I recently finished reading a book by an MD named Paul A. Offit, titled "Do You Believe In Magic? The Sense and Nonsense of Alternative Medicine". Dr. Offit is a vigorous advocate of evidence-based medicine, and says that there is no such thing as alternative medicine. Instead, he says there is only medicine that has been proven to work (of which he is a strong advocate), and medicine that doesn't.
Dr. Offit savages celebrity-driven nontraditional "cures", repeatedly demonstrating how supposed "treatments" pitched by idiots such as Suzanne Somers, Jenny McCarthy, and Mehmet Oz are ineffective and even dangerous. He debunks the megavitamin movement, citing dozens of studies. Of the 51,000 or so different types of herbal supplements on the market, he says that perhaps four have been shown to actually have a beneficial effect. He tears apart the charlatans who claim that they can cure cancer through any number of unproven treatments, sucking tens of thousands of dollars from families seeking hope in the face of death.
He looks at a number of alternative medical approaches, and acknowledges that some studies have shown that there can be a positive effect from things like acupuncture or "new age" medicines or "Vitamin O" (a type of salt) or the like. He attributes those positive effects to the placebo effect: For example, numerous studies have shown that people who think they are getting acupuncture but instead have had retractable needles that don't penetrate skin report the same level of positive results as those who had real acupuncture. Not surprisingly, studies have shown that, if you put someone in a calm environment with soothing music and someone uttering comfortable words, they are calmer, regardless of whether they are handling crystals or synchronizing their energies or whatever.
Although Dr. Offit lumps prayer into his collection of unproven medical treatments, he doesn't spend much time attacking people of faith. Probably a smart move on his part, since a wide majority of Americans believe in an omnipotent God. I do. As I read Offit's book, I paused to consider the question of whether I equated faith in God with magic. I readily acknowledge that religious faith is non-rational, that is, matters of faith are not susceptible to traditional scientific proofs. It's called faith for a reason.
The difference is that I do not regard my faith in God to be a substitute for working with doctors on a treatment for my cancer. God gave us brains and the ability to use them for a reason, and so we should. Jennifer and I pray daily that my cancer will not spread, and that my days of mortality can be prolonged, as long as it is consistent with His will. The hand of the Lord is evidenced in many ways, most especially through the actions of others -- including my doctors. In no way is my faith an alternative treatment for my cancer. My faith guides me in all of my actions, and my health care is one small portion of that.
I understand how a nonbeliever can dismiss religious faith as a form of magic. For Dr. Offit, the key distinction appears to be that as long as a patient's faith does not impede the pursuit of evidence-based medicine, then a patient can do whatever he or she wants. I know that I have received great comfort from my faith, and that I have been better able to bear the burdens of my disease with the belief that there is a God who know me, cares for me, and loves me as His own son.
Wednesday, January 29, 2014
Monday, January 27, 2014
Mets Day 656 - How long have I got left?
Yesterday I saw an opinion piece in the New York Times titled How Long Have I Got Left? It's well worth reading. Go ahead, click on the link, read it, then come back.
If you don't want to bother with reading it, it's written by a 36 year old neurosurgeon named Paul Kalanithi who was diagnosed with lung cancer. He noted his professional detachment when looking at other similar cases, and contrasted it with his desire to know how long he had to live. He spoke about survival curves, how they were a historical snapshot of others with the disease, how useless they were in making patient-specific projections, and how his own oncologist refused to tell him how long he had left, because no one could say. He reflected on the desire for certainty, and how such knowledge would help him decide how to live his life. Without such knowledge, he learned to live by the words of Samuel Beckett: "I can't go on. I'll go on."
