Our life as a board game--
Our progress through Cancer Land is starting to feel like a game of Snakes and Ladders, the ancient Indian board game where your throw of the dice either lands you on a square sending you upward on a ladder, or drops you onto a spot nested with a snake that slithers you downward, backward in the game. Inch forward—whoops, misstep, slip down another snake—land on a square to climb up another ladder. Life is a bit of a muddle at the moment. But I think we just landed on another snake.
Dr. C walked into our appointment last Thursday with her usual bright and careful smile, pausing to shake both our hands.
“How are you feeling, Mr. Ashburn?”
(Tell us about the CAT scan!)
“Are you in any pain?”
(Tell us about the CAT scan!)
“We don’t have all your blood work yet, but this looks pretty good…”
(Please, please, just tell us about the CAT scan!)
Why are we so polite? Why do we sit there, with bated breath, waiting for her to get around to the most important point, while all we want to know is WHAT ABOUT THE CAT SCAN.
“Unfortunately…the CAT scan shows new tumors…”
We suspected that the news would be bad. Mark’s ascites (accumulation of fluid in the abdomen) has accelerated again, and since Mark’s diagnosis, this has been a consistent indicator that a treatment is not being effective. With the ascites, Mark has multiple intestinal problems, and the weight of the fluid on his body makes sleep difficult. He also has no appetite. I can hardly believe that anyone can sustain life on the tiny amounts of food he manages to keep down.
The CAT scan shows that the “old” tumors have grown only slightly, so they are still being mostly controlled by the current medication. However, two new tumors have emerged in Mark’s liver.
These results mean Mark is done with this clinical trial. We will never know if the second drug he was taking was the experimental drug or the placebo. Dr. C proposed, and we agreed, that Mark will begin a new course of treatment. This will be the third. This course will include taking Xeloda, the drug we know he was taking in the clinical trial, and to that will be added a once-every-three weeks infusion of Oxaliplatin, which he hasn’t taken before.
Dr. C tells us that the average period of effectiveness for this combination is six months.
However, Dr. C had told us that the average period of effectiveness for Xeloda alone (assuming the second drug in the just-finished clinical trial was a placebo) was four months, yet we saw a resurgence of tumors at six or seven weeks. Welcome to the uncertain world of averages…
I again asked Dr. C about immunotherapy trials, because I’ve learned that some of them are very promising and are producing good results. She was not encouraging. Drug companies want a cadre of patients who present the very best chance of showing a new drug’s effectiveness. Because Mark has ascites, and ascites is a very bad outcome indicator, she told us it will be unlikely that he’ll be accepted in a trial, even those that are open to patients who have attempted and failed at other courses of therapies (like Mark).
(I shudder at the language. We are trying so hard, and yet we’ve “failed.”)
And, she tells us, none of the immunotherapy trials so far have shown any success with pancreatic cancer.
She looks me straight in the eye.
“Zero,” she says.
Dr. C sends us off with information about enrolling in the “Know Your Tumor Initiative” sponsored by the Pancreatic Cancer Action Network. We called the network this morning. If Mark is accepted in the program, they will use his biopsied tissue to provide molecular information about his tumors, to see if we can identify the specific mutations involved, and they can then (possibly) connect us with potential treatment options, including clinical trials, that target those mutations. No outcome is promised, but why not try?
I think they could have come up with a better name than “Know Your Tumor.” It sounds too jaunty for me. I don’t want to know Mark’s tumors. I want to obliterate them from the face of the earth. I want to crush them.
We’re also going to make a run at the clinic at Bastyr Center, a well-known and reputable clinic for naturopathic medicine. We aren’t expecting any cure from them, but they may have therapies that will help us with symptom management, especially Mark’s nausea and inability to eat. I think at this point he’s tried six or more prescribed drugs to control his nausea, and none has worked. (Thanks to the efforts of our wonderful friend Nancy, Mark also gave “vaping” marijuana a brief try. At first, we thought it might work, but I think at this point his condition is just too extreme.)
This morning, I pulled out the paperwork we received last Thursday. We are always given copies of the results of any tests, like the CAT scan and Mark’s blood work. (At this point, I have enough paper to fill at least one file cabinet.) Imagine my shock when I notice that the blood work report is for another patient, not Mark. Panic, panic…what if they’re making decisions for Mark based on someone else’s blood work? I made a quick call to the clinic, to confirm that the doctor had been looking at the right results. There must have just been a mixup at the printer. My oh my. This process requires constant vigilance.
