International MPN News, Science & Opinion

The Long and Winding Road…doesn’t pass GO

by Harvey Gould

Harvey Profile[1]

Do Not Pass GO, Do Not Collect $200.  Go Directly to Hospital

Upon my MF diagnosis back in mid-2000 I was told, “You’ve likely got three to five years to live.” OK. It’s pretty shocking to hear your doctor pronounce your death sentence and it’s pretty understandable why that kind of report can take your breath away. It did with mine.

But the next part of the pronouncement, intended to add comfort and to provide a possible solution, actually added more, not less, angst to the terrible news  “…unless you undergo a stem cell transplant and you would qualify easily.”

Why the advice about an SCT at the time provided angst but no comfort to us is because in 2000 UCSF’smonopoly hospita protocol was not to perform an SCT on anyone over 55. I was due to turn 55 within six months of my MF diagnosis. So, we didn’t know whether, by refusing the SCT at the time, I was forever foreclosing the option of an SCT, and that was scary. What was scarier to us is that the survival rates for those undergoing an SCT were grim back in 2000, let alone that effective methodologies for treating graft-versus-host disease and graft-versus-leukemia were still in their early evolving stages. In any event, in the end, we elected not to undergo an SCT.

In short, we were looking for better mortality statistics before agreeing to a transplant.

Instead we chose to give science time to learn more about the disease, perhaps find relevant mutations, and discover more refined information about proper chemo agents and dosing levels as part of the transplantation and the post-transplantation-follow-up processes.  In short, we were looking for better mortality statistics before agreeing to a transplant. In the interim, we agreed that I’d keep all necessary follow ups, undergo all tests and procedures as appeared helpful, and keep attuned to evolving science on MPNs.

We knew that by refusing the SCT in 2000 and hoping that science would come up with better treatments in the upcoming years we were literally betting my life in return for an unknowable future. Still, we took a deep breath and thirteen plus years later still have no regrets over that decision.

Here’s one indicator as to how much science has progressed in the intervening years:  By 2013 the UCSF age-limit protocol for performing a transplant had increased from 55 to 74 and even then, the 74 was “soft” depending on this ‘n that.

Meanwhile, by mid—2013 I was still in the chronic phase and I was beginning to think, Maybe, just maybe Mr. Big shot AML misfiled my folder somewhere in the “real” cloud and he figures that self-reporting his screw-up to his HR Director, Satan, wouldn’t be a good career move. So maybe he’s covering up his failure by just letting me slip under the radar and I can just run the table out on this sucker.

Fat chance. Turns out Mr. Big Shot has a damn good filing system. It’s just that he’d decided he’d do this on his time schedule, and not on mine.

Like a slap in the face with a cold towel, in early November 2013 we learned that my MF had morphed into AML and my hem/onc at UCSF, Dr. Damon, (affectionately known within our family as Dr. Demon) laid out a plan of attack that required, among other things, quickly getting onto a chemo regimen on an out-patient basis, in an effort to retard progression of the disease, and better, to knock it back down, temporarily, to the chronic, phase—in preparation for an SCT.

On the flip side of the coin, we were then told that if I took no treatments I’d likely be dead within six months, so unlike the first time around, this time, for Karen and me, there was nothing to talk about. We would proceed. Science had significantly gained in its knowledge of treating transplant patients and unlike in 2000, in 2013 we were faced with knowing that death was virtually guaranteed in the near future absent an aggressive chemo intervention. That left us to decide which chemo course to pursue, Dr. Demon’s proposed, 5-azacytadine, or join an experimental program at Stanford which was combining 5-azacytadine with an additional drug, but a program for which I would not qualify for roughly an additional four weeks.

By December16, my WBC numbers had again proliferated to  90,000.  There was no time to waste and I started the 5-aza regimen that day.

On an outpatient basis I had 5-aza administered on seven consecutive days; then I was to go “off” for three weeks, and start my next round on January 13. By the end of my first round, my WBCs had actually elevated a bit—to 104,000, but the hope was that they’d plateaued and with a subsequent round, or more of 5-aza, my WBCs would start receding. Ah, but now the HR Director was Himself following my case!

On January 2, 2014, in between the time my first round of 5-aza had ended and the second round was scheduled to begin, I had a follow up appointment. Karen and I already had planned a “chemo vacation” at our country house before I’d start Round Two on January 13, a nice time to kick back and relax. (Anyone hear God snickering in the background?)

Uh oh, I thought. Something’s wrong. Usually, that’s the first thing he gets out of the way.

I’d brought a few empty prescription bottles with me, had placed them on the doctor’s desk as a reminder to have him refill them, and I looked at my watch to get an idea about by what time we should be able to be on the road for our country get-away.

