Larry Koonce, brave Texan, friend, thymic carcinoma patient, passed away Monday, June 7, 2004, from complications due to his treatment. Larry had a strength and spirit that comforted us all. See you in heaven, cowpoke.
I will try and answer all questions. First, I need to say that I have pretty much just given myself to the medical profession and done exactly what I was told. I have been blessed to have a long list of doctors who are very good at what they do, who know the things they can’t do and know other doctors who specialize in those “other” things.
Losing my voice was my only symptom. No pain, I just woke up the morning of June 19, 2002 and talked in a whisper. Unknown to me at the time, the thymic tumor had spread in my chest and eaten through a nerve that operates the vocal chord on my left side. I just thought I had some form of laryngitis. In a matter of a very few days, I had seen several specialists and had a CAT Scan. What was happening was each doctor was looking for the most obvious cause to the laryngitis that he could treat, not finding it and referring me to a specialist for the next most obvious cause.
It didn’t take very long for each doctor to give me a cancer diagnosis. What kind? They didn’t know. Lymphoma, lung cancer, thyroid cancer and even testicular cancer were all possibilities. I continued being pushed up the line to someone more specialized until a lung specialist put me in front of a chest surgeon. All this was a blur to me. These doctors were calling and making the appointments for me, either later the same day or the next day. They had guys seeing me on their day off or coming back early from vacation to see me. There was a lot of grumbling about how they were only doing this as a favor to the doctor who had just referred me to them, but each one then got just as serious as the prior guy.
In less than a week I had a biopsy and chest surgery. A couple of weeks after the surgery, the surgeon told me I was at a critical point in the treatment because up to then, everything had been very easy for the doctors. Now, I was about to see an oncologist and the treatment was not going to be as “by the book” as all the previous diagnosis or surgery had been. At that time, the pathologists were still struggling with diagnosing the tumor that had been removed from my chest. Yes, that’s right, a couple of weeks after the surgery, they could not confidently diagnose the tumor.
When I first met with the oncologist, the thinking was that the tumor was a Malignant Thymoma, a type of thymus cancer but one not as rare or as aggressive as Thymic Carcinoma. He was pretty reassuring and shared that he had one patient who had first been diagnosed with Malignant Thymoma in 1966 and he was still treating him.
My oncologist started me on a regimen of radiation treatments. Almost immediately, the diagnosis was revised as the slides from the tumor had been forwarded to the pathology department at the MD Anderson Cancer Institute in the Texas Medical Center. (The Texas Medical Center is the largest in the world. There are many, many huge medical institutions there and they all have giant egos. Thankfully, that all evaporates when they ask each other for help in treating a patient.) What stage was my cancer? Stage IVB. It had spread to my lungs, my chest wall, my kidneys and my liver.
I was put in the Methodist Hospital the next week for in-patient chemotherapy. On the first day, my doctor told me that he had conferred with other cancer doctors with experience treating Thymic Carcinoma in Paris, London, New York, Tokyo, Singapore and across the street at MD Anderson. They all concurred with his treatment plan. I then told him even though I was doing all the things all the doctors told me to do, I really didn’t know where I stood. He told me “Yes, I know you don’t. Now I have to go see some other patients.” I suppose that you can imagine the coldness I felt at that moment. I now believe that he didn’t expect me to be around for chemo week number two.
It is about this time I became aware of how rare this cancer is and how little experience cancer doctors have treating it. I was initially told that there were only about 125 cases in medical history. As he continued to research the disease, the number grew to 170 and is now something under 400 since it was first identified back in 1930 something. That averages out to be 5 or 6 cases worldwide each year. So, we aren’t going to be the beneficiaries of any studies done on a large number of patients. Our doctors are winging it.
This was all very surreal for me. I had not had any pain or discomfort from the cancer, just lost my voice. I played 18 holes of golf in the Houston heat and humidity a couple of days before the surgery and continued my regular workout routine until the day before the surgery. I honestly expected that I would be through with what ever they had planned in a few short weeks. It was during the initial phases of the radiation therapy that one of the radiation oncologists said my attitude was very encouraging and it was the most important thing in my overall success as a cancer patient. I could not understand how my attitude could be more important than the army of doctors and the radiation and all the chemo drugs. He said he couldn’t explain it. He said cancer doctors all over the world had noticed for 2 or 3 decades that patients with positive attitudes responded much better to treatment and had much better outcomes in surviving cancer. He said there have been several studies trying to understand why that is, but none have come up with any medical reason. But, he said they are still observing that it is true. So, KEEP YOUR SPIRITS UP.