Our progress through Cancer Land is starting to feel like a game of Snakes and Ladders, the ancient Indian board game where your throw of the dice either lands you on a square sending you upward on a ladder, or drops you onto a spot nested with a snake that slithers you downward, backward in the game. Inch forward—whoops, misstep, slip down another snake—land on a square to climb up another ladder. Life is a bit of a muddle at the moment. But I think we just landed on another snake.
Dr. C walked into our appointment last Thursday with her usual bright and careful smile, pausing to shake both our hands.
“How are you feeling, Mr. Ashburn?”
(Tell us about the CAT scan!)
“Are you in any pain?”
(Tell us about the CAT scan!)
“We don’t have all your blood work yet, but this looks pretty good…”
(Please, please, just tell us about the CAT scan!)
Why are we so polite? Why do we sit there, with bated breath, waiting for her to get around to the most important point, while all we want to know is WHAT ABOUT THE CAT SCAN.
“Unfortunately…the CAT scan shows new tumors…”
We suspected that the news would be bad. Mark’s ascites (accumulation of fluid in the abdomen) has accelerated again, and since Mark’s diagnosis, this has been a consistent indicator that a treatment is not being effective. With the ascites, Mark has multiple intestinal problems, and the weight of the fluid on his body makes sleep difficult. He also has no appetite. I can hardly believe that anyone can sustain life on the tiny amounts of food he manages to keep down.
The CAT scan shows that the “old” tumors have grown only slightly, so they are still being mostly controlled by the current medication. However, two new tumors have emerged in Mark’s liver.
These results mean Mark is done with this clinical trial. We will never know if the second drug he was taking was the experimental drug or the placebo. Dr. C proposed, and we agreed, that Mark will begin a new course of treatment. This will be the third. This course will include taking Xeloda, the drug we know he was taking in the clinical trial, and to that will be added a once-every-three weeks infusion of Oxaliplatin, which he hasn’t taken before.
Dr. C tells us that the average period of effectiveness for this combination is six months.
However, Dr. C had told us that the average period of effectiveness for Xeloda alone (assuming the second drug in the just-finished clinical trial was a placebo) was four months, yet we saw a resurgence of tumors at six or seven weeks. Welcome to the uncertain world of averages…
I again asked Dr. C about immunotherapy trials, because I’ve learned that some of them are very promising and are producing good results. She was not encouraging. Drug companies want a cadre of patients who present the very best chance of showing a new drug’s effectiveness. Because Mark has ascites, and ascites is a very bad outcome indicator, she told us it will be unlikely that he’ll be accepted in a trial, even those that are open to patients who have attempted and failed at other courses of therapies (like Mark).
(I shudder at the language. We are trying so hard, and yet we’ve “failed.”)
And, she tells us, none of the immunotherapy trials so far have shown any success with pancreatic cancer.
She looks me straight in the eye.
“Zero,” she says.
Dr. C sends us off with information about enrolling in the “Know Your Tumor Initiative” sponsored by the Pancreatic Cancer Action Network. We called the network this morning. If Mark is accepted in the program, they will use his biopsied tissue to provide molecular information about his tumors, to see if we can identify the specific mutations involved, and they can then (possibly) connect us with potential treatment options, including clinical trials, that target those mutations. No outcome is promised, but why not try?
I think they could have come up with a better name than “Know Your Tumor.” It sounds too jaunty for me. I don’t want to know Mark’s tumors. I want to obliterate them from the face of the earth. I want to crush them.
We’re also going to make a run at the clinic at Bastyr Center, a well-known and reputable clinic for naturopathic medicine. We aren’t expecting any cure from them, but they may have therapies that will help us with symptom management, especially Mark’s nausea and inability to eat. I think at this point he’s tried six or more prescribed drugs to control his nausea, and none has worked. (Thanks to the efforts of our wonderful friend Nancy, Mark also gave “vaping” marijuana a brief try. At first, we thought it might work, but I think at this point his condition is just too extreme.)
This morning, I pulled out the paperwork we received last Thursday. We are always given copies of the results of any tests, like the CAT scan and Mark’s blood work. (At this point, I have enough paper to fill at least one file cabinet.) Imagine my shock when I notice that the blood work report is for another patient, not Mark. Panic, panic…what if they’re making decisions for Mark based on someone else’s blood work? I made a quick call to the clinic, to confirm that the doctor had been looking at the right results. There must have just been a mixup at the printer. My oh my. This process requires constant vigilance.
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