phone trying to get the followup appointment the ER doctor said I should have in 2-4 days
  • 2 weeks : when my oncologist will be back in the office
  • 40-50 ml : amount of blood drawn in the ER
  • 4 pairs : gloves used by phlebotomist in following excellent sterile procedure
  • 1 : cleaning staff who came in to sweep the floor while the phlebotomist was following excellent sterile procedure
  • 4 : x-rays
  • 12 dollars : parking at the ER
  • 50 dollars : pack of 10 parking stickers for use at Kimmel
  • 0 : vomiting due to nausea – this number is pretty good.

Plus, I’m on vacation this week and feeling like crap.  I see a cost/benefit analysis in my near future.

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Vulcans Do Lie


I’ve always been interested in Vulcans from the original Star Trek. Mr Spock was my hero, because he was always the one who managed to stay focused on what he was trying to do. McCoy was prone to emotional outbursts, but was usually short on useful suggestions. Kirk could be rational, but was often he was presented as a ball of emotion, and that was supposed to be his strength.

Spock was also smart and knew a lot of stuff. Most people would say I felt a sort of “kinship” with Spock, not to mean that I was related, but I recognized he was like me. Being like Spock was also part of my being unpopular in school, but I would rather be me than one of those other losers any day.

The original Star Trek series establishes a story that Vulcans never lie, but examining the actual events shows that they do. I think that story itself is a lie, perpetuated (at least in part) by the Vulcans. If everybody thinks that Vulcans never lie, it gives them a tremendous advantage when lying suits them.

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Cancer Non-Update


The Zytiga does not appear to be working very effectively. My PSA has continued to rise in spite of the new treatment:

2014-03-18      7.8
2014-04-14      9.4
2014-05-12      10.6
2014-06-01      begin Zytiga
2014-06-23      21.5

If you plot those on a graph, it looks a lot like an exponential growth curve. I can just imagine somebody in a bad SF movie saying “IT’S GROWING EXPONENTIALLY!!!”

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2014-05-20: everything changes


TL;DR: I had bad news at the oncologist.  A rather simplistic estimate of survival is 1 year > 90%, 1.5 years > 80%, 2 years > 60%, all assuming my insurance covers the new treatment.  As before, there will likely be months of deteriorating health before I die.
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Pearls Before Swine – a reflection on life


My favorite comic strip that can actually get printed in a mainstream newspaper is Pearls Before Swine. http://www.gocomics.com/pearlsbeforeswine

A little while after I was diagnosed, my wife bought books of all the Pearls Before Swine cartoons. We both find this comic very funny and she thought they would provide a cheery bit of escapism.

They did. But Pearls has a dark side. It is a really funny dark side, but it is still pretty dark:

pbs-5years

I doubt that Stephan Pastis (author of Pearls) intended anything more than a bit of humour, but this is remarkably accurate. I am actually in that situation, and Pig’s answer is spot-on.

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The Heartbleed bug


I first heard about the “Heartbleed” bug from my IT group at work. As usual, the description you get from the media is so watered down as to be useless, but eventually I came across some reasonable explanations.

The simplest explanation is at xkcd.com/1354

My first thought on understanding the bug was “Really???” I’m kind of surprised that sort of mistake was created in the first place, and that it got through without anybody noticing it.
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Early clues that I might become an atheist


I did not choose to be an atheist. I looked at loads of religions, and I could not find any others that made sense.

It took a while, since my indoctrination into Christianity began when I was so young that I don’t even remember it. I grew up with parents that insisted on going to church every Sunday. I grew up with 100% of the people around me telling me about God and Jesus. Nobody even hinted that there could be any question. It was settled and certain knowledge.

But looking back, I see some early clues that I was heading that way. I was about 15 years old when I decided that I am an atheist, but here are a few suggestive vignettes that happened before about age 12.

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Metastatic Prostate Cancer Survival


Once I knew that my cancer was invariably fatal, the most pressing question was “How long?”.  I got some averages from the urologist, but those numbers were quite unsatisfying, so I researched a bit and created this graph. Continue reading

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