- The Myeloma Beacon - https://myelomabeacon.org -

Myeloma Lessons: The Year (Or Two) In Review

By: Andrew Gordon; Published: July 8, 2015 @ 3:15 pm | Comments Disabled

In December of every year, we are inundated with “year in review” lists. The best movies and music albums; notable marriages and deaths; advances in medicine and science. Frankly, I never have been much interested in reviewing the past, choosing instead to look ahead.

But in thinking about the two years since I was diagnosed with multiple myeloma at the end of June 2013, I see that much can be learned from looking back at my experiences, including what I have done right and what I’ve done wrong.

I have captioned this series of columns: “Myeloma Lessons.” My objective in writing them has not been so much to teach but to pass along what I have learned in the hope that I can help those facing similar choices and challenges.

In looking back now, I see two larger lessons from which I hope to draw more general guidance for the future.

Lesson #1: Do Your Research & Be Patient

I tend to be a bit impatient, so it is a constant internal battle to take the time to assemble the necessary in­for­ma­tion and carefully consider it before making a decision. My failure to properly examine the science and exercise patience illustrates a critical error I made shortly after being diagnosed.

On a Friday evening at the end of June in 2013, I went to the emergency room after a call from my doctor informing me that I was severely anemic and needed an immediate transfusion. I was admitted to the hos­pi­tal.

On Saturday, the doctor visited and told me that he was 90 percent sure that I had myeloma, but that we needed to do a bone marrow biopsy to confirm the diagnosis. He said that I could remain in the hos­pi­tal over the weekend and have a biopsy first thing Monday morning, or I could go home and call in on Monday to make an appointment. The appointment might be as long as two weeks down the road.

Being impatient, I elected to stay in the hospital. It turned out that the Monday morning biopsy was a “dry tap.” But the doctor did not seem to be too concerned. I also was scheduled to see the hospital’s myeloma expert Tuesday – a very quick appointment, to say the least. I went to the appointment Tuesday, still reeling from the diagnosis that I had an incurable form of cancer and not having done any research on the disease.

The doctor strongly recommended induction therapy with Velcade [1] (bortezomib), Revlimid [2] (lenalidomide), and dexamethasone [3] (Decadron), and I immediately agreed to begin the treatment the following week. We briefly discussed the “dry tap,” but the doctor assured me that the treatment would be the same regardless of the result of the biopsy, so there was no need to repeat it right away.

Because the biopsy was pretty painful, due in part to the doctor repeatedly trying to find some aspirate, I was in no hurry to repeat it. This proved to be a potentially significant mistake.

What I did not realize at the time, and for a number of months thereafter, is that the aspirate must contain a significant number of myeloma cells in order to do the genetic testing which determines a myeloma patient’s risk level. By the time I realized this, several months later, the induction therapy had been so effective that there were no myeloma cells in the aspirate produced by the follow-up biopsy to do the genetic testing.

The bottom line for me is that, two years post-diagnosis, I have no idea of my risk level. Knowing this could well have an impact on my current therapy choices, particularly what type of maintenance therapy to pursue.

From this I learned a valuable lesson: do your research and try to practice patience. I am still paying the price of uncertainty regarding my risk level by learning this lessons too late.

Lesson #2: Use The “Will I Regret It?” Test

In the course of the past two years, I learned something else about myself that has informed the many de­ci­sions I have had to make.

Prior to deciding whether to have a stem cell transplant, I felt the need to seek a second opinion. My treating doctor is a strong proponent of a transplant (maybe even two) for every myeloma patient who is physically able to handle one. So I sought out an expert who was at the other end of the spectrum.

The doctor I saw for the second opinion generally does not favor a transplant unless there is no reasonable alternative or if it is part of a clinical trial. When we met, she had thoroughly reviewed my file, and during our discussion it became clear that she was not in favor of a transplant. I explored with her all of the pros and cons of transplant versus no transplant.

She sensed that I was wavering and she asked what turned out to be the key question: If I did not undergo the transplant and things later went south, would I regret not getting the transplant? The answer was “Yes.” When she heard this, she conceded that it was probably best that I go forward with the transplant.

Realizing that answering the “Will I regret it?” question was so important, I used that standard to make an­oth­er important decision: Should I retire?

I had been thinking about retirement prior to being diagnosed with myeloma, with the thought that I might take the leap in 2015, but I had not reached a decision.

Once I was diagnosed, however, and experienced a whiff of mortality, I started to think about retirement more seriously.

Many friends and colleagues tried to convince me to keep working, but what I kept thinking was: If I keep working and things go south on me a year or two down the road, would I regret not spending more time with family – especially those cute little grandsons? The answer clearly was “Yes.”

Still, I had many, including my fiancée Audrey, encouraging me to continue to work. So I compromised and took a part-time position.

───────────────── ♦ ─────────────────

I have learned a great deal in the past two years. Many of the smaller lessons are detailed in my previous columns, among them: be vigilant; don’t just rely on your medical team – do your own research; take ad­van­tage your status as a cancer patient to help and inspire others.

Looking back on the past two years, the larger lesson for me is: Look inside yourself and use what you find to guide your choices.


Article printed from The Myeloma Beacon: https://myelomabeacon.org

URL to article: https://myelomabeacon.org/headline/2015/07/08/myeloma-lessons-the-year-or-two-in-review/

URLs in this post:

[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/

[2] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/

[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

Copyright © The Beacon Foundation for Health. All rights reserved.