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.
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.
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.
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.
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.
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.
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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ReplyDeleteKen, when I count my blessings this Thanksgiving season, I count you, someone I've never met. I stumbled onto your blog in April 2015 right after I received the news of my bladder cancer diagnosis. My diagnosis was almost spot on the same as yours and finding your blog gave me hope when I thought all hope was lost. Your words were truly a lighthouse on the treacherous journey. I read every one of your updates. I keep you in my heart and in m prayers. Thank you and Happy Thanksgiving.
ReplyDeleteAs always, a fine post. I too am grateful that you have survived this long. The prospect of having you around quite a bit longer is also something for which I find myself grateful in this Thanksgiving season. Thanks for coming in for Josh's wedding. We look forward to your next visit. Start exercising and when you come out, let's go skiing (like we did when we were much younger). Love ya, brother.
ReplyDeleteHi Ken! I've been following your blog for over a year. I'm 53 (male) and have a different cancer than you (metastatic renal cell carcinoma) for which I was diagnosed back in June 2015. However, I was in a clinical trial using the same immunotherapy treatment that you received (i.e., Nivolumab + Ipilimumab for four treatments and then just Nivolumab). My clinical trial was at Memorial Sloan Kettering in NYC.
ReplyDeleteAnyway, cutting to the chase: I began the immunotherapy treatments in late August 2015 and, like you, I was very fortunate that the tumors have since disappeared. However, I did incur some side effects, initially just joint pain and fatigue. However, in early July 2016, I had a bad episode where I almost collapsed and had to go to the ER at MSK. As it turned out, the treatment had damaged my pancreas, which was no longer producing insulin. Bottomline: I'm now a diabetic (technically "medically induced", but essentially a Type 1 diabetic) and have to take insulin before each meal and before bed. As such, I have not received the immunotherapy treatments since June and am presently being monitored with CT scans every 12 weeks. My latest scan was last week and still no sign of any tumors.
I offer this simply as someone who was on the treatment and ended it early. I feel physically better since I stopped getting the treatment, as my energy level has come back and the joint pain has decreased. And, as time has passed, the initial anxiety of the cancer possibly coming back has subsided.
I wish you continued good health and the best of luck to you with your decision.
Ken, As the long time girlfriend of J Robert Klinck who previously posted comments on your blog, I wanted to tell you that Bob, who had Stage IV squamous NSCLC, passed away after a 2.5 year battle with lung cancer. He initially had 3 different chemo trtmts along with radiation that did nothing. We then convinced the dr to give him Opdivo which had just hit the market the same month (March 15)and his tumor did not change at all(meaning most importantly it did not grow in the year he had Opdivo, when he had been told he had only 6 months to live). Unfortunately because of the expense of the drug and because the dr could not show cause to continue (i.e. there was no reduction in the tumor), he was taken off Opdivo. The cancer immediately spread everywhere and he was then put in another trial of what was supposed to be another immunotherapy drug but which ravaged his body just like chemo did. He passed away just a few months after stopping the Opdivo. After reading your post something nagged at me to write to you. If Bob had had the chance to continue Opdivo I am confident he would be alive today and living with and managing his cancer. He had a full life on Opdivo even with Stage IV cancer, energy, no sickness, etc......but as soon as it was taken away the cancer consumed him. I'm not sure what the answer is, I only know access to Opdivo would have allowed my partner of 12 years to be here with me this Christmas, of that I am sure. Wishing you much success and continued health on your journey. Please do keep us posted.
ReplyDeleteWith kind regards,
Jen Swisher