International MPN News, Science & Opinion

The Long and Winding Road/ Cliff

From Crashing Through a Barrier to Edging Toward A Cliff

by Harvey Gould

In early November, 2013 I crashed through a barrier on my MF long and winding road journey, and swerved into the dark and foreboding forest of AML.

After recovering from the initial shock of this new diagnosis my treating hem/onc at UCSF, Dr. Damon (in our family, affectionately known as Dr. Demon), tried to eliminate some of the fog of the new diagnosis by laying out the upcoming sequence of events.

A search was being initiated for a stem cell donor. HG maypoleWhile that search was ongoing, on an outpatient basis, I’d start a chemo agent called 5-azacytidine for five consecutive days, then go “off” for three weeks, then start again—for as long, if at all, that it appeared to be beneficial not only to retard proliferation of the disease, but also to push my disease back to the chronic phase—all in an effort to get my body prepared for the SCT. If the 5-aza worked as hoped for, I might then need in-hospital chemo for “consolidation” of the gains made on the 5-aza to keep me in shape for the transplant. It was premature to make that determination at the outset. Once my body was “prepared,” and a donor found, I’d be hospitalized for the transplant.

Based on my numbers and the rate at which the disease was proliferating, Dr. Demon agreed that I could withhold starting the 5-aza until past Thanksgiving, but he was clear that I should start before Christmas.

Shortly after my MF diagnosis in 2000, he’d said that one of many critical issues in working with MPN patients was to catch them before they fell over the cliff because then it was too late to help. Now, many years later, obviously he saw me edging toward the edge of that cliff and he was advising me to act swiftly rather than to dance closer to the edge.

We agreed on a December 9, 2013 “start” date for the 5-aza.

For more than two years, I’d been in a clinical trial at Stanford for a JAK2 inhibitor, Cytopia, also known by its sexier name, CYT387.  I needed to come off Cytopia since my disease had proliferated beyond its help. I had an end-of-study visit scheduled for Tuesday, December 3.  At that appointment, among other things, Stanford’s lead doctor for the Cytopia clinical trial mentioned that one of his colleagues at Stanford (Bruno Medeiros,) was conducting a trial for AML patients, combining 5-aza with an experimental drug, MLN4924. (Another sexy name.) Was I interested in getting more information, the doctor wanted to know?

“Sure”, I said.

“Unfortunately, my colleague is presently out of the country, but I’ll try to get in touch with him to schedule an appointment, but I doubt it will be prior to December 9.”

Before I finished asking the question, the doctor answered that if I started on 5-aza, or any other protocol, automatically I would be excluded from the experimental program.

He agreed to try to get as early an appointment as possible for me.

The next morning my wife and I flew to The Big Easy to attend a dinner honoring seven MPN Heroes, including our daughter. There was no chance before departing to learn if Dr. Demon agreed that I could afford to delay the start of my 5-aza treatment by a week or so to meet with the Stanford doctor heading up the experimental program and determine whether it might be suitable for me.

Even though the honorary dinner for the MPN Heroes was during the ASH Conference and my hem/onc, along with 22,000 others poured into New Orleans and all was hectic, my doctor and I managed to be in touch with one another. He agreed that I could wait one week to start the 5-aza in an effort to learn more about the Stanford program. He rescheduled my new “start date” for 5-aza for Monday, December 16, both of us knowing that I was edging a little bit closer to the edge.

The earliest available appointment for meeting Dr. Medeiros was Friday the 13th (Oh, that’s not an auspicious date, I thought. Was I being tricked into a meeting with Freddy Krueger?)—just three days before the rescheduled 5-aza regimen was to begin.

The upshot of the meeting with Dr. Medeiros was that I probably qualified for the program, but a final determination could not be made until he had the results of a battery of tests I’d undergo. AND because of the upcoming holidays, the tests could not be completed until January 6, 2014, so, if admitted, the likely earliest start date would be January 9. He explained that MLN3294 had been used in some other trials; it appeared to combine well with 5-aza; however, there were only a small number of AML patients on this experiment so statistics weren’t terribly meaningful. Still,  the results appeared promising—better than those only on 5-aza alone.

Back home late that same evening, armed with the doctor’s 24 page abstract about the program—of course, containing literalistic eloquence that would have made Charles Dickens proud—I was back to the future. Can I afford to delay starting 5-aza, this time by almost another four weeks? How close am I to the edge of that damn cliff? Don’t you just love it when what starts as a relatively straightforward path suddenly becomes totally murky?

Over that ensuing weekend, I had some back-and-forth emails about the experimental trial and gained a bit of advice on the issue from those knowledgeable. Der Mann tracht...I was ready to discuss somewhat intelligently with Dr. Demon the pros and cons of being on 5-aza alone vs. 5-aza plus MNL3294–until the doctor entered the room with my new CBC results. Then, in an instant, any prospective discussions about the two programs ended.  Men plan. God laughs.* Art: www.yiddishwit.com

“There is no way you can wait until January 9”, said Dr. Demon.” “Your disease started proliferating in September when your WBCs went to 93,000 or so. With increased Hydroxyurea, slowly that number came into the 50,000s. Today, it’s back up to 93,000. Your disease is proliferating—fast now. There is no way you can afford to wait until January 9 to start a regimen. In fact, you have to start 5-aza—today.”

And so I did. Meanwhile, by Day Four of my first round, my WBCs had elevated even a bit higher—to 102,000—and the doctor and I agreed that though it remained unsettled whether there was any meaningful difference between a five-day or a seven-day regimen of 5-aza, it couldn’t hurt to attack these little demons more aggressively, so I was switched to the seven-day regimen. Of course, the seventh day ended on my birthday and I experienced another first—having three nurses sing Happy Birthday to me as I was receiving chemo. (Do I know how to throw a party, or what?)

Ah, but much more was in store for me. As I finished my first round of 5-aza, God was laughing up His sleeve, knowing that quickly events would push me to the very edge of that cliff.HG eggs and ham More twists and turns were coming my way on the long and winding road and they were coming faster and faster.

Take me back to the Contents

© Harvey Gould and MPNforum.com, 2014. Unauthorized use and/or duplication of this material without express and written permission is prohibited. Excerpts and links may be used, provided that full and clear credit is given to MPNforum.com with appropriate and specific direction to the original content.

Comments on: "The Long and Winding Road/ Cliff" (3)

  1. Leslie Magidsohn said:

    Your humor and attitude will see you through. Watta guy you are, my dear HIGH SCHOOL
    FRIEND! Tight hugs and many prayers coming your way daily. Love ya xoxoxoxox
    Leslie

  2. Prayers are with you on this new journey. Don’t leave us hanging, please up date us. With your humor and attitude, you will get through this with flying colors

  3. Kathy Van Meter said:

    Very suspenseful, Harvey. Really want to hear the rest of the story. Just wish this was fiction. Peace and Blessings.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: