Month: September 2022

My somewhat urgent email to Dr. Druker was inevitably intercepted by a member of his staff when it arrived at the Portland University Health and Sciences Center. Their response was cordial, to the point and somewhat ambiguous. If and when Dr.Druker was available to review my case, I would be alerted to be ready for a call. That call was key to understanding the intricacies of why and how, my Gleevec stopped working on me after so long. Things were good. Business was good. Nick was flourishing in Cali, and Joe up in Canada again. Lori was teaching away in the North Penn School Library system and continuing her reign as the District Library Chair.

About a week after I had submitted my Hail Mary letter to Dr. Druker, the phone rang with the glorious sound of “Mr. Keenan, are you available to speak to the doctor?” He’ll yes!! …”Please hold”. As I composed myself, readying every question, comment or analysis that I would confront him with, I felt my life slipping into that void of despair. Please have an answer for me Doc and make it good. “Hi Jeff, how the hell are you?” “Well Dr. Druker, here is my situation.” Hopefully he had received and reviewed my email and would deliver an easy logical answer to my problem. His analysis and take of my issue was that invariably, Gleevec had found a way to circumvent the path to Cml remission and basically become useless in the fight against my Leukemia. The question was why? Our next move was for Dr. Druker to send a special blood harvesting kit that would allow a tremendous amount of blood to be drawn and sent priority status from Philly to Portland to analyze the CBC and PCR parameters in the PHSCenter. The labs there were the tops in the country. He would figure it out.

As the specimens were drawn and packed for their cross country FedEx jaunt to the West Coast, I signed my boys initials on the box for luck… Couldn’t hurt. Now we wait again. About two weeks according to the Hanahmen staff. No big deal. “Yeah right”. Words of encouragement from Lor softened the blow and keeping busy at the store kept my spirits up. Still, no one knew of the predicament. It was still too early to scare the family. Things were finally looking up for everyone. About two weeks in, I got an email from the Druker asking if I would be available to talk the next day. It was Saturday. I said “Sure…what time”. He said that he would call around 3pm, 12 pm his time. I will await your call sir. Thank you. So that email was basically an offer to stay up all night to think about your life, your family, mortality and life beyond the unknown if that exists. Without hard proof, the scientist in me remained skeptical yet full of unbridled hope and passion for my truths to be dashed by that well known or vaulted version of bliss on the other side….Heaven.

So, I was watching the Philadelphia Eagles play the New York Giants in a usual tit for tat battle of the pigskin on an uneventful Sunday afternoon. It was a nice day and the Eagles were actually winning when the phone rang. Right on the money. 3 pm.Here we go. Was I nervous? Are you right now? The question all Oncologists ask when they are about to crush your world is always the same. It doesn’t matter who the doctor is. “Hi Jeff, what are you doing?”. What am I doing? I’m waiting to get my heart ripped out! Or, as I actually answered, “I’m watching football”.”Thanks for the call Doc”. Let’s get down to our Sunday call. Usually not too promising since the call can’t wait until Monday. Spit it out. “Ok, you are a bit of a conundrum. An anomaly of sorts. Our lab was able to read and detect a rogue chromosome. A chromosome only seen or discoved once before in the history of the Cosmic Cancer Database. In fact, you are the only one in the world who carries this mutation.” “And the other patient?”, I asked. “He passed away in 2010 a few months after the mutation was detected in his DNA.” Less treatment available eight years earlier. I would now revert to test dummy status again. I asked Dr Druker if I had a chance for living and how much longer I might have. ” He said…how many years since your FDA trial started have you stayed alive?” “18 sir”. ” Let’s shoot for 18 more” he said.

Dr.Druker would now have me transferred from the I. Brodsky and Associates group at Hahnemann University Hospital to the Abramson Cancer Center of the Hospital of the University of Pennsylvania. Dr. Selina Luger would be taking over my new protocol along with Dr. Druker. Dr. Luger was a renowned expert on Blood Cancer and quite the looker.. Canadien too. They made a fabulous experienced team of seasoned Hemotologist/Oncologists. It was now October and my first foray into the big city would be the first week of January. I would continue to take the heavy dose of Gleevec through the end of the year and contact any of them if things got any worse. I would become the number one and only in the study of J Keenan vs the BCR-ABL(p210) mutation. This was war. Screw you 210!

Next Up: A Pro, A Backpack and A Blond

So many thoughts overwhelmed me at this time. My mind was running rampant with thoughts of what if and where do I go now? What could possibly be going on with my cancer. Why after 18 years would my drug stop working and my Leukemia return? I was keeping this between Lori and I. Figure out the story here and handle it.