Kalanthi's op ed piece reminded me of my ongoing struggle to decide what I should do with my remaining days. I reflected how, for a short period of time, I had wished I knew exactly how long I had to live. Even before I learned that my cancer had metastasized, I knew that, if it did, the odds of long-term survival (e.g., more than 5 years) were less than 10%. I also had studied the Kaplan-Meier curves for metastatic bladder cancer. A good summary of the studies with their respective curves can be found in the National Cancer Center's PDQ for Stage IV Bladder Cancer. Other examples can be found in various journals, such as Prognosis of muscle-invasive bladder cancer: difference between primary and progressive tumours and implications for therapy and Long-Term Survival Results of a Randomized Trial Comparing GemCis, With MVAC in Patients With Bladder Cancer.
After I reviewed this data in April 2012, I understood that no one would be able to tell me how long I had to live. I understood that doctors simply did not have the ability to provide a forward-looking, patient-specific prediction. The survival curves were nothing more than reference points. I accepted the limitations of today's doctors, and also accepted that there is no cure for mets BC. Treatment is focused solely upon prolonging life, while balancing the harshness of the palliative therapies against the potential benefit of buying a few more months.
My acceptance of things that I cannot control has brought tremendous peace to me. I can no better stop my cancer than I can stop the flow of the tides. With that acceptance, I have learned to live each day for what it is; giving thanks for each morning; enjoying what I can during the day; and giving thanks when I lay down to sleep.
While reading Kalanithi's piece, I thought of Paul Atredies, the protaganist from Frank Herbert's Dune Trilogy, who became prescient and knew all that was going to happen to everyone in the universe, including himself. His certainty of the future created a sense of despair from which he sought to escape. Those who seek a perfect knowledge of the future should beware of obtaining what they seek.
I am grateful that my mortality is shrouded in ambiguity. I do not want to know how long I will live, or the choices I will make next week or next month. My agency is defined by the freedom to choose, to define my own path, guided by my commitments to family, friends, and faith. Unlike Kalanithi (and especially Beckett), I have not felt that "I can't go on." The joyous mystery of life, and of death, lies in the fact that what happens next is unknown.
If you don't want to bother with reading it, it's written by a 36 year old neurosurgeon named Paul Kalanithi who was diagnosed with lung cancer. He noted his professional detachment when looking at other similar cases, and contrasted it with his desire to know how long he had to live. He spoke about survival curves, how they were a historical snapshot of others with the disease, how useless they were in making patient-specific projections, and how his own oncologist refused to tell him how long he had left, because no one could say. He reflected on the desire for certainty, and how such knowledge would help him decide how to live his life. Without such knowledge, he learned to live by the words of Samuel Beckett: "I can't go on. I'll go on."
Kalanthi's op ed piece reminded me of my ongoing struggle to decide what I should do with my remaining days. I reflected how, for a short period of time, I had wished I knew exactly how long I had to live. Even before I learned that my cancer had metastasized, I knew that, if it did, the odds of long-term survival (e.g., more than 5 years) were less than 10%. I also had studied the Kaplan-Meier curves for metastatic bladder cancer. A good summary of the studies with their respective curves can be found in the National Cancer Center's PDQ for Stage IV Bladder Cancer. Other examples can be found in various journals, such as Prognosis of muscle-invasive bladder cancer: difference between primary and progressive tumours and implications for therapy and Long-Term Survival Results of a Randomized Trial Comparing GemCis, With MVAC in Patients With Bladder Cancer.
After I reviewed this data in April 2012, I understood that no one would be able to tell me how long I had to live. I understood that doctors simply did not have the ability to provide a forward-looking, patient-specific prediction. The survival curves were nothing more than reference points. I accepted the limitations of today's doctors, and also accepted that there is no cure for mets BC. Treatment is focused solely upon prolonging life, while balancing the harshness of the palliative therapies against the potential benefit of buying a few more months.
My acceptance of things that I cannot control has brought tremendous peace to me. I can no better stop my cancer than I can stop the flow of the tides. With that acceptance, I have learned to live each day for what it is; giving thanks for each morning; enjoying what I can during the day; and giving thanks when I lay down to sleep.
