Xofigo and my bone mets

Oligometastatic is a term used to indicate the number of bone metastasized tumors a patient has. It applies to both prostate and breast cancer patients – perhaps to other cancers as well. To be oligometastatic is to have just five or fewer such tumors. Further, oligometastatic patients are thought to be “curable”, while those with more than five tumors are not. (In this case, “curable” really means having a good chance of achieving durable dormancy for those tumors.)

My bone scans have shown that my metastatic tumor burden (mets) has been much larger than five for many years. For the last 2 years it appears that my bone mets have been dormant. “Unfortunately, many [patients] conclude Xofigo isn’t working because of increasing prostate-specific antigen (PSA )
and continuing BALPbone pain. But your PSA can continually increase during Xofigo treatment. There is a better marker than PSA in this situation. Bone-specific alkaline phosphatase 
is released by osteoblasts as they
 lay down the blastic bone metastasis. In men responding to Xofigo, bone-specific alkaline phosphatase will drop, sometimes dramatically.”¹
(Click on the thumbnail at left.)

Although it is clear that the Taxotere could attack and kill many of the cancer cells in my skeleton, it wasn’t up to the task of nailing them all. It is also clear that Xofigo was immediately and seemingly completely effective at that task. Further, these sites have remained dormant since February 2014. What good fortune!

A note of caution: I know from my correspondence that the administration of Xofigo has not been as successful for some other PCa patients. The body chemistry of that drug seems so straightforward that this negative experience of some patients is a puzzle to me. I have heard from women for whom Xofigo had been prescribed for bone-metastasized breast cancer, but I don’t know how they fared.

  1. Quote from Dr. E. David Crawford.

Coping with Chemotherapy – 2

There are apparently a substantial number of my comrades today (men with serious, seemingly treatment-resistant PCa) who have balked at their oncologist’s urging to try Taxotere chemotherapy at this point in their treatment strategy. That’s understandable because of all the tough stories one hears related to chemo coping by folks with other cancers. It’s also unfortunate because the chemo just might help get their PCa under some modicum of control and enable more successful treatment by a follow-on drug.

For me the good news has been that Taxotere has so far succeeded in lowering my PSA dramatically every time I have needed something to “draw me back from the cliff.” The bad news is that, because it has been so effective, I now look forward to an indefinite number of rounds of low-dose chemo. These rounds may not end until the Taxotere is no longer effective against my cancer. This is a dreary prospect indeed. And so, I’ve had great incentive to develop coping skills.

I write this piece as a reluctant veteran of more than 35 infusions over the past 2½ years. I’m very grateful for the continued effectiveness of Taxotere, especially since some of the new whiz-bang drugs don’t seem to be effective against my cancer. But, I worry about how many times my immune system can take this beating and still bounce back. So, as I have written in earlier posts, low-dose chemo (LDC) is my preference.

In this post I’ll address the chemotherapy routine I experience and how I try to minimize its impact on me physically and my lifestyle. Hopefully, it will give others confidence in giving it a try. First, LDC is a once-a-week for three weeks in a row regimen, followed by a glorious week off. Day 0 is the day of the infusion. I will have started ramping up on dexamethasone on Day -1. This means I stay up very much later that night than my usual 9 pm bedtime because I’m so wide awake. On Day 0 I will either give myself or receive as part of the infusion cocktail 16 mg of dexamethasone. On Day 1 I will ramp down off the dexamethasone. The purpose of these steroid doses is to dial back my immune system so it doesn’t fight the poison in the Taxotere so hard.
Day 0 is usually a no-never-mind for me. After the infusion, I can do a few errands or chores before I hit the sack for a nap. Day 1 is where the challenge begins. First thing in the morning on Day 1 the “metal-mouth” starts. Several important early morning foods, like a cup of sturdy black coffee, taste really yucky.

What to do about metal-mouth? Last Fall the chief shared with us that one of his patients has tried gargling a half-dozen drops of Tabasco sauce in an small amount of tepid water. So, I tried this recently and now do this gargle first thing – while the coffee is brewing. Sure enough I can’t taste much after that, but the coffee tastes good enough to drink. And, I can go on to almond butter on toast, cereal, eggbeaters, pancakes, etc. It isn’t really great, but it satisfies.

