Last night I watched the TV coverage of the rioters in Baltimore burning and looting, and carefully studied the map to see if I would be driving through the area while going to and from Hopkins. My route would cross the troubled area, but I doubted that I would have any problems. I checked again this morning and saw that there had been some overnight rioting near the Johns Hopkins campus, but things currently were quiet and the hospital was open. Just in case, I pulled my Glock out of my safe, removed the trigger lock (it took a little while to remember where I had put the key), slid in a magazine, and put it under the driver's seat. Nothing's going to stop me from getting my nivolumab. Of course, nothing happened on drive in or out. I passed a looted Seven-Eleven (really? Slurpees and churros?), and saw National Guardsmen in riot gear with M-16's posted at the doors of the Sidney Kimmel cancer center. Welcome to Charm City.
I didn't have to wait as long as before, because yesterday I had my blood drawn at a local lab, and they had sent the results to Hopkins, enabling the pharmacy to mix up my meds in advance. I met with Dr. Hahn and the clinical trial research nurse, who mentioned that there were a number of cancellations today as other patients decided to stay away. Dr. Hahn palpitated my nodes and said that they felt "mushy" which is better than firm. I guess urologists would know the difference between the two. Dr. Hahn said that our goal was getting a complete response (CR), followed by no evidence of disease (NED). CR/NED sounds good to me.
The infusion was routine - an hour in the chair, three checks of my vitals, and I was on my way home. I'll be back next Tuesday for my second post-nivolumab CT scan. Hopefully, my tumors will be even smaller than before.
May is bladder cancer awareness month. BCAN's annual fundraiser walk is this Saturday, May 2, on the National Mall. You can donate here. Do not bring your Glock to the walk.
Tuesday, April 28, 2015
Tuesday, April 14, 2015
Mets Day 1098: 5th Opdivo infusion; 3 year mets milestone
Today I spent another fun-filled day at Johns Hopkins for my fifth nivolumab infusion. The nurse was unable to get a blood return through my port, despite fiddling with it for nearly an hour. She turned me over to a tech for a regular IV. The tech missed on her first stick attempt, then missed on the second. She switched arms and promptly blew my vein on her third attempt. I suggested that perhaps someone else try, and she turned me over to a nurse who finally drew blood. Since the lab needed 3 hours to prepare my infusion, I was assured at spending the whole day at Hopkins. Fortunately, my good friend Cynthia came up with me, and we passed the day in conversation.
In the interim, I visited with Dr. Hahn. He said how three new patients had mentioned my blog regarding the nivolumab clinical trial and wanted in. He was delighted that word was getting out, and was happy with my evangelizing. I should send him a bill for my time.
I asked if he had further thoughts on the duration of my getting the drug, should I achieve complete recovery (CR). He said that it was not something that was spelled out in the clinical trial documents, but rather was an issue to be decided between patient and doctor. One view was that patients should continue with therapy if it appeared to be working and doing no harm. But once a patient has achieved CR, there is no reliable way to measure whether there is ongoing benefit to receiving the therapy. So the other view was that, if there was no way to measure whether the therapy was working, it should not be continued.
Since there is virtually no data on whether patients with metastatic bladder cancer continue to benefit by receiving nivolumab after CR, there is no informed basis to make a decision one way or the other. Dr. Hahn suggested that the drug company might not want to discourage patients from ending the use of the drug, since (once approved), continuing patients on the drug meant more revenue. But he added that data would accrue with what happened to patients who elected to stop taking the drug as opposed to those who stayed on it. He added that it would be useful to know whether the sponsor would allow patients who went off the drug to start again if their tumors returned. He said he would check on that. But first, we need to get to CR.
As usual, the actual infusion was straightforward. The clinical trial nurse suggested that I can avoid the long wait if I have my lab work done at a local lab the day before. I'll taker up on that, I think.
Meanwhile, yesterday was the third year year anniversary that I learned that my cancer had metastasized outside of my bladder. The Kaplan-Meier survival curve for metastatic bladder cancer is grim. The NCI publishes measures of cancer survival using its SEER software, and probing it for mets BC data is depressing. Suffice it to say that historical data show that, five years after a mets diagnosis, fewer than 10% of patients are alive. In fact, a 2011 British study found that fewer that 25% of patients diagnosed with T4 bladder cancer were alive 30 months after diagnosis. So my hitting the three years mark is reason to celebrate!
More importantly, these data are historical. They do not take into account the development of immunotherapy treatments such as nivolumab or MPDL3280A. I'm hoping that these new drugs are game-changers, and five years from now we'll be celebrating a much higher survival rate which, God willing, will include me.
In the interim, I visited with Dr. Hahn. He said how three new patients had mentioned my blog regarding the nivolumab clinical trial and wanted in. He was delighted that word was getting out, and was happy with my evangelizing. I should send him a bill for my time.
I asked if he had further thoughts on the duration of my getting the drug, should I achieve complete recovery (CR). He said that it was not something that was spelled out in the clinical trial documents, but rather was an issue to be decided between patient and doctor. One view was that patients should continue with therapy if it appeared to be working and doing no harm. But once a patient has achieved CR, there is no reliable way to measure whether there is ongoing benefit to receiving the therapy. So the other view was that, if there was no way to measure whether the therapy was working, it should not be continued.
Since there is virtually no data on whether patients with metastatic bladder cancer continue to benefit by receiving nivolumab after CR, there is no informed basis to make a decision one way or the other. Dr. Hahn suggested that the drug company might not want to discourage patients from ending the use of the drug, since (once approved), continuing patients on the drug meant more revenue. But he added that data would accrue with what happened to patients who elected to stop taking the drug as opposed to those who stayed on it. He added that it would be useful to know whether the sponsor would allow patients who went off the drug to start again if their tumors returned. He said he would check on that. But first, we need to get to CR.
As usual, the actual infusion was straightforward. The clinical trial nurse suggested that I can avoid the long wait if I have my lab work done at a local lab the day before. I'll taker up on that, I think.
Meanwhile, yesterday was the third year year anniversary that I learned that my cancer had metastasized outside of my bladder. The Kaplan-Meier survival curve for metastatic bladder cancer is grim. The NCI publishes measures of cancer survival using its SEER software, and probing it for mets BC data is depressing. Suffice it to say that historical data show that, five years after a mets diagnosis, fewer than 10% of patients are alive. In fact, a 2011 British study found that fewer that 25% of patients diagnosed with T4 bladder cancer were alive 30 months after diagnosis. So my hitting the three years mark is reason to celebrate!
More importantly, these data are historical. They do not take into account the development of immunotherapy treatments such as nivolumab or MPDL3280A. I'm hoping that these new drugs are game-changers, and five years from now we'll be celebrating a much higher survival rate which, God willing, will include me.
Saturday, April 4, 2015
Mets Day 1088: A reluctance to lift my eyes
For the past three years, I have limited my life horizon to a three month window until the next scan. I knew that over 90% of patients with metastatic bladder cancer die within five years of diagnosis. Knowing that my metastatic bladder cancer could (and very likely would) explode anywhere in my body without notice or detection until the next scan, I found that focusing on the here and now was far better than worrying about what the next scan might reveal. The next scan might require me to plunge back into chemotherapy, or some other treatment, or be a harbinger of my imminent demise. I accepted that I could not control the course of my cancer, and through that acceptance learned to live one day at a time.
A consequence of that state of mind was that I declined to make firm plans after the next scan, and generally avoided thinking more than a couple of months into the future. I accepted that the next scan might require me to fundamentally change my course of treatment, or signal that my demise was much more imminent. My life's planning period was telescoped into the next three months. I would not buy nonrefundable airline tickets beyond the next scan (except for Southwest, which has no change fees). I would not project hope towards distant events, such as a graduation of child, or that I might see my children marry. Instead, this day -- the current day -- was where I tried to keep my concentration.
This focus on the present had unexpected benefits. The idea of exercise for my long-term health went out the window (not that I did a lot of it before cancer). I now had a much better excuse for exercise avoidance: no amount of jogging or cardio was going to change the fact that I had terminal cancer. I was more willing to indulge in dessert (not that I needed additional prompting), since there was no evidence that drinking asparagus smoothies or eating kelp (or whatever the fad of the moment was) would in any way affect the course of my disease. I didn't have to worry about saving for retirement, or global warming, or any other long-term event. Politics became less interesting; I stopped caring about who would be elected president in 2016.
Now, however, I'm beginning to wonder if I should maintain this viewpoint. The news from last week's scan strongly suggests that my metastatic cancer is shrinking, at least for now, as a result of the experimental treatment with nivolumab. I know that these results are preliminary, and that there is no basis to predict how long these results might last. We simply don't have the data. That's why I and hundreds of others are in this clinical trial: to find out just what this drug does to people with metastatic cancer, and whether it is a temporary effect, or perhaps longer lasting.
