Mar 08, 2017
~~A few days before Thanksgiving in 2005 I was diagnosed with leukemia, discovered by accident during my annual physical—I had no symptoms. In addition to having one of the more common forms of this blood cancer, the extensive blood work found a broken chromosome complication. At that time the epidemiological research found that the median life expectancy after diagnosis of my type of blood cancer was five to six years, with the outliers getting no more than 10 years.
Serious physical problems due to the leukemia began to appear in late 2009. Thanks to the extraordinary efforts of my wife, who had assembled a team of world class oncologists, it was agreed that I should start chemotherapy in early 2010. I had seven cycles of a nasty chemo cocktail over the next six months, followed by six months of orally taking a powerful anti-blood cancer agent called Revlimid. Revlimid is a derivative of thalidomide and therefore I had to certify each month I was not having unprotected sex with a fertile woman.
By 2011 I was in remission and had pretty much survived the side effects of the chemo. I was relatively lucky that my body tolerated the side effects for the most part. I have lasting damage to my immune system as well as a variety of other mostly minor issues. But I was alive and well, living a completely normal life.
Normal until late 2013. The chemo cocktail should have lasted five or six years. However, due to the broken chromosome, the leukemia came back in less than three years. By that time a new anti-leukemia chemo cocktail had been approved by the FDA with fewer side effects, so I had four more chemo cycles. However, the broken chromosome again interfered –while the new rounds of chemo in November knocked down the negative blood factors that represent leukemia, I still had some physical issues.
Taking A Gamble
My doctors wanted me to continue with the traditional chemo, but my wife discovered another approach. The FDA was a few months away from approving an LLS-funded drug that appeared to be extremely effective against my leukemia, including the broken chromosome. The new oral drug—just take three capsules a day—was described as having relatively minor side effects. So, I gambled. I decided to wait for the new drug rather than subjecting myself to more chemo that may not be effective.
In late January, my oncologist was allowed to write the Rx for the new drug, which was finally approved by the FDA on Valentine’s day of 2014. Within a month, the physical symptoms were gone and my blood levels were looking really good. The side effects appeared to be innocuous.
Then some bad stuff happened. One of the unusual side effects of the miracle drug is virus activation. I was attacked by a bunch of viruses beginning in mid-June of 2014. I wasn’t able to eat or talk and lost 20 pounds in a matter of weeks. I was being driven to the hospital twice a week for tests so that my doc could determine which virus was the problem and prescribe a treatment.
It took several weeks to find the culprit. The treatment was a series of infusions of gamma globulin to help my immune system recover. By the end of July, the virus was on the run, thanks to the eight infusions of GG. I was able to talk, eat, drive and otherwise function. And consuming inordinate amounts of chocolate ice cream!
Unfortunately, the ninth infusion triggered an adverse reaction. Within a half hour of the infusion my body began vibrating while I was still in the hospital, I was in intense pain and my heart was racing. Remember those dramatic scenes in hospital TV shows when they call for the crash cart or a Code Blue? Well, I had something not quite as dramatic, but close. The crowd of docs and nurses decided that the best way to stabilize my body was to knock me out. Again, not as dramatic as one of those medically induced comas you’ve read about or seen, but close.
Four hours later I woke up very sore and very groggy, but fine.
The Current Scene
I’ve been in remission for more than three years, thanks to drug research funded by LLS. And the future is even brighter. As you read this one of my doctors is conducted a clinical trial combining the drug I take with an even newer anti-leukemia drug, also initially funded by LLS. The goal of the clinical trial is breathtaking—the theory is that the two drugs combined may cure my leukemia, with minimal side effects for most people.
You read that correctly. The clinical trial is designed to determine if certain blood cancer survivors can take the pills for X years and then be done with blood cancer. Forever.
And that’s why I’m working to raise funds for LLS. Over the past 60 years the organization has funded more than $1 billion in anti-blood cancer research, some of which saved my life. So please join me and the other nine “Champions of Hope” who have been nominated to lead the charge to raise $600,000 by May 18 to fund more research. I’ve met with one of the doctors on the project review committee who told me that they have to reject many worthy research proposals because there aren’t enough funds.
I was lucky—the review committee many years ago green lighted the compound that enables me to live a full life. We need your help to make sure other worthy research isn’t denied funding.
Thank you for taking the time to read my story. Will you please help us help others?