Latest Results

Just got back from the oncologist. I got mixed/negative news. My PSA is up slightly from before. If it’s up three times in a row, it’s an indicator that the hormone treatment is failing. When that happens, on average, survival times are less than two years.

In the lead up to this meeting I was a mess. My scanxiety was thru the roof starting back around June 11, when I got the last injection. I had no appetite and  lost 5 pounds (not all bad). My energy levels were ridiculously low. The muscles in my back pulsed into and out of spasm. Going to sleep was hard to come by. I made frequent use of xanax and gin and tonics. The oncologist thinks a lot of this is due to the lupron and casodex and how they affect me. I’m off both of them for two weeks starting today and we revisit their use later. I meet with my GP later this week to try to get control of the anxiety and a better handle on what’s causing my lack of energy (he thinks it might be related to my heart attack).

Stay tuned.

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More Mixed News

A lot has happened in the last three months. I was anxiously awaiting the results of my last PSA test about 6 weeks ago. Prior to that, my PSA had dropped from 50 to 9 to 5. I was hoping for a 2 or maybe even less than 1. I got a 15. Triple my last score. My first thought was that the Lupron has failed, followed closely by absolute fear. My oncologist told me that this outcome didn’t necessarily mean the hormone treatment had failed, because I wasn’t on the hormone treatment as recommended. Up to now I’ve been taking Lupron every other month, due to the depressions it caused me. The last few months, as an experiment, I’ve taken Casodex, another hormone therapy drug, along with the Lupron. That introduced three side effects. The depressions nearly went away, my hot flashes grew much more frequent and severe, and I developed occasionally significant breast tenderness. The depression remediation was a big win, and with it we decided to switch me to a normal hormone therapy regimen – where I’m on it all the time. My oncologist suggested I start taking Black Cohosh herbs in a capsule for the hot flashes. They’re over the counter and even mention on the bottle that they help alleviate hot flashes. They’ve worked out very nicely for me. Instead of 2-4 severe hot flashes a day, I get a moderate hot flash every 3-4 days. On the breast tenderness front, we have to wait and see. He acknowledged this could turn into a serious problem, but so far it’s manageable.

As I was settling in to this new regime, on June 1 I participated in an Advanced Prostate Cancer Virtual Blogger Summit sponsored by Bayer HealthCare (they were even nice enough to provide a webcam for me). In general I learned that men do a poor job recognizing and communicating the signs and symptoms of advanced prostate cancer. For me personally, I realized I’ve been minimizing the problems I’m having with fatigue and anxiety. Over 85% of men with advanced prostate cancer have fatigue issues, so at least I’m in good company.

I sleep 10-12 hours a day and often need to spend a few minutes recovering from taking a shower. On the anxiety front, I routinely find the muscles in my legs, buttocks, and back totally tense up and are hard to move. Some of that may be all the chemicals I’m taking. It’s hard to figure out what’s causing what.

On June 11 I got my next month’s injection of Lupron, as per the typical regimen. What that really meant to me is that on July 14 I would find out if the Lupron has failed.

My anxiety has been through the roof since then. Many nights I’ve had to take anti-anxiety pills to get to sleep. The muscle “lockups” have been more frequent. I’ve had a few bouts of depression, but have been able to fight them off. I have a ready supply of anti-anxiety pills, but I try to use them only when really  needed. My docs tell me folks build a tolerance to them; and I don’t want to use that up unless it’s absolutely necessary. Last night I didn’t need them, and I’m going to try going to sleep without them tonight.

Despite all this bad news, my life isn’t that bad. Fifty percent or more of the time I feel pretty good. I’m hoping that once I get resolution on Lupron’s status the anxiety will go down, even if the result is it’s failed. Now if I can just get my legs to relax and go to sleep…

Was He Always Like This?

Sometimes I wonder what folks who follow this blog wonder about me. One question stands out in my mind, especially among the folks who have known me for decades. Did I always have this much trouble with depression and anxiety? Did I just do a great job of hiding it? The short answer is no.

I’ve had problems with depression and anxiety on a limited basis throughout my life, but for most of my life it wasn’t particularly serious. In fact, it wasn’t until I was in my mid-forties when I first started taking antidepressants and even then I was on and off them.

In 2008, right around the time I was first diagnosed with phase I cancer, my depressions got worse – no big surprise.

In late 2008/early 2009 I had brachytherapy and conformal external beam radiation to kill my prostate and my cancer. I was given an 80% chance of being cancer free at the five year mark, which would be early 2014. Cancer free doesn’t mean you’re cured, it just means there’s no detectable sign of the cancer at a given point in time. In other words you’re going to be tested for the rest of your life. For prostate cancer that meant PSA tests about every six months. I decided I was going to bull through it and everything would be OK. The depressions had little to do with the cancer as far as I was concerned.

Reality was telling a different story. Before long I was officially declared “treatment resistant”, meaning I didn’t respond well to single or multiple anti-depressant cocktails.

About a week before each test my anxiety would start gradually increasing to a crescendo before the test results came back. It became very clear that the disease, which I supposedly, probably defeated, was in fact seriously messing with my quality of life every six months. I thought about ending the testing and letting nature take its course. The doctors talked me out of it. I know now that was a mistake, I should have stopped getting tested, but I can’t change it at this point.