While reading Kalanithi's piece, I thought of Paul Atredies, the protaganist from Frank Herbert's Dune Trilogy, who became prescient and knew all that was going to happen to everyone in the universe, including himself. His certainty of the future created a sense of despair from which he sought to escape. Those who seek a perfect knowledge of the future should beware of obtaining what they seek.
I am grateful that my mortality is shrouded in ambiguity. I do not want to know how long I will live, or the choices I will make next week or next month. My agency is defined by the freedom to choose, to define my own path, guided by my commitments to family, friends, and faith. Unlike Kalanithi (and especially Beckett), I have not felt that "I can't go on." The joyous mystery of life, and of death, lies in the fact that what happens next is unknown.
Thursday, January 23, 2014
Mets Day 652 - The heart of life
Today I went to GW for a sonogram of my heart, and a test for the pulmonary function of my lungs. These tests are intended to assess whether either my heart or lungs have been damaged by the ddMVAC chemotherapy, or have some other impairment unrelated to my cancer treatments. I assume that I'll get the results in a few days. Hopefully everything will check out.
Meanwhile, I've been trying to figure out what, if anything, I should be doing differently as a result of the scan earlier this month that showed that my mets were stable. On the one hand, I can look forward to two or three months where I will be spared from any further therapy. On the other hand, I know that it is virtually certain that at some point my cancer will continue to spread. It's hard to make any plans for more than two or three months, because I could have a scan in April that shows additional growth, and then I'll have to decide what treatments I'll have, if any.
I understand that more than 95% of patients with metastatic bladder cancer die from the disease within 5 years. In fact, the median time of death is around 18 months. I'm already past that point. As time goes on, I know that the odds that my cancer will spread will continue to increase. I accept that I have no control over the prognosis of the disease. I have found that my acceptance of that fact has freed me from worrying about the very high likelihood that in the next three years or so, I will die of metastatic bladder cancer. If it happens, it happens. As Kahil Gibran wrote,
You would know the secret of death.
But how shall you find it unless you seek it in the heart of life?
The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.
If you would indeed behold the spirit of death, open your heart wide unto the body of life.
For life and death are one, even as the river and the sea are one.
In the depth of your hopes and desires lies your silent knowledge of the beyond;
And like seeds dreaming beneath the snow your heart dreams of spring.
Trust the dreams, for in them is hidden the gate to eternity.
Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honour.
Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king?
Yet is he not more mindful of his trembling?
For what is it to die but to stand naked in the wind and to melt into the sun?
And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?
Only when you drink from the river of silence shall you indeed sing.
And when you have reached the mountain top, then you shall begin to climb.
And when the earth shall claim your limbs, then shall you truly dance.
While I live, I hope to spend my days well. From now until mid-May, Jennifer and I have committed to care for our granddaughter while Chelsea finishes medical school, and Josh works. I can think of few ways to better spend my time than helping my family, and caring for my granddaughter. In that way, I think I have found the heart of life.
Meanwhile, I've been trying to figure out what, if anything, I should be doing differently as a result of the scan earlier this month that showed that my mets were stable. On the one hand, I can look forward to two or three months where I will be spared from any further therapy. On the other hand, I know that it is virtually certain that at some point my cancer will continue to spread. It's hard to make any plans for more than two or three months, because I could have a scan in April that shows additional growth, and then I'll have to decide what treatments I'll have, if any.
I understand that more than 95% of patients with metastatic bladder cancer die from the disease within 5 years. In fact, the median time of death is around 18 months. I'm already past that point. As time goes on, I know that the odds that my cancer will spread will continue to increase. I accept that I have no control over the prognosis of the disease. I have found that my acceptance of that fact has freed me from worrying about the very high likelihood that in the next three years or so, I will die of metastatic bladder cancer. If it happens, it happens. As Kahil Gibran wrote,
You would know the secret of death.
But how shall you find it unless you seek it in the heart of life?
The owl whose night-bound eyes are blind unto the day cannot unveil the mystery of light.
