Summer 2014 – nadir of nadirs

It has been a month since my last post, and I’m d-E-E-E-lighted to report that progress does seem to be recognizable. (Can you guess what series we’ve been watching on PBS this week?) Please take a few moments to re-read the paragraphs from the August 17th post for background.

I did indeed get the first low-dose Taxotere infusion of this new round on August 18th. As expected, the post-infusion symptoms were a combination of my now-persistent abdominal bloating, nausea and stomach gas, added to the usual, similar post-chemo symptoms. A few days later, in some desperation, we sought help from the new pain and palliative care treatment center associated with our NoVA Capital Caring Hospice Facility. (It is not necessary to be committed to hospice care in order to access pain and palliative care professionals.)

“Break-through” pain reduction treatment was prescribed. My goal became three-fold: (1) reduce stomach pain a lot, (2) increase appetite to the point where I WANT to eat again, and (3) begin exercising to stimulate that appetite.
I increased my dose of the transdermal morphine pain-killer, Fentanyl, to 75 mcg/hr, added an appetite stimulator named Marinol, Simethicon for gas, plus Zolfran and Ativan for nausea. And, I continued the chief’s prescription of 1500 mg daily of Metformin and 450 mg, twice daily, of Sodium dichloroacetate to deny sugar to the cancer cells.

Four weeks later, I have just started the second series of three low-dose chemo infusions. Something is already working! My abdominal bloating is now all but gone. My waist size, which had ballooned to 38, shrank back below 34. Stomach pain levels rarely reached above 2 (on a 0-10 scale). The various factors promoting constipation and diarrhea are now in balance. My mental attitude is more positive, and I have regained a sense of some well-being. More foods are not only tasting good, but causing no problems in my digestive system afterwards . (Unfortunately, my weight is still stuck < 140; wine still smells and tastes terrible.) Finally, I have the motivation to sit at my desk and write this post.

It seems we are once again able to withdraw from the “brink”. Since this withdrawal is from a “different” brink (abdominal metastases instead of skeleton lesions), what is the mechanism? Am I getting rapid cancer-killing action from the Taxotere activity and/or the chief’s new treatment regime? Or, am I simply enjoying the very effective masking provided by the Fentanyl pain killer?

I don’t know the answers to those questions, and I’m very intrigued with the opportunity to speculate. I’ll save that for the next post after I’ve spent some more time researching “retroperitoneal nodal metastases” and their treatment.
Thanks ever so much for all your love and support; it’s palpable and so appreciated.
Heidi and Bob

75th Birthday 2014

75th Birthday 2014

Bob with Michigan friends, Greg and Mary Jackson, September 2014

Bob with Michigan friends, Greg and Mary Jackson, September 2014

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.