I get hospitalized, one week at a time, for the chemo treatments because I get a cocktail of chemo drugs, which can have some pretty adverse side effects. One is Bleomycin, one is Etoposide (VP-16) and one is Cisplatin. The Bleomycin can cause scaring of lung tissues and the Cisplatin can cause kidney failure. They all cause nausea, fatigue, decreased blood counts and hair loss. Before the chemo is started, I am hooked up to a saline solution for a few hours to “hydrate” my system and immediately before I am given a cocktail of anti-nausea drugs to ward off that side effect. While hospitalized, my blood count and vital signs are monitored constantly to make sure the chemo isn’t doing more harm than good. A couple of weeks after being discharged, I get a blood sample done to see how I am recovering and a couple of weeks after that another blood sample. If everything is OK, I’m back in the hospital again the next week to start the process over again.
Usually one month after the second trip to the hospital, I get a CAT Scan or MRI to see if the tumors are being affected by the chemo. I had a CAT Scan just before the radiation started to go with the one that found the original tumor. The doctors have used those two as a baseline. About 4 months ago, the tumors were too small for the radiologists to use CAT Scans to identify the cancer. So, they switched to using MRI’s.
My lowest point was the week before Thanksgiving. I had finished the radiation a few weeks before, but the cumulative effect was an esophagus that had been fried. Eating, even with all the prescribed pain medication, had been an effort for weeks. (Tortuously, I still got hungry, could taste, chew and swallow without problems. Getting food between my throat and stomach was an adventure.) I had just finished my third week of chemo. The effect of taking radiation and chemo simultaneously had made me very weak. Ironically, immediately prior to this, I had gotten the news that all the treatments were actually shrinking the tumors.
My last MRI was in May of 2003. I had my last chemo trip last week. If everything goes according to schedule, I will get the results of the next MRI on July 17th. The last MRI was “almost perfect.” So, it is with a lot of high anxiety that I am anticipating the next one. But, I have also learned not to get too excited too soon. Each CAT Scan or MRI has shown the tumors to be shrinking. The only ones left last time were “pin-head” sized and only in my liver. I will wait and see. Not enough is known about this cancer to stop the treatments until there is literally not a trace of it remaining.
As I said, this has been surreal. I am 54 and prior to all this, I had never been a patient in a hospital, (I don’t count being born), or had any type of surgery. I have never even had a cavity. I was the poster boy of physical fitness and lead a very rigorous, outdoorsy lifestyle. I had never smoked or done any type of drugs.
When I lost my voice, I weighed just under 195 pounds. I have had a 3x a week workout routine for over 25 years and my body fat was a consistent, measured 11-12%. After the surgery, radiation and chemo, I am now up to 160 pounds. No workouts, hunting or fishing trips, golf, baseball or football games or much else in the past year. When I get the “all-clear” from my doctor, I expect it will be at least another year before I am even close to where I was. I have been unable to do much professionally. I work in mergers & acquisitions and that business has been slow anyway.
I am told that I am setting a new world’s record in regards to this disease every day. In the past year I have seen many people with cancer who are in much worse shape than I. Through all this, I have not needed any blood transfusions or required any treatment for any side effects.
My doctor’s name and number (sorry, I don’t have an email address).
Frank E. Smith, MD.
Professor of Medicine
Baylor College of Medicine
6550 Fannin Street, Smith Tower #1051
Texas Medical Center
Houston, Texas 77030
Glenda Williams is his Assistant
I must tell you in advance that in the almost one year since Dr. Smith started treating me, I have never called his office and had the phone answered by a person. I always get the answering machine, but either he or Glenda have always called me back.
As rare as this is, I don’t think any of us can feel that our situation is “typical.” In my own case, I feel that losing my voice got me in front of the doctors just ahead of the tumors doing some serious damage to the vital organs to where they had spread. I had an operation on the voice and now I speak with a bit of raspy-ness, but it’s a small price.
Dr. Smith told me early on, that the Stage of the cancer refers to how much it had spread, not it’s treat-ability. So, don’t be discouraged. In fact, if you were diagnosed in 2002 and you are still here, you are on the good side of the curve. Do not even look at the stats. This army of doctors told me over and over again, that my odds were going to be either 0 or 100%. And they were right. It doesn’t matter if the stats say 99% of the patients will survive or 99% will not survive. Somebody is going to wind up on the 1% side in either case. Nobody knows who. And all that matters is where YOU wind up. So, you have those same odds that I had, either 0 or 100%. The message is ……..DO NOT GIVE UP.
Larry and Barbara have become email pen pals, and he has been a real inspiration. Recent scans show that his tumors are getting smaller, but Larry won’t be satisfied with anything except “cancer free.” One tough Texan!
Larry’s tumors were getting smaller and his doctors continued chemotherapy. His recent treatments made Larry weaker and weaker, he developed fluid in the lungs and an infection. He passed away Monday.