If you would indeed behold the spirit of death, open your heart wide unto the body of life.
For life and death are one, even as the river and the sea are one.
In the depth of your hopes and desires lies your silent knowledge of the beyond;
And like seeds dreaming beneath the snow your heart dreams of spring.
Trust the dreams, for in them is hidden the gate to eternity.
Your fear of death is but the trembling of the shepherd when he stands before the king whose hand is to be laid upon him in honour.
Is the shepherd not joyful beneath his trembling, that he shall wear the mark of the king?
Yet is he not more mindful of his trembling?
For what is it to die but to stand naked in the wind and to melt into the sun?
And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?
Only when you drink from the river of silence shall you indeed sing.
And when you have reached the mountain top, then you shall begin to climb.
And when the earth shall claim your limbs, then shall you truly dance.
While I live, I hope to spend my days well. From now until mid-May, Jennifer and I have committed to care for our granddaughter while Chelsea finishes medical school, and Josh works. I can think of few ways to better spend my time than helping my family, and caring for my granddaughter. In that way, I think I have found the heart of life.
Wednesday, January 15, 2014
Mets Day 644: Q&A with someone new to Stage IV
I recently exchanged the following emails with someone who came across some of my posts. I am re-posting this exchange (edited to delete names and other identifying info) in the hope that others in a similar situation might find it beneficial.
The initial email to me said:
I also have urothelial carcinoma. I had my bladder removed in mid-2011. I did neoadjuvant chemotherapy with cisplatin. They just found a lymph node with cancer and I've been diagnosed with stage IV bladder cancer. They are recommending MVAC.
I responded with the following:
Thanks for the note. I'm sorry to hear about your Dx. I have a couple of questions and comments:
1. Have you been seen by a major cancer center? Getting their input is very important. Where are you at, geographically? I can give you contact info for cancer centers in DC, Baltimore, Philly, Chicago, and Houston.
2. I understand that you've had an RC and had neoadjuvant chemo, and are now faced with salvage chemo, and MVAC is being recommended. As you know from my blog, I faced the same thing 6 months ago. I consulted with doctors at Fox Chase, U. Chicago, NIH, and GW re my treatment options. Because my node was under 1.5 cm on the short axis, I did not qualify for any clinical trial. If your mets node is larger than that, then you may qualify for a trial. There are some very provocative things going on with gene therapy. If a trial is an option, then I'd get together with a major cancer center and review the options available to you. For me, because a trial was not (yet) available, the question for my doctors was whether to have salvage chemo or not. NIH and GW recommended dose dense MVAC. They said that it was more successful and less toxic than regular MVAC. In my posts of September 2013, I explored the pros and cons of ddMVAC. Talk with your doc about ddMVAC, as opposed to regular MVAC.
3. Are you the kind of person who wants to learn as much as you can, or would you rather do what your doctor says without any second guessing? I'm the former, but my docs told me that I was the exception to the rule. I think it's important to be well-informed, but also know your source. Pay no attention to anything you hear from your well-meaning family and friends, or read on-line (including what I say), unless you can independently verify it by a trusted source. This is especially true for alternative cancer therapies. That being said, you are your own best advocate, and should be comfortable with what is being done to you.
4. Stage IV BC will almost certainly kill you, as it will me. The question is how aggressive you want to be to prolong your life. Virtually all of the pain, suffering, and discomfort that you are going to experience will be the effects of the treatments, and not the cancer itself. Treatments can double your remaining life (or more), but there is a cost to quality of life. Only you can decide whether the impairment of the quality of life is worth the cost.
5. My faith has helped me immensely. If you have a church group, draw them in. Family is a tremendous comfort, too. I found that BC clarified my priorities and strengthened my relationship with my family, and with God. In that way, it has been a blessing.
I received the following response:
Thanks for your responses regarding my situation. What were the side effects while taking ddMVAC and how long did you take it?
