Suddenly, a change from bone mets to soft tissue tumors

For the past 10 years diagnostic tests have shown that  >95% of my cancer occurs in my skeleton. Suddenly, it appears my treatment program must begin addressing soft tissue disease progressing in my abdominal lymph nodes, glands and organs. The two PET/CT scans conducted in May did show that Xofigo pretty well wiped out all the bone metastases. But, my PSA did not drop below 5 during the springtime. Moreover, PSA began rising in early June (see chart below right). Lately, it began doubling every month.

Blood test data - August 6, 2014

Blood test data – August 6, 2014

Just as mysteriously, in late June I began experiencing sharp pains that move randomly around my left rib cage, and then, dull aches typical of bloating, stomach gas, and nausea in the middle of my belly. Conventional explanations for those two sets of symptoms are: an attack of “intercostal muscle strain” and “diverticulitis”. Accordingly, I was treated for the intercostal (rib cage) muscle strain after the first ER visit in early July. On the second trip to the ER in late July, a CT scan showed strong likelihood of disease progression in one or more lymph nodes and other soft tissue. Still, the stomach pain symptoms looked like a “ringer” for diverticulitis in normal folks. So, I spent a week on heavy-duty antibiotics for that. At a follow-up visit a week later with our gastroenterologist, there was no change in the symptoms; he began to suspect cancer involvement. This past Monday the chief and our NoVA oncologist declared their agreement with the GI physician.
So, what treatment is immediately available that has been proven effective in this situation? There are evidently no “targeted” therapies. The answer is: Taxotere chemotherapy. The oncologists seem anxious that we treat these symptoms as “cancer-caused” while I still have the strength to tolerate the side effects.
At first, I recoiled at the thought of dealing again with the stomach acid and gas I have experienced on the days immediately following my 30+ Taxotere infusions since early 2011. Then, I realized that the “mysterious symptoms” mentioned above have been causing even worse stomach acid, gas and nausea every day for the last six weeks! Why not give it a try? The first Taxotere infusion to attack soft tissue cancer is scheduled for tomorrow morning, the 18th.

Heidi & Bob and all our grandchildren except for Emily – July 2014


The weather in NoVA this summer has been comfortably cool; we are told it’s been downright chilly in northern Michigan. And, we enjoyed several visits from all our grandchildren, except for Emily who, coming up on 3 months old, couldn’t fit a trip east into her schedule.

Xofigo may be a silver bullet yet

After all these years, there is suddenly REAL HOPE for long-term optimism. (Please review the February 9, 2014, post below to set the background for this post.)

We did complete the six Xofigo infusions in mid-February and went back on Leukine injections a month later. The next step would be a PET/CT to look for skeletal lesions.

The PET/CT scan was finally performed last Friday, May 9th; we visited with the chief yesterday. Apparently, the radiologist’s report contained largely good news, and also an area of uncertainty. (Heidi and I haven’t seen it yet.) Because the radiologist observed a “lesion of uncertain cause infiltrating my bone marrow”, the chief has written a test order for another PET/CT scan – this time using the glucose analogue FDG. He is looking for cancers (often called small cell cancers) with an affinity for glucose. If these are found in this second scan, another bone marrow biopsy is tentalively planned to sample those tumors and send them off for genetic analysis. I sensed that this is a lesser concern. The followup procedures are necessary, however, to complete the assessment.

So, why am I writing this when it seems we’re up to our ears in yet another program of diagnostics? Yesterday, for the very first time, the chief used the word “remission” to characterize my cancer status. While Heidi admits she is “cautiously optimistic”, I have let myself become simply ecstatic!! He also speculated about a transition to a remission maintenance program. Wouldn’t that be a welcome change?

We earnestly hope he is on target. He isn’t known to “jump the gun”. We are moving quickly to complete all the procedures by, or soon after, the end of May. Please stay tuned.

Is Xofigo my silver bullet?

Biopsy to restage the cancer
This biopsy was performed at Martha Jefferson Hospital in Charlottesville last December 5th. It seemed to have been a success because we were later told that the representatives from both Caris DX and FoundationOne were confident about the value of the material they carried away for analysis.
Oops!…. or ……woo-hoo!! – Xofigo is a silver bullet?
So, you can imagine our surprise, just before Christmas, when the chief texted that Caris Dx had reported finding no viable cancer in the tumor cells their lab had analyzed! It seems unlikely that the Xofigo could so quickly have destroyed all the cancer in that particular part of my skeleton.

Bob and Heidi at the Fish Market Restaurant in Palo Alto, January 2014

Bob and Heidi at the Fish Market Restaurant in Palo Alto, January 2014

And, we still know nothing further at this point. In spite of this uncertainty, the blood test numbers are still looking encouraging. (See chart in the post under Recent Progress.)

In the near future
I will receive my sixth (and final) Xofigo infusion here in northern California next Thursday. After that I anticipate the chief will put me back on Leukine injections. This is the “immune system booster” that was a mainstay of my second-line hormonal therapy in 2009. As usual, we’ll wait and see what happens next.