The FDA has not approved a new drug for metastatic bladder cancer for more than 20 years. Hundreds of drugs have been tested, and none have had any proven beneficial effect. Bladder cancer is an especially tricky beast, with a number of mutations and a tenacious adaptability. I'm hoping that nivolumab might break this drought, but past experience suggests caution.
So what does that mean to my life orientation? Do I begin to lift my eyes up from my three month horizon? Do I begin to hope that I will be able to see my son graduate from high school in 14 months? Can I reasonably hope to see the college graduations of Spencer, then Kirsten, and eventually Garrett? Will I be able to share in the joys and sorrows as Garrett labors though his volunteer missionary service for our church? Do I allow myself to contemplate what if I live long enough to see all my children married? Do I permit myself to contemplate growing old with Jennifer?
For three years, I have steadfastly avoided such thoughts. I found that, if I fondled distant hopes that I was highly unlikely to witness in my mortal existence, I would be filled with sorrow. Early in the Shawshank Redemption, Red told Andy, "Hope is a dangerous thing. Hope can drive a man insane." After my mets diagnosis, I understood why holding such long-term hopes could contribute to dangerous thoughts, anger, and a loss of faith. By contrast, at the end of the movie, Andy writes to Red, "hope is a good thing, maybe the best of things, and no good thing ever dies." And there it is: when can hope triumph over death?
I now find myself somewhere between Red and Andy. I would like to hope that the nivolumab will prolong my life, and let me look forward to events more than three months in the future. But I am not yet willing to plunge into that dangerous whorl of hopes for my future mortality. The transition from BC (before cancer) to AC was wrenching enough. I do not yet have enough empirical basis to believe that I might be in that 5% of metastatic bladder cancer patients who make it to the five year mark, let alone far beyond that.
From time to time, the New York Times has carried a series called "Life, Interrupted" by Suleika Jaouad, who chronicled her journey with leukemia starting at age 22. Her latest column discussed her fumbling with the transition from active cancer patient to former cancer patient. She wrote that,
"in some ways the hardest part of my cancer experience began once the cancer was gone." Her realization that she could never go back the the person she was before cancer, coupled with the complications of her treatments, prompted her to wonder about her life foundations.
On Friday, Jennifer and I went to the Ft. Lauderdale LDS temple and spent some time contemplating matters of eternity. On the drive down and back, we discussed whether the news of the recent scan should alter our life plans in any way. Could we start thinking about the possibility of having many more years together, instead of anticipating my premature death? Could we reasonably think about an empty nest in two or three years, and where we might live, and what we might do? Could we think about reopening the doors behind which we had stored our ideas for growing old together? We peered into those dusty dreams, had a long and thoughtful discussion, then decided, not yet. Not yet.
A consequence of that state of mind was that I declined to make firm plans after the next scan, and generally avoided thinking more than a couple of months into the future. I accepted that the next scan might require me to fundamentally change my course of treatment, or signal that my demise was much more imminent. My life's planning period was telescoped into the next three months. I would not buy nonrefundable airline tickets beyond the next scan (except for Southwest, which has no change fees). I would not project hope towards distant events, such as a graduation of child, or that I might see my children marry. Instead, this day -- the current day -- was where I tried to keep my concentration.
This focus on the present had unexpected benefits. The idea of exercise for my long-term health went out the window (not that I did a lot of it before cancer). I now had a much better excuse for exercise avoidance: no amount of jogging or cardio was going to change the fact that I had terminal cancer. I was more willing to indulge in dessert (not that I needed additional prompting), since there was no evidence that drinking asparagus smoothies or eating kelp (or whatever the fad of the moment was) would in any way affect the course of my disease. I didn't have to worry about saving for retirement, or global warming, or any other long-term event. Politics became less interesting; I stopped caring about who would be elected president in 2016.
Now, however, I'm beginning to wonder if I should maintain this viewpoint. The news from last week's scan strongly suggests that my metastatic cancer is shrinking, at least for now, as a result of the experimental treatment with nivolumab. I know that these results are preliminary, and that there is no basis to predict how long these results might last. We simply don't have the data. That's why I and hundreds of others are in this clinical trial: to find out just what this drug does to people with metastatic cancer, and whether it is a temporary effect, or perhaps longer lasting.
The FDA has not approved a new drug for metastatic bladder cancer for more than 20 years. Hundreds of drugs have been tested, and none have had any proven beneficial effect. Bladder cancer is an especially tricky beast, with a number of mutations and a tenacious adaptability. I'm hoping that nivolumab might break this drought, but past experience suggests caution.
