The Beat Goes On

Met with my oncologist today. The results of my last PSA test came in – a little over 50. Bad news. At this point I’m likely to start a on a new drug, either Zytiga or Xtandi. First, I go off Casodex, and we see if I’m in the 20% of men whose PSA drops (for unknown reasons) after coming off Casodex. If so, we’ll wait until it rises again.

Note there’s nothing magic about 50. The accepted standard of care is that Lupron/Casodex are in failure after the PSA rises for three straight months. By that measure, I have already entered failure. My treatment plan has been different from the norm, because I’ve had so much trouble with depression.

Due to side effects, I’m leaning towards the Xtandi when the time comes.

I’m not sure what I thought I’d feel like when I reached this point. Maybe relief, because I no longer had to deal with the anticipation. Instead I feel mostly nothing. It seems like just another step on the path to death. I don’t mean that in a morose way. Death seems more and more like a natural part of life to me.

 

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Oncologist Visit

Met with the oncologist today. My PSA was up about 10% into the mid 30s. He told me that means the Lupron is slowly failing, which is good. He wants to keep me on Lupron (and Casodex) until the month to month jumps hit 20% or my PSA exceeds 50.

At that time we’ll add Zytiga to the regimen and drop the casodex. I thought that I’d be done with Lupron, but that’s not the case. I’ll still get Lupron every month.

I’m a little concerned about going off the casodex, since I feel it was a major factor in controlling the depression. He thinks I just got used to the Lupron. At any rate, if the depression returns, I’ll propose we add casodex back to the mix and see what happens.

I also asked about travel next year, specifically in about seven months. He said there shouldn’t be any problems making the trip, good news!

I’ve started to come to terms with my death likely in under two years. The panic attacks are largely gone and the anxiety is much ore manageable. Interestingly enough, the anxiety and panic is almost always the worst right before I go to sleep. I think I just don’t want the day to end and to officially one day closer to death, but who knows.

A New Phase

Met with the oncologist about a week and a half ago to check up on my PSA. As expected, it went up. I am now officially in a category called castration resistant. What this means is I have, on average, less than 2 years to live. There’s nothing quite like knowing this. I felt like I was dead, but yet still alive to cry and grieve. I’m slowly working my way thru this. Staying in the present is the key. Wondering if my next birthday/Xmas will be my last is bad news. It’s hard to stay in the present, but I’m getting better with the help of my wife.

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.

ReBlog from Invasion of the Prostate Snatchers

Originally Posted Tuesday, June 9, 2015

Discussing a Painful Subject: Fear of the Process of Dying

BY MARK SCHOLZ, MD

Many men tell me that they fear the process of dying—suffering and experiencing pain—more than they fear death itself. While I am no fan of pain, as a medical oncologist I have been responsible for the treatment of hundreds of patients with terminal cancer. I have learned that with good communication and proper medical management, pain can almost always be effectively controlled.

However, when reviewing the results of a recent patient survey at a meeting sponsored by Bayer Pharmaceuticals with a number of patient advocates, healthcare experts, and other physicians, it became sadly apparent that many patients are not being managed expertly. The survey indicated that many men with advanced cancer are suffering needlessly, mostly due to a lack of good communication with their doctors.

This survey of 410 men with advanced prostate cancer reported that two-thirds of men are trying to handle their pain by ignoring it! One-third of all the men surveyed felt that acknowledging pain made them more fearful, raising anxiety about the possibility that their cancer is progressing. A quarter of the men said, “It was difficult to talk about their pain,” relating that such discussions made them feel weak.

In other words, these men are using a common psychological defense mechanism called “denial.” One thing I have learned from years of experience treating patients is that denial can be a wonderful approach, but only if the situation is totally hopeless. I have observed men who appear to be in denial who are quite happy even when everyone knows that they are dying.

On the other hand, denial is a serious problem if what is being denied, in this case pain, can be fixed or remedied. If men who are in denial fail to discuss pain with their doctors, their access to a solution is blocked.

Using denial can effectively control pain for short periods of time, however, using it on an ongoing basis is psychologically exhausting. Also, while denial might work for the patient, it can’t fool their surrounding loved ones. They see the effects of pain in the patient manifesting as fatigue, depression, inactivity, impatience, insomnia and hopelessness. Ultimately, the caregivers who are not shielded by denial end up suffering even more than the patient.

Cancer patients experience pain from multiple causes, not just their cancer. Invariably, life itself is painful. However, most types of cancer pain can be resolved. The first step is to acknowledge its existence. The second step is to diagnose whether the pain is cancer-related. In the prostate cancer world, cancer-related pain is usually the result of bone metastases. Of course, not all bone pain is from cancer and not all bone metastases cause pain. If a man has pain in one of his bones and a bone scan shows a metastatic lesion in the exact same area as where the pain is occurring, then the probability is high that the pain is cancer-related.

The third step, once it has been confirmed that the pain is cancer-related, is to undertake the appropriate treatment. How to treat cancer-related pain is a topic big enough for another blog all its own. In my next blog I will also elaborate further on the correct medical approach used to distinguish cancer pain from non-cancer pain.

Someone has said, “Not knowing what to do is the worst kind of suffering.” Helping men find a workable solution for pain not only relieves their pain, but it also releases them and their caregivers from the uncertainty and anxiety that comes from not knowing what to do.