Here is a member story about Bernie Kaplan. For three and a half years I have been on a cancer roller coaster. For three years Gleevec managed to halt tumor growth. Periodically, though, elevated liver enzymes caused me to be taken off the medicine. I was the “On-Again Off-Again Man” of the Life Raft Group.
When some of the tumors began to grow, I had to undergo massive surgery, for the second time. Finally, I was told that I had become resistant to Gleevec and my only hope was Sugen (SU11248), a trial drug from Pfizer. I was sustained by a vision of my parents that occurred three months to the day before my initial diagnosis.
We were on vacation, and as our plane was about to land in Israel, the stewardess asked us to sit back and relax. As I closed my eyes for a moment, I suddenly heard the voices of my parents speaking to me. Both had passed away more than 10 years earlier. I did not see them but I heard them clearly. They said one sentence to me which I can never forget — “Bernie, you will live a long life and everything will turn out fine.”
One Sunday after I was taken off Gleevec, my brother came to visit me. He is a psychiatrist and quickly diagnosed me as suffering from serious depression. I couldn’t lie to myself anymore and had to face that issue as well. He told me it was quite normal considering everything I was undergoing. He recommended me to a colleague who promptly prescribed anti-depressant medicine. After two weeks off all cancer medicine, I went back up to Boston and took the tests to see if I was acceptable for the new Sugen drug. I passed the exams and was supplied with the medicine. I was told, however, as we all know, that one of every three patients in this trial receives a placebo to test the effectiveness of the drug. This meant that the tumors in my abdomen would continue to grow if I had been given the placebo. I was in total despair.
I believed my end was near. I could barely walk and couldn’t get out of a chair without the help of my wife. I had no appetite and lost more than 30 pounds in a few weeks. I was having pains from the rock-hard tumors as they grew, pressing on my kidneys. One tumor was sticking out from my stomach like the end of a pencil. A few weeks later the doctors in Boston again examined me. When they were done, my son and I walked to the parking lot to return to New York. As we got into the car, my cell phone rang. It was the nurse. She asked me if I was still in Boston because the doctors had decided they wanted me to have a CT scan immediately to determine the exact tumor growth.
We ran downstairs, met the doctor in the lobby, and went in for the CT scan. We returned to New York late that night. The next morning we received a phone call from Dr. George Demetri. He told us that he had decided to ask the drug company to break the code because of the growth and let him know if I was on the placebo or the real drug. The next evening at 6 we received another phone call from Dr. Demetri. He said he would know by 10 p.m. if I was on the placebo. If I was taking the placebo, he said, then we should immediately travel to Boston to meet him in the early morning. Can you imagine the situation?
My wife and I were praying to God that I was on the placebo, not the real drug! An hour later the phone rang again. My wife answered the phone and shouted to me to pick up the extension. My life was literally on the line. Dr. Demetri said, “Bernie, thank God, you’re on the placebo, get up here as soon as possible!”
I think my wife’s responding shout could have been heard across the world. Within 20 minutes we were in the car and on our way. We stopped at my sister-in-law’s a few blocks away and picked up some supper for the ride to Boston. For the first time in four weeks I had some appetite and was able to eat a little. We saw the doctor the next morning at 8 and he gave me the real drug.
I was so dehydrated that he also put me on an IV. I am happy to report that now, 12 weeks later, the real drug is doing its job. My stomach is much softer, the pencil-like tumor has receded and the pains near the kidney have significantly diminished. In addition, the small tumors are hardly visible and many of the larger tumors have shrunk 40 percent! What the future will bring, only God knows.
The good doctors in Boston helped save my life. I had faced death and collapsed. For three years I had been strong but I had reached my limit, notwithstanding the vision. I am slowly regaining my strength and have even gained some weight, but I will never be the same. One of my sons said to me that when one rebuilds, you sometimes turn out stronger. I hope he is right.
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