In late 2011 my PSA reading was slightly elevated, we did a bone scan, found some spots on my spine, and that graduated me to a phase IV cancer diagnosis. The only good news is we caught it super early. Even so there’s no hope for remission. All that can be done for prostate cancer is to slow it down. Depression and anxiety-wise I was very lucky that I was just about to start on a new anti-depressant cocktail that worked very well for a month or so. I definitely needed the help.

In January 2012, although I didn’t know it at the time, I was about to make the biggest mistake of my life. The doctors were split on whether I should take an aggressive route and irradiate the spots or follow the standard of care and wait for it to get worse. I was told that if I irradiated, the worst side effect would be mild fatigue. So I decided to go ahead with the radiation. They were terribly wrong, and as I mentioned in the last post, it wound up being a horrible error. If you look carefully at my posts over time, the worst depressions started after February.

And that’s the long answer.

Drug Dreams and Other Reactions

We’re back from our cruise to the Eastern Caribbean! The drugs did their best to trash the vacation for me, but on balance I had a good time. At many levels it was an uneven cruise. If you interested, my review can be found here.

Day before yesterday the drugs managed to give me another set of thrills with dreams. The first one started with my wife having cancer instead of me. We were all seated in a circle talking at a hospice like facility. We all knew she had only a few hours to live, but everyone was in very good spirits. Then they wheeled out a bed. Somehow we all knew this meant she had minutes to live. My wife jumped up and started running around the room screaming and crying. I was absolutely blown away since this was so unlike her. I started chasing her around the room, but could never quite catch her. I kept asking myself what I would say to her if I caught her. What do you say to someone who has only minutes to live? I couldn’t think of anything, no words at all came to mind. Then for the first, and I hope last, time in my life, I woke up crying and calling out.

After an hour or so I was asleep again. This time I was the one with cancer, and I was being wheeled into a room to start my first chemo session. My wife was there and the nurses with me seemed very considerate. I noticed the TV in the room was playing a medical soap opera. Some guy was laying face down and they were starting to inject a yellow chemo solution into his ankle (God only knows how the shrinks would interpret that). As soon as the solution started flowing, the guy let loose a blood curdling scream. I asked the nurses repeatedly to turn off the TV, but they just smiled pleasantly and continued what they were doing. Finally my wife jumped up and turned off set. I woke up then.

That was enough “sleep” for me for the night. I got up and promptly took my daily dose of the same drugs that caused the nightmares. How ironic!

It took most of the day for me to recover from dreams. My emotional reaction seemed to activate the casodex big time. I had a hot “flash” that lasted over 30 minutes and several hours of casodex depression.

In the early evening I started to feel a little better and decided to have something to drink, a gimlet my wife mixes up a special way. Within minutes I felt fine and a great evening.

Looking back over the last few months, I’m amazed at how often a simple, single serving of alcohol works better than all the antidepressants, etc. at improving my mood. No, it’s not because I’m an alcoholic and need it to function. I’ve talked with the docs about this and, quite frankly, they aren’t surprised at all. They’re quick to point out the downsides of consuming alcohol, but none of them discourage me. I’m sure that’s due in part to the two months I was off alcohol altogether and my depression never got better.

Does it always work for me? No, but it helps most of the time. I do draw a line of not having anything to drink before evening. I’m not sure why, really. It just seems like a good idea.

(Should you consider this? Not without talking it over with your docs. Alcohol interacts with tons of meds and you want to be sure you’re not putting yourself in a bad situation.)

That evening when I went to sleep, night before last, my dreams were odd, but not bad. I slept about eight hours. What was odd was that I was exhausted from the moment I got up. Within four hours I was back asleep – for twelve more hours. So yet again the drugs have screwed up my sleep schedule. This happens about every 3-4 days. The docs seem to think it’s the antidepressant cocktail possibly interacting with the casodex in some manner. Hopefully, this and the dreams will “resolve” before long.

Not So Fast

That word “appears” in the first sentence of my last post turns out to be pretty important.

Day before yesterday I was awake again for another 24 plus hours. Crashed in the afternoon and slept for a few hours. It wasn't until after 5:30 am that I was able to go back to sleep. Then between the phone and the, no kidding, Blue Angels practicing for their air show later today, only a few more hours of sleep were possible. At least I now know exactly what sound a jet engine makes when the afterburner kicks in. I mean in the second or two after the pilot engages the afterburner, but before it's fully kicked in. It is a pretty cool kind of whoosh. I also know that sonic booms will be part of the show. This has now officially gotten old. I'm exhausted and wired. I don't think it's just coming off the adderall anymore. The new cocktail is playing a role. Its effect continues to increase.

The new cocktail is yet another double edged sword. The good news is I am definitely feeling far less depressed. The bad news is I'm wired and the jaw clenching and nausea are back. Once I get back home, I'll start using the night guard again, along with Phenergan, to try to get control of this. If it weren't for the lift the cocktail is giving me, I'm sure I'd be very depressed. On balance I think I'm ahead of the game. It's so nice to not be depressed.

 

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