So what does that mean to my life orientation? Do I begin to lift my eyes up from my three month horizon? Do I begin to hope that I will be able to see my son graduate from high school in 14 months? Can I reasonably hope to see the college graduations of Spencer, then Kirsten, and eventually Garrett? Will I be able to share in the joys and sorrows as Garrett labors though his volunteer missionary service for our church? Do I allow myself to contemplate what if I live long enough to see all my children married? Do I permit myself to contemplate growing old with Jennifer?
For three years, I have steadfastly avoided such thoughts. I found that, if I fondled distant hopes that I was highly unlikely to witness in my mortal existence, I would be filled with sorrow. Early in the Shawshank Redemption, Red told Andy, "Hope is a dangerous thing. Hope can drive a man insane." After my mets diagnosis, I understood why holding such long-term hopes could contribute to dangerous thoughts, anger, and a loss of faith. By contrast, at the end of the movie, Andy writes to Red, "hope is a good thing, maybe the best of things, and no good thing ever dies." And there it is: when can hope triumph over death?
I now find myself somewhere between Red and Andy. I would like to hope that the nivolumab will prolong my life, and let me look forward to events more than three months in the future. But I am not yet willing to plunge into that dangerous whorl of hopes for my future mortality. The transition from BC (before cancer) to AC was wrenching enough. I do not yet have enough empirical basis to believe that I might be in that 5% of metastatic bladder cancer patients who make it to the five year mark, let alone far beyond that.
From time to time, the New York Times has carried a series called "Life, Interrupted" by Suleika Jaouad, who chronicled her journey with leukemia starting at age 22. Her latest column discussed her fumbling with the transition from active cancer patient to former cancer patient. She wrote that,
"in some ways the hardest part of my cancer experience began once the cancer was gone." Her realization that she could never go back the the person she was before cancer, coupled with the complications of her treatments, prompted her to wonder about her life foundations.
On Friday, Jennifer and I went to the Ft. Lauderdale LDS temple and spent some time contemplating matters of eternity. On the drive down and back, we discussed whether the news of the recent scan should alter our life plans in any way. Could we start thinking about the possibility of having many more years together, instead of anticipating my premature death? Could we reasonably think about an empty nest in two or three years, and where we might live, and what we might do? Could we think about reopening the doors behind which we had stored our ideas for growing old together? We peered into those dusty dreams, had a long and thoughtful discussion, then decided, not yet. Not yet.
I am not at the point where I can think of myself as a former cancer patient. Yet. Yet: the mere fact that I can add "yet" is a shaft of sunlight on an otherwise terminal horizon. It is hope, and it is a dangerous thing. I am not yet ready to give into that hope that I might have years, instead of months, of mortality. Yet on this Easter weekend, what better time could there be for the promise of hope: it is sown in corruption; it is raised in incorruption: it is sown in dishonor; it is raised in glory: it is sown in weakness; it is raised in power: it is sown a natural body; it is raised a spiritual body.
Friday, April 3, 2015
Mets Day 1086: Second supplemental scan results
This morning Hopkins posted a third interpretation of my scan results. This one focused on my supraclavicular nodes -- the original location of my metastatic cancer that was first detected in August 2013. Perhaps this report was triggered by my question to Dr. Le on Monday about the size of that node, which she was unable to answer because she could not pull up that scan. My January 2015 scan at NIH showed that the nodes in the area had begun to merge together. The 2/10/15 baseline scan at Hopkins described this node cluster as a single node: "There is a lymph node lateral to the jugular vein at the level of the clavicular head seen on series 6 slice 74 which measures approximately 2.5 cm in transverse dimension."
Yesterday's report focused on that node cluster. The radiologist went back to the 2/10/15 scan and tried to measure the two nodes separately, and concluded that short axis measurement of one was 12 mm, and other other was 11 mm. The radiologist then compared those nodes to my 3/24 scan, and concluded that the 12 mm node had shrunk to 6 mm, and the 11 mm node had shrunk to 8 mm. Good news on Good Friday!
Yesterday's report focused on that node cluster. The radiologist went back to the 2/10/15 scan and tried to measure the two nodes separately, and concluded that short axis measurement of one was 12 mm, and other other was 11 mm. The radiologist then compared those nodes to my 3/24 scan, and concluded that the 12 mm node had shrunk to 6 mm, and the 11 mm node had shrunk to 8 mm. Good news on Good Friday!
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