Renewed Hope, again

After recovering from a our frightening summer, we got a great lift from our Tuesday visit with the chief. He is happy that my bone metastases seem to remain in remission, and confident there are tools for controlling the new soft tissue mets in my abdomen. At the rate I was losing weight up through the beginning of October, I thought I had also been afflicted by cachexia (kah-kek’-si-ah), a wasting disease that claims about 25% of advanced PCa patients.

Happily, I have started to regain some weight, now about 140, up from 132. My new rolling walker helps me keep my balance and lets me walk around feeling much less lower back fatigue. Weather permitting, I have been going longer and longer distances outside. I am really anxious to get strong enough to walk comfortably.

At present, the best tool we have to shrink these mets is Taxotere chemo infusions. In search of a less-punishing alternative, I’m going to get a biopsy of these soft tissue mets on the 24th. Getting good (cancer-laden) samples is tricky. If successful, the chief is also confident that analysis of these samples will provide new information on what drugs might work on these tumors in place of the chemotherapy with Taxotere. Bob & Heidi with her sister, Debbie, in late October.

Best wishes to you and your families for a joyous Thanksgiving!

Love, Heidi and Bob

Bob and

Bob and Heidi with her sister, Debbie, in late October


Bob with daughter Stacy and her children on Stacy’s birthday in early October

“Complete, durable remission is still possible”

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.

PSA Chart Nov 2014Details
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

Heidi captured our maple tree on a walk back from South Bull Run

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