When I first began to draft this update, we had just returned from two delightful weeks at the family cottage in northern Michigan. It was a wonderful break for Heidi that she richly deserved. I too enjoyed seeing long-time friends, but I confess the trip took a lot of energy.
Now, it is mid-September; I finished my September infusion a few days ago. Our outlook is much brighter today. I think this post might be a bit longish. I want to take stock of how things stand. Please bear with me.
So, where are we now?
My Testosterone (T) is unexplainably climbing and so is my PSA. (Please click on the chart thumbnail below to see a chart of T, PSA and BALP (bone-specific alkaline phosphatase) for the first eight months of 2015.
My BALP is wandering around well within its normal range (0-20 ng/ml). From this I infer that any remaining PCa mets in my skeleton are still inactive or dormant. A CT scan of my abdomen performed last week, the first since last January, surprised us by showing that the retroperitoneal nodules had not changed since the January scan! Further, there is no evidence of new abdominal tumors. That means things are stable for the first time in many years. Hallelujah?? Well, not yet!
Nagging questions remain
1. I thought the CT scan would show that those nodules had grown and were putting lots of pressure on my plumbing. How else to explain the switch from months of fighting diarrhea from the Xtandi to worrisome constipation? The reasons for this development are a puzzle; I haven’t needed a laxative for a long time. Fortunately, this problem now seems to be resolving itself as mysteriously as it arose.
2. Why is my T beginning to climb? It is still well below the so-called “castration level” of 50 ng/dL. (This refers to a man’s expected T level after physical castration.) I have been on chemical castration drugs, also known as hormone blockade, for more than 8 years. I am used to my T being consistently undetectable at < 2.5 ng/dL.
3. If things are “stable”, why is PSA rising? Could the PSA rise be linked to the T rise?
4. I have taking Xtandi ( a pill taken in the evening) for 10 months. Have I been on it too long? It is generally accepted that cancer cells eventually morph to build resistance to a new drug. Xtandi has worked well for me in the past, but this is the first time I’ve been on it this long. My VA oncologist suggested I take a 30 day Xtandi holiday; we will watch my numbers closely in the interim. (Click on the hi-lited text to go to a short discussion of how Xtandi works.)
Lower back stenosis
We visited both a neurologist and an orthopedic surgeon in July; the surgeon’s assistant thought we should ask a neurologist’s opinion of the reason(s) for my poor balance. The two physicians disagreed on the cause of my poor balance, but did agree it wouldn’t be a factor in spinal surgery. Whatever, the orthopedic surgeon recommended against the lower back surgery. First, he said that he is not at all sure that cleaning up some bone spurs and relieving the pressure on some nerves would relieve the lower back pain I experience. (I was too astonished to quiz him on his reasoning.)
Second, the years of PCa treatments have left me with “hard bones” that may very well affect his ability to remove the spurs. It may also mean that disc fusion with rods and screws, should such be needed, would be even more chancy.
So, I will look for other treatments, e.g., acupuncture, in my continued quest to walk comfortably again and get more exercise.
Quality of Life
So much for my attempts to communicate something about the science of all this. How has it affected me? I have complained about loss of muscle mass and energy for several years. Since early summer I have felt weak and able to take care of little more than personal hygiene. (Of course, I can still get to the comfortable chair at my computer and assemble this post, as well as to my recliner chair to read.)I suppose I shouldn’t be surprised. Eight years of testosterone deprivation and 5 years of on-off chemotherapy is probably enough to take the starch out of lots of men. I can still take my walker for a stroll around our loop without much pain. I am fighting to retain enough energy to continue using my walker and stay out of a wheelchair.
We are hoping to get to California this winter at least one more time. We are really anxious to visit our family and friends again. Little Emily will be pushing 2 when we arrive. I’m sure she has changed a great deal since last Spring. The big question is whether I will feel strong enough to travel.
Nevertheless, I am happy to be alive and am very grateful to my wife, our medical team and to all our family and friends who supported us and offered encouragement over the years.