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.

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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.

Ahhh, Lupron

It’s now been two weeks since my last Lupron shot. The first week, as usual, was uneventful. This second week has been trying. There’s a pattern that’s developed. When I wake up, a panic attack starts almost immediately. I have no idea what I’m panicking about, I just have the panic. In time it goes away, to be replaced by a deep depression. Again there appears to be no real reason behind the depression. By 6 or 7 at night it all goes away and I feel fine.

For example, today I was praying for a brain aneurism or fatal heart attack in the afternoon, but by 7 in the evening I was feeling great. My wife and I went on to have an excellent dinner with friends at 8. As I write this, I’m feeling fine. Almost certainly, I’ll repeat this pattern tomorrow.

My biggest concern is this is only the second week. Historically, the depressions are much worse during the 5th and 6th weeks after the shot. I’m going to get a “tune-up” TMS treatment next week in hopes of short circuiting more severe depressions. We’ll see what happens…

The Next Day

I thought it might be helpful to others in similar situations for me to continue with how I’m dealing with the aftermath of my meeting with the oncologist on Friday.

Oddly enough, one of the first reactions I had was extreme disappointment with myself. My body wasn’t strong or good enough to fight off this disease at least a little bit more. Before too long that transformed in to a fairly high level of depression. My wife and I ate at home; I just wasn’t up to going out. The alcohol flowed, but did little. Bedtime came and I took some Xanax to help with sleep.

The next morning the depression was significantly worse. I just wanted to give up, although I never clearly formed what that would mean. My wife and I had a lifeless lunch out and upon returning to the house I laid back down in the bed. Sleep has an incredible restorative effect on me. When I woke up, I’d been asleep close to 17 hours, on and off, from the night before.

I felt like my old self. Problems to deal with, but a life to live and enjoy. I made an appointment with the TMS people to get a tune-up treatment to hopefully make it easier to get through this depression.

It’s now time to call it a day. If anything noteworthy happens tomorrow, I’ll let you know.

P.S. Thanks so much to those of you who commented. It really did help me through the toughest part of the depression. The way the day unfolded I haven’t had time to reply to you, but I assure you I will do so.

Lupron and 17.1

Received my first one month shot of Lupron today. The last one was well over a year ago. This is part of my one month on Lupron, three months off protocol. I was supposed to get it two weeks ago, but we had a trip planned to Las Vegas, from which we just returned, and the oncologist decided he wanted to wait until my return.

We measured my PSA a couple weeks back. It rose to 17.1. Apparently nothing to get too concerned about since I’m on Lupron now, but still a little scary to me.

The last month or so has been a lot more eventful than I wanted. The TMS really did the trick with depression, but just as the depression was going down, my anxiety built. I’m pretty sure it was all about going back on Lupron and how well this new protocol will work. I have serious problems with being on Lupron for more than a few weeks, so this one month on and three months off is a significant modification of a proven protocol – but it’s not a proven protocol. We don’t really know how well it will work. Fortunately, simply tracking my PSA will tell us. So I still have some considerable background anxiety. If we can’t find some way to incorporate Lupron into my schedule, I’m slated for a considerably shorter life. It’s hard for me to put that out of my mind. It’s probably going to take at least 8 months to know for sure how it’s working. I’m hoping over that time the anxiety will naturally subside at least a little.