My next appointment with Dr. Mike was this week and just about every free minute I had was spent emotionally and mentally preparing for the next move. I’m sure Dr. Mike had done his due diligence and he would be prepared to deliver the goods. But first, to the Phlebotomist to draw another gallon of blood to redo the CBC and PCR test, hoping for a miracle. Would the extra daily dose of gleevec do the job? We shall see. Waiting in an exam room was usually a relaxing respite for me. Lay back on the exam table, usually get in a twenty minute snooze before somebody showed up. Could be a nurse checking in, a Doc saying Hi, an army of Oncology Residents doing rounds and asking a million questions. This time wasn’t as routine when in the next minute you could be hit in the face with a baseball bat. Rhetorically. Figuratively. The reality of a cancer diagnosis pales to the introduction of relapse number one, then two, then three. The mental toll is exacerbated exponentially as each return of your cancer just hammers you.

Dr. Mike entered the room after about 30 minutes with his usual stoic demeanor. So soft-spoken, he was not very excitable. His delivery was a basically monotone word salad of technical, medically charged explanation of your circumstance and diagnoses. In layman’s terms….you’re screwed. Yes, I was. The increase in my medication from 400 to 600 mg a day had done little to stop the increase in my blood counts. They were still trending higher, but not as quickly as before. Dr. Mike said that we would now go even higher in my daily dosage to 800 mg. At that point life becomes more uncomfortable. From 400 mg to 600 mg, not too bad. From 600 to 800 mg., enter the nasty side effects. Our meeting, adjourned for two weeks, I left the hospital and thought to myself…” I’m going rogue” ! Not one to sit back and wait, I knew that I needed to act. Quickly!

When I arrived home, I immediatly went to my computer and found the email contact for Dr. Brian Druker. Dr. Druker was the main creator of Gleevec and probably the world’s most informative expert on the drug. He would know what to do with my situation and take point on the case. I just needed to email him and await a response. His main practice and research facility was located in Portland, Oregon. Dr. Druker informed me many years prior, that since I had participated in the FDA Gleevec trial in 2000, if at any time I would need consultation or help with my condition that he would just be an email away. This was that time. Email written, conundrum explained, lack of direction and answer reiterated, I would await his response. I was going rogue. Taking the fight to my CML. I couldn’t wait for Dr. Mike to figure it out anymore. Let’s Gooo!

Next Up: Keeping His Promise

So I waited. The average length of time before the results of my PCR blood test were received was about ten days. Always an eternity and a lifetime of contemplation within such a miniscule amount of time when you think about it. Every cancer patient will tell you that waiting on test results, whatever they may be, is agony. I already knew that my white blood cell count was highly elevated. An ominous precursor to a positive outcome to my DNA testing. When my phone rang and I saw that it was Dr Mike’s office, the lump in my throat began to explode. Here we go. As expected, the test was positive. For reasons unknown to my current medical team, my CML had returned. It had been eighteen years since I began taking Gleevec. At approximately nine to ten thousand dollars per month for the prescription, the cost to keep me going and living cancer free so far was around $2,160,000. Imagine that! One drug. Thank goodness for health insurance! Now what? Why the sudden change to my condition? I felt fine. I looked fine. I wasn’t fine. The cancer can escalate very quickly, moving into a phase called a Blast Crisis. A situation that has no return. Dr. Dave had told me nineteen years before that he wasn’t going to let me die. Now he was gone and Dr. Mike had zero answers.

The first course of action was to increase the dosage of Gleevec. Hopefully, that would create a situation where the Leukemia would slow down and perhaps stagnate or actually decrease the white cell count. It would also give Dr. Mike more time to consult with other Oncologists who may have some answers as to why my body would reject the current course of treatment. Most CML patients that rejected or had a poor response to Gleevec usually had that happen within a few months of starting the drug. Not eighteen years later. A conundrum indeed. I would return to his office in three weeks. More bloodwork after increasing my dosage from 400 mg to 600 mg per day, starting immediately.

It was May of 2018. Joe was returning from Canada in a week and Nick working hard in sunny California. My parents were getting ready for another summer with everyone at Long Beach Island. This news would not be welcome by anyone. Too many times, our lives have been turned upside down by the terrible return, again and again, of this crap. It would be our secret. Lori and I would wait until we knew more about the situation before unleashing this beast. For now, I hope that increasing my dosage puts a pause on the white cell count. Fingers crossed!

Next Up: Going Rogue