I replied as follows:
From
what I read and my docs told me, ddMVAC is significantly less toxic
that regular MVAC. I summarized some of the studies comparing ddMVAC to
regular MVAC in my Sept. 16 blog, http://kwbcancerblog.blogspot.com/2013/09/mats-day-522-my-gw-oncologist-says-to.html.
My follow-up posts in later September contain more info about the pros
and cons of ddMVAC. For me, the question was never between regular MVAC
and ddMVAC, since the data clearly favored ddMVAC, and my docs never
recommended regular MVAC. The issue for me was ddMVAC or nothing. It
was a tough call, and my pulling the plug on it after three rounds
reflected my lack of total commitment to it. It's an individual
decision, and I can't tell you what you should do. All I can do is
share my experience, and hope it helps.
I received the following response:
You have been a tremendous help in making this important life decision. Thank you so much.
The initial email to me said:
I also have urothelial carcinoma. I had my bladder removed in mid-2011. I did neoadjuvant chemotherapy with cisplatin. They just found a lymph node with cancer and I've been diagnosed with stage IV bladder cancer. They are recommending MVAC.
I responded with the following:
Thanks for the note. I'm sorry to hear about your Dx. I have a couple of questions and comments:
1. Have you been seen by a major cancer center? Getting their input is very important. Where are you at, geographically? I can give you contact info for cancer centers in DC, Baltimore, Philly, Chicago, and Houston.
2. I understand that you've had an RC and had neoadjuvant chemo, and are now faced with salvage chemo, and MVAC is being recommended. As you know from my blog, I faced the same thing 6 months ago. I consulted with doctors at Fox Chase, U. Chicago, NIH, and GW re my treatment options. Because my node was under 1.5 cm on the short axis, I did not qualify for any clinical trial. If your mets node is larger than that, then you may qualify for a trial. There are some very provocative things going on with gene therapy. If a trial is an option, then I'd get together with a major cancer center and review the options available to you. For me, because a trial was not (yet) available, the question for my doctors was whether to have salvage chemo or not. NIH and GW recommended dose dense MVAC. They said that it was more successful and less toxic than regular MVAC. In my posts of September 2013, I explored the pros and cons of ddMVAC. Talk with your doc about ddMVAC, as opposed to regular MVAC.
3. Are you the kind of person who wants to learn as much as you can, or would you rather do what your doctor says without any second guessing? I'm the former, but my docs told me that I was the exception to the rule. I think it's important to be well-informed, but also know your source. Pay no attention to anything you hear from your well-meaning family and friends, or read on-line (including what I say), unless you can independently verify it by a trusted source. This is especially true for alternative cancer therapies. That being said, you are your own best advocate, and should be comfortable with what is being done to you.
4. Stage IV BC will almost certainly kill you, as it will me. The question is how aggressive you want to be to prolong your life. Virtually all of the pain, suffering, and discomfort that you are going to experience will be the effects of the treatments, and not the cancer itself. Treatments can double your remaining life (or more), but there is a cost to quality of life. Only you can decide whether the impairment of the quality of life is worth the cost.
5. My faith has helped me immensely. If you have a church group, draw them in. Family is a tremendous comfort, too. I found that BC clarified my priorities and strengthened my relationship with my family, and with God. In that way, it has been a blessing.
I received the following response:
Thanks for your responses regarding my situation. What were the side effects while taking ddMVAC and how long did you take it?
I replied as follows:
I
did three rounds of ddMVAC. Each round lasts two weeks. I blogged
about what it involves and the side effects. See my entries in
September and October 2013, starting at http://kwbcancerblog.blogspot.com/2013/09/mets-day-530-ddmvac-day-1.html.