After each meal I brush my teeth to remove residual metal mouth and chew sugarless gum to replenish saliva. As with the gargle I keep this up for 5 days. In the evening it is a different story. I like to imbibe a glass of red wine at cocktail time. In high dose chemo “school” we were advised to avoid alcohol for 48 hours before and 48 hours after the infusion. That may still be good advice – I don’t know. On LDC I manage to indulge in my red wine addiction without missing a beat. The challenge comes from metal-mouth in the evening. On days 1 – 5 all wine smells badly (landfill bouquet, if you will) and tastes sour. Recently, my dear spouse happened upon some Roquefort cheese made with sheep’s milk. (Since sheep eat grass not corn, this cheese is OK for my diet.) Something inspired me to try some of this Roquefort cheese on small wheat crackers one evening. Surprise! The metal mouth was put down enough so that I could enjoy both the cheese, the bouquet, and the taste of the wine. Again, not really good, but certainly acceptable in the situation. So much for coping with metal mouth.

My other annoying side effects from the chemo are stomach acid and gas. I follow the advice to drink plenty of fluids on Days 0-2 to help flush residual drug. I search for fluids that continue to taste OK during this time – Sprite Zero, bottled iced tea, etc. More important for tummy comfort is avoidance of high-acid foods during Days 1-5. So, orange juice is out, as are fresh berries, fresh tomatoes, lentil soup, gazpacho,etc. But, fresh melon and pears are in, as are clam chowder and creamy soups, sliced turkey breast, tuna fish or chicken salad, and fresh lettuce.

This all goes on until Day 6 when I let myself eat all this stuff with reckless abandon. My digestive system handles it OK, and I enjoy the change of pace. Day 6 is only marred by the fact that it is the day before the next infusion (Day -1). I begin again the dexamethasone ramp up as I have strawberries on my cereal and drink a glass of orange juice. Thus, the process starts again.

I have given up trying to accomplish much until week 4 arrives with all its relative freedom. During “on weeks” I move slowly, do one or two small chores, stay out of the heat, cold or wind, try to exercise a little, and stay away from others who might have colds or other communicable ailments because my white blood count has been crushed for the week. I pass many days sitting still reading, working at my computer, and napping. Because the chemo depresses me and sours my attitude during the on-weeks, I don’t inflict myself on normal people during that time.

Other side effects I experience: peripheral neuropathy, tears, and hair loss. Peripheral neuropathy – after all these infusions I do have a peculiar feeling in my toes. I can still straighten and flex them all, but a peculiar sensation exists. Tear production –  there is plenty of that at times of great discouragement but not caused by the chemotherapy itself. Hair loss – yes, big time after about four of the 75 mg/m² doses (HDC) in 2011. It came back curly and wavy. The LDC chemo last spring did not cause much loss at all. However, with LDC this spring it is coming out in my comb aplenty.

Coping with Chemotherapy

After this year’s Heritage Hunt Walk for Cancer – October 1, 2011

During this second round of intermittent chemotherapy (ICT) I’m working on dealing with the side effects of the chemo infusions that come every three weeks. The infusion appointment takes barely an hour and, for me, is a time read articles on my laptop. (I suspect that the 16 mg of the steroid Dexamethazone prescribed for the day before, the day of, and the day afterwards, makes this possible.) In the first week that follows, the “controlled poison” searches out and kills fast growing cells; this action nails many cancer cells and decimates my white blood cell population in the process. It understandably takes one down mentally and emotionally and leads to big-time lethargy – this I can handle because it’s part of the process.
But, I also experience a stomach ache that subsides only when I lie fully reclined in my chair or go to sleep. Recently, we learned this is very likely caused by excess stomach acid. Eating bland foods during this first week has helped. Since it has yet to rise to the level of nausea, I made little mention of it to my medical team during the first round last winter/spring. This time around I want find a drug (some have suggested Nexium) to help me control the stomach ache – I’d like to be able to sit up and watch football this fall.
By the 10th day following infusion, I’m into the middle of the second week and starting to recover. I’m vulnerable to diseases from others because my immune system has been weakened from the loss of white blood cells. This second week is called “the trough” because the white blood cell count reaches a nadir. Toward the end of that week my energy level and enthusiasm for doing things rebounds. Today – beginning the third week – I walked with Heidi about half the route of the Heritage Hunt 5K walk for cancer. I might have gone farther but for the cold temperatures and bitter wind this first Saturday of October. Wine tastes OK again; I’m looking forward to an olive oil sauteed oyster dinner one day next week?
Next Friday, October 7th, comes the next infusion – it’s back into the soup again! Wish me luck!