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…

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18.1

I met with my oncologist on Friday the 13th after having blood work done this past Wednesday. My PSA was at 18.1, which is below 20, roughly my previous PSA. I was concerned that the Lupron might have failed and my PSA would be much higher, so we were pleasantly surprised with the results. On average, Lupron fails after about 2 years of use. I’m at about 2.5 years now. On the plus side, I’ve heard of one man where Lupron didn’t fail for 8 years. I guess that’s good news, but it’s hard for me to get excited about 5.5 more years of dealing with the side effects of Lupron. It’s not that I’m ungrateful that the drug was developed, I just don’t know if I can tolerate the side effects for that long.

I asked the oncologist what the effect of going off Lupron would be relative to my life expectancy. He was hesitant to provide a number, but finally did. His estimate was that Lupron could extend my life up to two years. That’s a big enough number that I have to find some way to cope with Lupron.

This last cycle with Lupron was particularly difficult. Instead of the first week being symptom free, the hot flashes started the day after the shot was administered and depression set in the day after that. Fortunately the depression was mild, but unwelcome none the less.  As expected as the weeks went forward, the depressions became more intense. I had a TMS treatment during week four to help head off the depressions in weeks five and six, which historically have been the worst. The treatment was a failure for week five, but did help on week six. Usually weeks seven and eight are pretty benign, but that wasn’t the case this time. The depressions and hot flashes continued, albeit at a lower level.

I was scheduled to get another Lupron shot on Friday, but I think the oncologist took pity on me and delayed the shot for two weeks. I didn’t object. He shifted me from one month on and one month off to one month on and a month and a half off. I didn’t object.

There’s a “new” drug on the horizon, Xtandi, that will hopefully be approved before Lupron fails for me. It blocks testosterone, instead of reducing it. I’m hopeful that that may mean no depressions, but it’s not approved yet and it has a laundry list of other negative side effects. Still, I’ll watch it closely.

An Update

It’s been nearly six weeks since my last post. My apologies to those who wondered what happened to me. There were many times I wanted to post, but the content was so bleak and discouraging. I think I’m more driven to write when I feel my worst. Maybe it’s cathartic. I guess it is at some level. But I don’t want the folks who read this blog to get an inaccurate image. Getting the right balance between the positive and negative aspects of my posts is one of the hardest things for me to do. So I punted and didn’t post, rather than trying to figure out how to present the kind of balance that I think is accurate.

Let me bring you up to date, at least for the last month. I got my last Lupron shot about 4 weeks ago. I had no reason to believe there would be anything special about this shot, but there was. Typically, the first week after the shot the effects are very mild. That wasn’t the case this time. Hot flashes and deep depressions started almost immediately. I talked with the doc about it and he suspects the injection was very close to a vein, leading to Lupron being absorbed much faster into my system. We had a cruise coming up in a week so I decided to get a booster TMS treatment hoping it would reduce the depressions.

We left on the cruise from Ft. Lauderdale, Florida a few days later. By that time the TMS booster was starting to take effect and I was feeling pretty good. The ship was headed to the Mediterranean, and it took us about a week to cross the Atlantic. During this time my depression was well under control and I had a good time. The depressions came back after we finished crossing the Atlantic. Over the next week the ship visited six ports and I was lucky to feel well enough to see four of them. Gibraltar was one of the best ports and isn’t a common stop. They have very cute free ranging apes on the Rock of Gibraltar and the only runway in the world that has a road running through the middle of it. (They have gates to stop traffic when a plane is landing or taking off.) On balance it was a good time, not too terribly marred by depression.

This past week has been a daily fight with depression, but at least I won sometimes. I got another booster TMS session in anticipation of weeks 5 and 6 after the shot. They’re usually the worst and it’s now the start of week 5. The depressions can be crippling. Those times rarely last more than a few hours, but they are the worst times of my life – I believe that things will never get better, only worse, even though intellectually I know it’s not true.

Swirling around all this is the rest of my life. It’s filled with wonderful things: a loving and very supportive wife, great friends, a great medical team, good medical insurance, a comfortable retirement with lots of travel, and the list goes on. During the bad times, it’s often hard for me to connect with how lucky I am. Learning to do this is something I work on a lot. I’m getting better, but it’s oh so slow. Oddly enough, my heart attack actually helped. I’m not as preoccupied with my cancer, which is great. Nothing comes for free, though. Every time I get any kind of chest pain I freak out. On balance, I’m ahead of the game.

“There are good days and there are bad days.” It’s a phrase folks with cancer often say. This saying really isn’t very accurate for me. A more accurate description is “there are good hours and there are bad hours”. Lupron jacks around with my hormones, so my feelings can shift from the deepest depression to feeling great in relatively short order. I suspect that women who have cancers involving hormones suffer the same fate. As long as I’m on Lupron, I have to accept I don’t have any substantive control of my emotions.

I often wonder if I should stay on Lupron. There’s no question I’d feel better, if I went off it There’s also no question I’d die sooner. How much sooner no one can tell me – days, weeks, months, or years. For now I’m deciding to stay on it. If the length or severity of the depressions worsen, or when my cancer metastasizes to a vital organ, I may change my mind. Once a vital organ is involved the clock will start ticking much faster, and I may want my remaining time to be as free of Lupron’s interference as possible.

Down then Up

A common expression from those with cancer is “there are good days, and there are bad days”.  I’m not sure where this started, but it doesn’t fit my experience at all. I’d say “there are good hours and there are bad hours”.

Take today for example. I woke up to a panic attack. After several hours I managed to ‘control’ it into a depression. By dinner time I felt pretty good. By the end of dinner I felt great. Just a few minutes ago my bulldog and I were having a fine time drinking Grand Mariner (he loves it, but I only give him a couple drops).

It often seems to me that there’s a timer somewhere that controls how many hours a day I can feel good (or must feel bad, who knows).

This cancer stuff is quite inscrutable.

The New Normal

It’s been nearly two months since my last post, altogether too long. Oddly enough, many of the cancer blogs I follow are in the same situation. Seems many of us these last few weeks haven’t been writing.

For me it’s been a collection of things, getting used to a new normal, traveling, and then getting a pretty severe case of bronchitis.

My new normal is something like this, get a Lupron shot, have mild effects (hot flashes, chills) for a couple weeks, follow that with a couple weeks where mild depression and nausea is added, then cap it off with a couple weeks of significant depression in the early part of the day, transforming to anxiety later in the day and more nausea. I then have a few weeks of respite before the next shot.

Fortunately, my GP and oncologist both suggested I take Prilosec as a prophylactic for the nausea and it’s worked great. Xanax has also been a big help with the afternoon anxiety attacks. By the evening I’m usually fine. I probably should give some credit to the Gin and Tonics for that!

I hesitated to call this post the new normal, because I have no idea how long it will stay this way. Lupron fails on average about two years after it’s started. I’m getting dangerously close to the two year mark. At this point I’m just choosing to believe the Lupron will work significantly longer for me than it usually does. There’s no statistical evidence to indicate I can’t be one of the exceptions, so what the Hell. When it does fail, it’s off to the next step.

In the meantime my life has been pretty full. We took about a 2 week cruise of the British Isles and had a great time. Photos will be posted eventually on my sister blog, Jim’s Pic of the Day. In the meantime there a are posts from various zoos, etc. that I’ve visited over the years. Unfortunately on the last day of the cruise I developed a nasty case of bronchitis. It suspended updates for “pick of the day” and this blog temporarily, but I’m over it now.