The ddMVAC chemo was much harder than GemCis. Each dose wiped me out
for 7-10 days. Total fatigue, GI tract thrashed, mouth sores, total
hair loss, some neuropathy in my feet, and shortness of breath. Nausea
was kept in check with anti-emetics. My NIH doctor told me that "I
tolerated the chemo well", which was news to me. She pointed out that I
did not require hospitalization or transfusions, which about 35-50% of
ddMVAC patients do. Apparently, the older the patient, the greater the
risks (I'm 51, so I'm at the younger end of the BC spectrum). I pulled
the plug after 3 rounds of ddMVAC (the original plan was 6 rounds),
because I felt the side effects were not worth the potential benefits.
Two and a half months after I stopped it, I've got no further growth of
the mets in my neck. My docs can't say for sure if it was due to the
ddMVAC or maybe that's what would have happened anyway, but right now
I'm taking a wait-and-see approach.
I received the following response:
You have been a tremendous help in making this important life decision. Thank you so much.
Friday, January 10, 2014
Mets Day 639 - Talking with my doc about this week's scan
This afternoon Jennifer and I met with my oncologist, Dr. Aragon-Ching, to discuss last Tuesday's scan, and to consider my treatment options. We had the misfortune of having an afternoon appointment, and ended up waiting for two hours after after our appointment time -- an unusually long wait even for GW. While waiting, I had my blood drawn and labs run, and all my counts were fine.
When we were finally joined by the doctor, she gave us a copy of the NIH scan report. It found an "unchanged 0.8 cm left sub clavicular nodule partially imaged on the first slice." The lungs were clear, and everything else in the abdomen was "unremarkable." Dr. Aragon-Ching said that this report was the best news that she could expect. She said that there was no way to know if the cancer stopped progressing because of the ddMVAC chemotherapy, or if would have done that anyway. However, she was inclined to believe that the chemo had some effect, because this scan again measured the node at .8 cm, which was slightly smaller than the pre-chemo scans. This suggested that the chemo may have caused the metastatic cancer to not only stop growing, but to slightly recede. She also said that it was unlikely that more chemo would have caused the cancer to shrink any more, so stopping the chemo after three rounds was a good call: I was able to enjoy the cruise and the holidays chemo-free, and didn't give anything up by not doing the last three rounds.
Dr. Aragon-Ching recommended that, for now, I not resume ddMVAC or have any other therapy. Instead, she recommended that I have regular scans (every 2-3 months) and monitor my mets, and wait and see if it starts to spread. It's highly likely to do so -- spreading is what this type of cancer likes to do -- but until it does, she saw no need to subject me to any further treatments. She reiterated how all of my treatments are not intended to be curative (because doctors don't know how to cure metastatic bladder cancer), but are intended to be palliative by helping to perhaps slow the progress while easing my discomfort. Ironically, through my entire cancer journey, all of my discomfort has been caused by the side effects of my cancer treatments: the first round of chemo; the recovery from surgery and my continuing efforts to manage my neobladder; and the nadir of the ddMVAC chemo.
Another benefit of not having had all six rounds of ddMVAC chemo, my doctor said, was that, if and when the cancer resumes spreading, we can go back to ddMVAC again, and see if it will work a second time. She observed that, even though the ddMVAC chemo wiped me out with overwhelming fatigue, I never reached the limits of toxicity. That option likely would not be available if I had done all six rounds, since I'd probably have reached maximum cumulative toxicity. I was happy to defer the thought of further chemo into the undefined future.
