Postponed – biopsy, new drugs

The updated chart of PSA (click on the thumbnail below) seems to belie the almost certain progress we’ve made since late November. The post-Thanksgiving CT scan and my newly found walking strength is clear evidence that my malignant retroperitoneal nodules are really shrinking .PSA, BALP & T
The chief’s original plan
In late November, at the time of our last post, it appeared my PSA was again increasing rapidly. At the chief’s suggestion, we had planned to switch from Taxotere to Jevtana chemotherapy, as well as perform another biopsy of cancerous tissue in these nodules. It was hoped that Jevtana would turn quickly around the PSA. And, another genetic analysis of the cancer tissue would indicate whether a new drug, Olaparib, could deliver major damage to my remaining cancer cells. We were soon surprised.
Plan B
First, the local radiologist studying the images from the November 27th CT scan concluded that the retroperitoneal nodules had shrunk too much to safely permit another biopsy in this part of my abdomen so close to a major aorta and my spine. That, of course, we welcomed as good news. But, it also meant that checking the potential effectiveness of the new drug, Olaparib, would have to be determined differently. Next, as noted in the late November post, our local oncologist expressed reservations about switching to Jevtana so quickly. So, I did go back on low-dose chemo on December 7th for the first series of three infusions. To my delight my body did manage to tolerate the old routine very well. We completed the second (and last) series on January 27. The success of this plan B is still somewhat in doubt, as shown on the chart.
Lower back pain link to malignant retroperitoneal nodules
Our suspicions about this link have grown stronger since the late November post.
Looking back at my day-planner I realized that I started pushing my walker for greater distances in late October. The pleasant temperatures we enjoyed in November and December made such walks easy. By mid-December I noticed that my lower back muscles were getting a bit stronger, and my walking was limited only by fatigue. By Christmas-time I was pushing the walker for a mile round trip. Now, with temperatures rarely as high as 50, I’m up for just a half-mile. I haven’t yet tried that trip with just my hiking sticks for balance, but that’s coming soon – maybe when we get to California next week after the SuperBowl.
Whither now?
If all my bone mets are indeed “dormant”, and the Taxotere is chasing down the shrinking nodules, it seems my PSA should really start to fade. Again I hear my ever-present refrain: “the next few months’ blood tests should be very interesting.”


New drugs on the horizon

Since September we have been wondering: (1) what is the reason for my rising T and PSA (Click on thumbnail at left)? (2) why Nov '15 chartaren’t the malignant retroperitoneal lymph nodules shrinking? and what’s happening with my lower-back stenosis? But, we have made a little progress worth describing. In this post I will discuss: a new chemotherapy drug (Jevtana), two new targeted drugs (Olaparib and Ovidio), my peripheral neuropathy and poor balance, and a possible link between lower back pain and cancer.

Change from Taxotere to Jevtana in the works?
My PSA has been rising since mid-year in spite of the monthly doses of partial dose Taxotere. It seems clear that these monthly infusions at the “low-dose rate” are not doing the job. The chief thinks it’s time to change to Jevtana, a successor to Taxotere in the taxane family of chemo agents. My local oncologist has suggested that we first try two more series of three low dose Taxotere infusions (one every week for three weeks, then a week off) to see if this return to my previous Taxotere dosing regimen still works. He believes that the side effects of returning to this regimen will be no worse than those of Jevtana. The latter drug is known to be very hard on one’s white blood cell (WBC) count. And, the six infusions of Xofigo two years ago have altered my capability to generate new WBCs. My first Taxotere infusion on this routine is scheduled for Monday, December 7th. We should know by late December if this old Taxotere regimen will shrink the malignant lymph nodes and lower my PSA. If not, then we will be switching to Jevtana.

Olaparib and Opdivo
Two new targeted drugs, Olaparib and Opdivo, are now available for PCa patients with my treatment history. It is important to first determine the likelihood that either of these drugs will be helpful because both are quite expensive. In December we will make another trip to the “interventional radiologist” for a second biopsy of my malignant lymph nodes. We expect to learn whether I am carrying the PD-L1 protein (or its receptor) and/or defects in my cancer cells’ DNA repair genes. If so, we know that these two drugs have produced dramatic results for other PCa patients!

The results should be available in January. If these are positive, I will write more next year. The chief did say that he has a patient being treated with both of these new drugs.

Peripheral neuropathy and balance
Over the course of 58 infusions in the past five years my body has absorbed ~3500 mg of Taxotere chemotherapy. This is more than enough to provoke peripheral neuropathy – tingling and/or numbness in hands and feet. About 3 years ago I began to feel a “fuzziness” in my toes but nothing in my fingers. Now it seems that the “uneven gait” – poor balance when walking – I’ve been complaining about for the last two years is caused by a steady increase in sensory nerve neuropathy in my toes and feet. It is difficult to reverse this condition because sensory nerves are not known to rejuvenate. So, while I may “graduate” to my walking sticks with therapy, it seems I’ll be depending on my walker for balance for quite some time.

Lower-back pain and retroperitoneal cancer – a link??
I began to feel come & go discomfort in my lower back in early 2009. In mid-2010 my PSA  suddenly took off to new six year highs. (See second chart under “Chronology”.) This discomfort would occasionally become real lower back pain as the years passed. From late 2010 until mid-2014 we were fully occupied trying to treat the large number of metastases found in my skeleton. I thought the low-back pain was simply wear-n-tear arthritis. Starting Xofigo in Fall 2013 brought an end to concern over the skeleton.
The malignant retroperitoneal lymph nodes discovered in July 2014 are close the lumbar vertebrae where my stenosis was diagnosed from an MRI in June 2013. In the Summer/Fall of 2014 I returned to full-dose Taxotere chemotherapy to shrink these lymph nodes. During that time I noticed a decline in the pain I would feel in my lower back. And, I began wondering if there was a linkage.
Again, in the last 4-5 months, it seems the “discomfort” has gone down again. My PSA has been rising, and the lymph nodes don’t appear to shrinking appreciably. Nevertheless, I’m having all-around less discomfort in my lower back. The sensation has moved down to my “tailbone”, and I no longer feel it in my sciatic nerve. When I go out with my walker, I can go about ½ mile before I feel fatigue. Fatigue – yes, but pain – no.   Hoo-ray!

Nodules stable but not reduced in size

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.

PSA, BALP & TMy 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.