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.

 

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.

“How are you doing?”

Like most of us, I get this question pretty regularly. Unlike most people, it seems if I respond with good or even great and no more detail, some folks look disappointed. I think the question they really want to ask me is “What kind of side effects are you dealing with, what’s your mental health, and/or what does the future hold?” I purposefully rarely answer these questions, unless asked specifically.

One of the things that I’ve learned living with cancer is that it’s critical to stay in the moment, focused on the right now. When people ask me how I’m doing I tell them how I’m doing right then. I make a point of not going into those other details for the simple reason it would take me out of the moment and force me to dwell on unpleasant topics. After providing my answer I’d then be stuck in my cancer mess trying to get back in the moment. Not a good way to start a get together for me at least.

There may be times when I “open up” and go into detail, but don’t expect it. Even these YAPCaB posts are hard for me, but at least they provide my experiences for other cancer patients and inform people who care about what’s going on with me.

Reblog from The Prostate Snatchers

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A Xofigo Update
Posted: 22 Jul 2015 06:46 PM PDT
BY MARK SCHOLZ, MD

Since Xofigo was FDA approved two years ago, the doctors at Prostate Oncology—Dr. Richard Lam, Dr. Jeffrey Turner and I—have been avid users.  So this seems to be a good time to provide an informal update of our experience with Xofigo to the present time.

The clinical trial that led to Xofigo’s approval by the FDA was a prospective, placebo-controlled study demonstrating improved survival in Xofigo-treated men compared to men treated with placebo alone.  The trial showed a very low incidence of side effects and good relief for men who were suffering from bone pain.

Xofigo is made out of radium, a radioactive element. After it is injected into the blood stream it concentrates near the cancer and delivers a potent dose of radiation.  So after Xofigo is injected into the patient, it travels through the blood stream and concentrates in the irritated areas of the bone and emits radiation where the cancer is most active.  Since prostate cancer spreads almost exclusively to bone, an injection of Xofigo ends up targeting most if not all of the cancer. Radiation consists of high energy, subatomic particles that blast cellular DNA. Once the DNA of the cancer cell has been hit, the cell is rendered incapable of reproduction.  If you stop cancer reproduction you basically stop the cancer.

To almost everyone, radiation conjures up horrible visions of toxicity. Fortunately, bone marrow toxicity is rare in men because Xofigo emits a different type of radiation, “alpha particles,” rather than the standard “photon type” of external beam radiation. Alpha particles dissipate their energy over a very short distance, only a couple of millimeters. External beam radiation therapy, the type of radiation that has traditionally been relied on to kill cancer cells in the bone, needs to be used very judiciously because the radiation is “beamed” through the body to hit the target in the bone. Typically it causes irreversible damage to the surrounding bone marrow.

Over the last two years at Prostate Oncology, we have treated over 50 patients with Xofigo.  The treatment has been very well tolerated.  Occasionally, we have seen a few patients with mild diarrhea or nausea that has been easily managed with common medications. Men experiencing pain from cancer usually see either partial improvement or total resolution of their pain after one to three of the monthly treatments.

As reported from the original study that led to FDA approval, even though pain relief occurs and alkaline phosphatase (ALP) levels in the blood decline, PSA may continue to rise.  This “disconnect” between PSA and other clinical parameters such as pain and ALP can be disconcerting to doctors and patients alike.  The reason that it occurs is unclear. A similar phenomenon has been observed with another FDA-approved cancer therapy called Provenge.

Experts hypothesize that the survival advantage from Xofigo and Provenge is due to a slowing of cancer progression rather than an actual regression of the cancer. This “slowing” is powerful enough to extend patients’ lives but insufficiently powerful to consistently induce a decline in PSA.  However, in our practice at Prostate Oncology notable declines in PSA have been observed in a few patients treated with Xofigo.  One patient dropped his PSA from 50 down to zero and his PSA still remains at undetectable levels.  Another recent patient has dropped his PSA from 150 down to 8.

For the patients on Xofigo who have rising PSA levels, it is logical to consider adding another effective anticancer agent such as Xtandi, Zytiga or Taxotere.  It is encouraging to know that several studies now show that Xofigo can be safely combined with these other effective therapies.

Xofigo has been a very welcome addition to our anticancer armamentarium.  The standard FDA approved protocol consists of a course of monthly treatments continued for a total of six months.  Further trials are in progress to study the potential advantages of continuing Xofigo for longer than six months.  Our experience to date suggests that longer therapy would indeed be advantageous in some instances.