I asked about the lingering effects of the chemotherapy. I noted how my feet get colder faster, and take longer to warm up. I've especially noticed this at night. While I was in the middle of chemo, I sometimes would alternate holding the heating pad on my abdomen, and my feet. I have not needed a heating pad on my abdomen since I ended ddMVAC, but my feet feel like blocks of ice at night -- far different than before the ddMVAC chemo. Dr. Aragon-Ching said that cold feet is a type of neuropathy, a known side effect of ddMVAC chemo. She said that, of the 5% or so of patients who have neuropathy, sometimes it is very painful, such as persistent pins and needles, or stabbing pains. She said that some patients with neuropathy see the symptoms lessen over time, but most of the time it is a permanent shift. I guess I'll live with it -- especially if Jennifer continues to let me warm up my icy feet on her. :)
More importantly, I am concerned about the ongoing shortness of breath that I routinely experience whenever I exert myself. For example, yesterday I carried two boxes of Christmas decorations down to the basement, and was sucking air after the second box. That's way out of character for me. After a bit of snow fell over the holidays, I was gasping after a few minutes of pushing snow with a shovel. Dr. Aragon-Ching initially guessed that it was a lack of conditioning, but I knew it was something more -- it's like my lungs could not exchange enough oxygen. She observed that, in rare cases, the adriamycin (the "A" in MVAC) can affect the heart. Even less common is the risk of PE, or pulmonary embolism, which is a blockage of the main artery of the lung by a blood clot. She ordered a couple of tests -- an echocardiogram to check my heart, and a ventilation/perfusion scan (v/q scan) to check the circulation of air and blood in my lungs. I'm scheduled to have both of those scans on January 23. If anything suspicious is found, she'll go forward with a full-contrast CT scan. In the meantime, she encouraged me to slowly ease back into some regular physical activity.
She also renewed my prescriptions for Ambien CR and Lunesta, which I usually alternate taking each night to help me sleep through my unpredictable nocturnal incontinence.
After we were done, she had me go over to the infusion lab so my port could be flushed. It had been two months since it was accessed, and she did not want it to get blocked, like it did in 2012. That took another hour or so of waiting for a 30 second procedure. All in all, we were at the GW offices for nearly 4 hours. Jennifer and I had been expecting to go out to lunch after were were done; it turned into an early dinner.
On the drive home, we talked about what this means. It's obviously good news that the cancer has not spread, but we continue to understand that it continues to be a question of time. This scan alleviates short term concerns, but as John Meynard Keynes observed, in the long run we are all dead. I don't know how long my run will be, but give thanks that for now the sun is shining.
When we were finally joined by the doctor, she gave us a copy of the NIH scan report. It found an "unchanged 0.8 cm left sub clavicular nodule partially imaged on the first slice." The lungs were clear, and everything else in the abdomen was "unremarkable." Dr. Aragon-Ching said that this report was the best news that she could expect. She said that there was no way to know if the cancer stopped progressing because of the ddMVAC chemotherapy, or if would have done that anyway. However, she was inclined to believe that the chemo had some effect, because this scan again measured the node at .8 cm, which was slightly smaller than the pre-chemo scans. This suggested that the chemo may have caused the metastatic cancer to not only stop growing, but to slightly recede. She also said that it was unlikely that more chemo would have caused the cancer to shrink any more, so stopping the chemo after three rounds was a good call: I was able to enjoy the cruise and the holidays chemo-free, and didn't give anything up by not doing the last three rounds.
Dr. Aragon-Ching recommended that, for now, I not resume ddMVAC or have any other therapy. Instead, she recommended that I have regular scans (every 2-3 months) and monitor my mets, and wait and see if it starts to spread. It's highly likely to do so -- spreading is what this type of cancer likes to do -- but until it does, she saw no need to subject me to any further treatments. She reiterated how all of my treatments are not intended to be curative (because doctors don't know how to cure metastatic bladder cancer), but are intended to be palliative by helping to perhaps slow the progress while easing my discomfort. Ironically, through my entire cancer journey, all of my discomfort has been caused by the side effects of my cancer treatments: the first round of chemo; the recovery from surgery and my continuing efforts to manage my neobladder; and the nadir of the ddMVAC chemo.
Another benefit of not having had all six rounds of ddMVAC chemo, my doctor said, was that, if and when the cancer resumes spreading, we can go back to ddMVAC again, and see if it will work a second time. She observed that, even though the ddMVAC chemo wiped me out with overwhelming fatigue, I never reached the limits of toxicity. That option likely would not be available if I had done all six rounds, since I'd probably have reached maximum cumulative toxicity. I was happy to defer the thought of further chemo into the undefined future.