When he entered the examining room he looked at the prescription bottles and said “We’ll talk about those later.”

Uh oh, I thought. Something’s wrong. Usually, that’s the first thing he gets out of the way.

“How have you been feeling?” the doctor asked.

Double uh oh, I thought. He knows I haven’t been feeling good so he’s looking for something more.

“Even with the exhaustion I always have from the MF I’ve been unusually tired the last week or so, and have been returning to bed for hours immediately after breakfast. That’s new and I am finding it harder to climb the flight of stairs to our bedroom without stopping on the midway landing, but I’m assuming these are attributable to after-effects of the chemo.”

“I’m afraid it’s much more than that. Today, your WBCs are at 235,000. That’s a huge number and they’ve more than doubled since the end of your first round of 5-aza just ten days ago. Sometimes it can take several cycles for a patient to respond to 50aza. Even if they don’t respond, usually you don’t know that until the end of at least cycle two, but we have our answer from you. Your WBCs are exploding even in the face of seven days of 5-aza. It’s obvious that the 5-aza has failed to do anything for you and, in fact, your disease is roaring forward and is out of control.”

Oh, shit. Now what? I thought.

Karen looked at me, closed her eyes and shook her head lightly, fearing what was coming.

It didn’t take long.

“If it were me, Karen, I wouldn’t bother even having him go home to pack.”

“Harvey, I’ll say this as simply as possible. You need to be hospitalized. You urgently need a 30-day inpatient course of induction chemotherapy on a far more powerful scale than the 5-aza you’ve been taking. While this new chemo, as with the 5-aza, will be intended to help induce your disease into temporary remission to help prepare you for the SCT, frankly regardless of moving forward with an SCT or not, we need to attack your disease progression now because if we don’t move aggressively and without delay,  rapidly it will overtake you. You have no time to waste.” 

Karen asked, “Do you mean that he should be hospitalized within the next day or two?”

harvey thumbs up

“If it were me, Karen, I wouldn’t bother even having him go home to pack. Right now, literally you should walk him across the street, and get him admitted to the hospital. I’ve already started preparing admission orders as well as orders for him to have apheresis tonight. In short, we must attack his WBCs before they overwhelm his system. With WBCs at 235,000, his blood is thick and sludgy and until we can bring them down, and the apheresis will bring them down, he’s a walking heart attack or a stroke victim. Once we’ve got his WBCs lowered to some more sane level, tomorrow he’ll go on an induction course of chemotherapy.”

Apheresis is a dialysis by which as blood is drawn from one arm it goes into a machine that removes specified components of the blood (in my case WBCs), and deposits those into a bag. Then, via an IV line in the other arm, it returns the blood to the patient, now “cleansed” of the offending agent.

This was most definitely not the end-of-day meeting we’d intended, but as always, even in our shock and bitter disappointment, we knew that we had to get ourselves ready, and, of course, that much more was just around the bend on this damn road.
Take me back to the Contents

©Harvey Gould and MPNforum, LLC, 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 Harvey Gould and MPNforum with appropriate and specific direction to the original content.

Comments on: "The Long and Winding Road…doesn’t pass GO" (4)

  1. Leslie Magidsohn said:

    Harvey, my dear, big lump in my throat
    As I sit here reading things I don’t want
    To read . My heart is shattered for you
    BUT.,…. I believe you CAN AND WILL
    FIGHT THIS. It just sucks that’s all I can say. My deep prayers for you will
    Be with you always.
    Be strong as you have been all along
    And know that a heroe lies in you ( ironically listening to Celine Dion and those are the words of her song)
    BE STRONG AND CARRY ON. Looks
    Like I am going to have a long talk with you know who as I lay my head on my pillow tonight.
    Tons of love to you and Karen
    Keep that handsome chin up.
    Hugs always, Leslie

  2. I am so sorry to hear about this new mountain that you must climb over, but climb over it you will. Please, please keep us updated. Sending prayers and thoughts your way.

  3. jsandresen1 said:

    Hang in their Harvey we are all with you.

  4. Bonnie Kaye Evans said:

    Damn, Harvey! Double damn! I will not be the only one disappointed to hear that the first round of chemo failed. What choice do,you have but to get that SCT and like yesterday? I know the apheresis will get your WBC down where the chemo can be done. Joe had to have that before he could get chemo for mantle cell lymphoma. It was needed to prevent tumor lysis where the killed cells produce toxins that can kill you. So many people on the support sites have been worried about you and asking about you. now we know, and it ain’t good. Prayers to you and your family. May God intervene and keep you here on earth.

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: