So here we were. After ten years of daily dosing on 400 mg of Gleevec, I would be walking away on a wing and a prayer. I was not the first. Of that, I made sure. I may have been a Guinea Pig when my life was on the line back in 2000 but not now, no way. The first patients that had enrolled in Dr. Drukers experiment to forego Gleevec after at least five years in molecular remission, had started about a year ago. The results were varied. Many patients remained in full remission for a sustained period of six months plus. Others had lost their remission in as little as two months, the average loss being five. Now it was my turn. Bye,bye brown pill. I won’t miss your side effects. Not one bit. But, I thank you for your remarkable service.
It was March of 2010. I went downtown to see Dr. Dave and do the bloodwork necessary to begin the study. I got great news when he told me that monthly Bone Marrow Aspirations would not be necessary like we thought that they would be. Hallelujah! The test of time every month though would be a negative PCR test. Since my current bloodwork was 100 percent negative, we assumed that today’s would remain so. In one week, after the results come back, I will begin the process and stop the drug. Anxious? You bet!
I got the call from Dr. Dave and it was all systems go! All Stop! “Put the Chemo pills away and live your best life bud”. Here we go. It was weird. I was on such a schedule for ten years. Every night, without fail, well mostly every night, I made sure I took my meds. In the frig, chilling, waiting for me to grab the bottle and dispense the life saving formula. As time moved on, I would get used to not reaching for that bottle. You know what else I got used to? No side effects. No more swelling of my eyelids or water retention. No more bowel discomfort issues. No more dragging fatigue and tough mornings. Life was really getting better. Ten years of daily Chemotherapy meds can be a real drag. The cost of staying alive. I didnt mind. Take the pills, live another day. Done deal for me. But this was freedom. Could I actually go on like this forever? Cured of CML by virtue of such a long remission on Gleevec? We shall see.
End of month one. Blood results…negative. Sweet! Let’s keep it up! End of month two. Blood results…negative. Sweet! C’mon Blood! End of month three. Blood results…negative. Sweet! Feeling Great! End of month four. Blood results…negative. Sweet! Cruising Now! End of month five. Blood results…positive. Boom!!
“I’m so sorry to tell you this Jeff”, said Dr. Dave. ” Your PCR results came back and the results were positive and trending up quickly”. This was bad news. Like a relapse all over again. So, Bone Marrow Transplant, didn’t work. DLI infusions, didn’t work. Interferon treatment, didn’t work. Gleevec worked, but a lot of CML patients removed from Gleevec therapy were experiencing a Leukemia free life. Not me. The relapse would entail a quick Bone Marrow Aspiration to rule out any sign of accelerated disease or Blast Crisis and the immediate return to my 400 mg daily Gleevec routine. Immediate return. I will see you tonight my little friend. 10 pm. Back to the grind. Back to the fatigue and baggy eyes. I got a call from Dr. Druker too that week. He appreciated my participation in his trial and felt badly that it didn’t work out. The good news was that most trial participants that relapsed became PCR negative again within a few months after resuming their therapy. So did I. After three months of blood testing, my PCR negativity resumed and luckily there was no issue of advanced disease. Back to zero. Back to normal. Well…as normal as you can be after fourteen years of this shit. C’est La Vie.
Next up: The Next Generation