I asked about the lingering effects of the chemotherapy. I noted how my feet get colder faster, and take longer to warm up. I've especially noticed this at night. While I was in the middle of chemo, I sometimes would alternate holding the heating pad on my abdomen, and my feet. I have not needed a heating pad on my abdomen since I ended ddMVAC, but my feet feel like blocks of ice at night -- far different than before the ddMVAC chemo. Dr. Aragon-Ching said that cold feet is a type of neuropathy, a known side effect of ddMVAC chemo. She said that, of the 5% or so of patients who have neuropathy, sometimes it is very painful, such as persistent pins and needles, or stabbing pains. She said that some patients with neuropathy see the symptoms lessen over time, but most of the time it is a permanent shift. I guess I'll live with it -- especially if Jennifer continues to let me warm up my icy feet on her. :)
More importantly, I am concerned about the ongoing shortness of breath that I routinely experience whenever I exert myself. For example, yesterday I carried two boxes of Christmas decorations down to the basement, and was sucking air after the second box. That's way out of character for me. After a bit of snow fell over the holidays, I was gasping after a few minutes of pushing snow with a shovel. Dr. Aragon-Ching initially guessed that it was a lack of conditioning, but I knew it was something more -- it's like my lungs could not exchange enough oxygen. She observed that, in rare cases, the adriamycin (the "A" in MVAC) can affect the heart. Even less common is the risk of PE, or pulmonary embolism, which is a blockage of the main artery of the lung by a blood clot. She ordered a couple of tests -- an echocardiogram to check my heart, and a ventilation/perfusion scan (v/q scan) to check the circulation of air and blood in my lungs. I'm scheduled to have both of those scans on January 23. If anything suspicious is found, she'll go forward with a full-contrast CT scan. In the meantime, she encouraged me to slowly ease back into some regular physical activity.
She also renewed my prescriptions for Ambien CR and Lunesta, which I usually alternate taking each night to help me sleep through my unpredictable nocturnal incontinence.
After we were done, she had me go over to the infusion lab so my port could be flushed. It had been two months since it was accessed, and she did not want it to get blocked, like it did in 2012. That took another hour or so of waiting for a 30 second procedure. All in all, we were at the GW offices for nearly 4 hours. Jennifer and I had been expecting to go out to lunch after were were done; it turned into an early dinner.
On the drive home, we talked about what this means. It's obviously good news that the cancer has not spread, but we continue to understand that it continues to be a question of time. This scan alleviates short term concerns, but as John Meynard Keynes observed, in the long run we are all dead. I don't know how long my run will be, but give thanks that for now the sun is shining.
Thursday, January 9, 2014
Mets Day 638 - Good CT scan results
On Tuesday I had another CT scan at NIH. Tonight I received an email from Dr. Apolo indicating that my metastatic cancer was stable. No further growth or spreading since my last scan was detected. The enlarged node in my neck was .8 cm -- about the same size as last time. She did not mention any other areas of concern. Good news!
Tomorrow afternoon I will meet with Dr. Aragon-Ching, my oncologist at GW, to discuss whether further treatment is appropriate at this time. She has a copy of the scan results, and has spoken with Dr. Apolo. I'll add another post tomorrow summarizing where things stand.
At this point, I don't know what to expect regarding future treatment in the short term. Maybe nothing. Maybe more chemo (although I hope not). I doubt I'll be eligible for any clinical trials. At this point, I'm just relieved that my cancer hasn't spread any further.
Tomorrow afternoon I will meet with Dr. Aragon-Ching, my oncologist at GW, to discuss whether further treatment is appropriate at this time. She has a copy of the scan results, and has spoken with Dr. Apolo. I'll add another post tomorrow summarizing where things stand.
At this point, I don't know what to expect regarding future treatment in the short term. Maybe nothing. Maybe more chemo (although I hope not). I doubt I'll be eligible for any clinical trials. At this point, I'm just relieved that my cancer hasn't spread any further.
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