Five years ago today, I was diagnosed with bladder cancer.
My first blog post (which originally was an email to my family) is dated Nov. 22, 2011. Jennifer remembers 11/11/11 as the day I first saw blood in my urine. The events of the past five years have fundamentally changed my life, as I tumbled through the rabbit hole and into an existence dominated by taking exceptional measures to stay alive while simultaneously acknowledging the very high likelihood that I soon would be dead. I ceased my legal practice, rallied around my family, and drew closer to God.
I look back on the most significant decisions relating to my journey with cancer, and most predate my diagnosis and treatment. First and foremost was the decades of development of my spiritual faith that sustained me as I prepared to face death. I did not know fully understand how my religious life choices would pay off down the line, but I am most grateful that I filled that well before the drought.
From an economic standpoint, my decision in 2002 to listen to my insurance agent and purchase own occupation disability insurance has removed the necessity to try to continue to work while slogging through this never-ending battle. Those ongoing payments pursuant to the policies have made it possible for me to retire early and focus on my ongoing treatments and spending time with my family.
Almost equal in importance was my marriage to Jennifer 28 years before my diagnosis. Her patience and care giving was and is a safe harbor from the storm of cancer. Having a partner that is willing to stand by me and walk beside me throughout this journey has been so important. I don't say "thank you" to her frequently enough, but each day I am filled with gratitude.
I am comfortable with all of my major treatment decisions, even though some did not work and others had undesirable complications and side effects. All of those decisions were made after careful consideration with multiple doctors, my own research, discussions with Jennifer, and study and prayer. The neoadjuvant chemo did not work. My radical cystectomy and neobladder had several complications and permanent effects on my physiology. The confirmation of metastatic disease and the 15 months of watchful waiting gave me time to reorient myself to my likely demise, as more than 90% of people with that diagnosis died within 5 years. The second round of chemo -- ddMVAC -- may had slowed my disease for a few months, but also gave me peripheral neuropathy which continues today. Most importantly, my entry into this clinical trial in February 2015 that has succeeded in eradicating all visible evidence of my cancer was facilitated by Dr. Andrea Apolo at NIH. This immunotherapy treatment for metastatic bladder cancer did not exist when I was first diagnosed. I am so grateful for the efforts of all of the medical professionals that have led to the availability of my immunotherapy treatment.
As I recently noted, Hopkins recently had a radiologist who was not previously involved in my case do a review of all of my CT scans since I started the trial. She measured all of my tumors over the course of 7 scans over the past 20 months. She concluded that my most recent scan showed no visible tumors -- not even enlarged lymph nodes. It's not a cure, everyone is quick to point out. It's just that there is no evidence of disease.
In light of that finding, today I asked Dr. Hahn whether there was any scientific reason to continue getting nivolumab. He shook his head and said "not really." Without anything detectable to target, and no evidence that continuing with the immunotherapy will have any beneficial effect, he said that the decision of whether to continue was more psychological than medical. I asked whether the trial sponsor (Bristol Myers Squibb) needed me and others to continue getting the drug and accumulate more data. Dr. Hahn said he didn't think so -- BMS has submitted its application to FDA to have Opdivo approved for use on metastatic bladder cancer, so it has already collected the data it thought it needed. Of course, BMS wants to continue to follow me and other participants in the trial to see how durable the results are, but there would be nothing gained scientifically by my continuing until February 2017.
Dr. Hahn noted that he could see a more visible rash on my face, and said that I should let him know if it got worse. He added that my increasing dermal toxicity might be a reason to suspend treatment. He added that under the trial terms, I would have the right to resume treatment if there was a recurrence of metastatic activity. He stressed that it was solely my decision, and did not pressure me one way or the other.
There also is no evidence that continuing immunotherapy acts as a prophylaxis against the recurrence of disease. It might be logical to believe that continuing to take a drug that teaches the immune system to kill cancer cells might be a good idea even if someone has no detectable cancer, but that's not how doctors usually like to think. More importantly, there is simply no data that doing that helps guard against recurrence.
I went forward with my scheduled infusion -- #44 -- and am going to think hard about whether to continue getting infusions. Right now, I'm leaning towards not going for the full two years. Whether that means getting one or two more, or what, I have not yet decided. I think I'll get at least one more on Dec. 6, but I might make that my last one. But that decision is not final. I'm going to search, ponder, and pray. And give thanks.
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