We finished 8 low-dose chemotherapy (LDC) infusions of Taxotere on October 20; On Oct. 26 I felt too weak to complete the ninth one (normally last in the series of three) on Oct. 27; it was cancelled. Then, I had a CT scan of my chest and abdomen on October 28 and my monthly blood test on Nov. 1. We had our semi-annual appointment with the chief yesterday, Nov. 12.
The short summary is that ALL bone mets appear to be dormant. My last Xofigo infusion was Feb. 16th. Xofigo (Radium-223) has done good work for me. The soft tissue lesions (tumors) in my abdomen are shrinking in response to Taxotere. The bone lesions would have eventually killed me, as they do many less-fortunate patients, but the chief has several other ways to deal with tumors in the abdomen when Taxotere fails.
The attached chart ( click on the thumbprint at left) tells the story better. Bone-specific alkaline phosphatase continues to decline; it has been in the “normal” range for many months. Booster shots of Xofigo are possible. So much for the bones.
These several lymph nodes mets (called lymphadenopathy (lim-pha-den-op’-athy)) are located principally behind my peritoneum. The term for that is retroperitoneal. In July one of these measured ¾ inch by 1½ inches. The Oct. 28th scan showed that the largest one shrank in size by around 50%. I am disturbed by the sharply rising PSA, but both oncologists advise paying attention mainly to the CT scan results.
The discomfort I felt at the bottom of my spine off & on for the last five years is now largely gone. How come? I do feel sensations of fatigue in my lower back; it is weak and has prevented me from walking comfortably for the last two years. We hypothesize that, while the bone growths constituting my stenosis issues are still there, it was pressure from these slow-growing lesions (tumors) behind the peritoneum on certain nerves emanating from the bottom of my spine that got larger and larger through the winter, spring, and early summer of this year. (After all, I had my last Taxotere infusion in June 2013!) The “referent” pain from this tumor pressure was “referred” to my stomach, which constantly ached this summer. often so much that i could not sleep. This explains to me our miserable, painful, sleep-deprived July, August and early Sept. (last time I’ll whine about that!! Promise!) and why the pain stopped shortly after Taxotere went to work at the end of August.
Now, I use a rolling walker to get around the house and outdoors. It helps wonderfully with my balance walking because I no longer have tighten my abdominal muscles so much to keep my core stable. I have started gentle lower back exercises and to take increasingly longer walks outside, when the weather is tolerable. I’m anxious to build up the lower back muscles, walk upright more easily, eventually to discard the both walker and crutch. With the right combination of cushions I can now sit up comfortably at a table. So, we are starting to visit area restaurants at lunch for a weekly outing.
So, I think things are sounding pretty promising! How does this all sound to you? There is a possible “hitch in the git-along”. I lost more than 20 pounds between the first of July and mid-September; down to 132 in early October. There are a few plausible explanations for this. I just started to gain it back after we stopped chemo on the Oct. 20. (Now up to 140.) At present an unspecified Taxotere dose frequency appears necessary to further shrink the soft-tissue lesions, as well as for “long-term” control of these lesions. Now, when, and if, Taxotere loses its clout, the chief tells us he has several tools in his box that have worked well for others. That’s why he says, “Complete, durable remission is still possible”.
The involuntary weight loss really, really scared us! There is a disease known as cachexia (kah-kek’-si-ah) that kills many cancer patients (25% of those with advanced PCa). The tumor(s) interfere with “genetic switches” that regulate the body’s derivation of nutrients and minerals from food. In healthy people, this leads to building body tissue, muscle, bone renewal, etc. Someone with cachexia simply doesn’t get value from from food, continues to lose weight until the organs can no longer function and shutdown. The chief speculates that the tumors did create cachexia symptoms in July and early August before I started Taxotere, but “lost their impact” on the process when Taxotere “took control”.
So, IF I can handle the Taxotere infusion frequency necessary to continue tumor shrinkage AND continue to gain weight and regain some lower back muscle strength, things should really advance. I have been so concerned about the cachexia these past several weeks, I asked the chief point-blank, “Do you think I have a reasonable chance of surviving to my appointment next May?” “Yes,” he said. (I confess that I had been so frightened I wasn’t sure if I would last to the end of this year!)
I started on the next two series of three LDC infusions last Wednesday morning. It is Day 3 following the infusion; for some reason the only side effect I’m feeling is the fatigue from loss of white blood cells while the Taxotere does its thjing.I still feel very weak, but yet stronger than when we restarted Taxotere on August 18. We will soon know whether feeling a bit stronger means continued weight gain during two series of three infusions.
While we pursue more chemo to shrink the tumors, the interventional radiology unit at nearby Prince William Hospital has studied the CT scan of Oct. 28 and reports that they can obtain a core biopsy sample from one or more of these tumors. The biopsy is scheduled for Monday, the 24th. If successful, the soft tissue tumor samples, like the bone and bone marrow biopsy samples of previous years, will be sent to Caris Dx for molecular analysis. This could give us more tools to deal with the soft tissue tumors.
The infusions will take us until the end of December. That means our usual escape to California from the mid-Atlantic winter will, at least, be delayed. I must also be able to walk much better before making that trip again.
Best wishes to you and your families for a joyous Thanksgiving!
Love, Heidi and Bob
Heidi captured our maple tree on a walk back from South Bull Run