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Timing Is Everything in CLL

Timing Is Everything in CLL
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Published on April 21, 2020

elaine infusion roomI’ve always felt that timing is everything. Not whether one is on time, or has time to do something, though both would be a plus.  Rather, those serendipitous confluences of events that work out well, or sometimes even badly. 

Not so long ago, when I was diagnosed with CLL in 2012 at the age of 72, I was told that a typical life span after diagnosis was 3 to 5 years. That was an eye-opener, particularly since I felt pretty well.

Probably because I was in good shape, active and upbeat, the oncologist I chose to be my guide hypothesized that it would likely be a while before I would need treatment. He offered this ray of hope from, what we now know, was the time before IGHV mutation testing.

 In fact, his prediction proved overly optimistic, and my numbers began to tank within two years.

Little did we know, back then, how the words, “mutated” and “unmutated,” would come to illuminate our understanding of how our mutation profile could affect disease progression and treatment response.

Just think how far we’ve come. A mere seven years ago, no one was talking about or testing for IGHV mutation, not even at a major research hospital like Dana-Farber Cancer Institute where I was being seen.  In fact, there weren’t even a lot of treatment options back then.   The main hope was FCR, which carried the mystery of working for some and not others. Now, of course, we know that those of us with an unmutated IGHV do not respond well to FCR. 

With more awareness of mutation status and DNA profiling, some of the mysteries are being solved. Even better, there is suddenly a wide array of drugs that attack CLL in a variety of ways, allowing choices that cater to those profiles.

As soon as I got my diagnosis, I began spending hours on the web every day, researching my new reality. I quickly learned to sort out the reputable sites from those with questionable information. 

The article that had the most profound effect on me was an essay by the scientist Stephen Jay Gould, written after his diagnosis with mesothelioma.  In “The Median Isn’t the Message,” Gould posits that we too often accept that success of treatment is measured by the average—the mean or median—when looking at statistical data, as in “Most people die in 3 to 5 years.”  He also deduced that people with cancer tend to do better in outliving predictions when they have a positive attitude.

Indeed, schools tend to teach to the “average” learning style, and doctors tend to treat patients in a way that has performed better for most people with a particular disease.  It makes it easier to plan and implement when you don’t have to cater to individual needs and styles that fall outside the crest of the curve. 

Gould pictured a bell curve, with people to both the left and right of the curve’s peak. While most may be bunched around the peak, there will always be outliers in both directions. The outliers defy the odds. For a wide variety of reasons, they approach and respond to their disease and treatment in a way that is different from average. Gould determined that he had a good chance of being an outlier, and he was right.

With a positive oelaine granddaughterutlook, and relatively mild symptoms, I decided that, like Gould, I could be an outlier at the extreme right edge of the curve. In fact, I have felt like an outlier in many ways most of my life, so this wasn’t a stretch for me.

It turns out that I didn’t have to rely on positivity alone to achieve my goal. Timing was on my side. Indeed, timing was on the side of the entire CLL community. 

As my labs began to shift more rapidly, my research had me following clinical trial results showing success with a new targeted immunotherapy drug for patients who had relapsed after other treatment.  Dana-Farber was starting a clinical trial to see if idelalisib (Zydelig) could be effective as frontline treatment. I jumped at the chance to have access to a promising new drug—a pill, no less, that could be taken at home. This was a whole new scenario—a first in the world of CLL—created just in time for my need. 

There was one little glitch, so it wouldn’t be a totally home-based experience. The clinical trial was set up to see if the new CD20 antibody ofatumumab (Arzerra) would help increase the effectiveness of the idelalisib. This meant that two months into the trial, I had to go in for weekly, and then monthly, infusions for a few months. Not fun, and a real logistical nuisance, but I was willing to do anything to get the idelalisib. Friends and family helped make it work.

During the 19 months I was on idelalisib, I began to watch trials for other new CLL drugs, including ibrutinib (Imbruvica), and then venetoclax (Venclexta).  Just as the idelalisib began to fail me, timing was again on my side. Ibrutinib was approved for treatment by the FDA just in time for me, and I happily began taking it one week later.  Ibrutinib has been very good to me for three years.  It is reassuring to know that, should it begin to fail me, venetoclax is waiting in the wings.

I feel as if I’ve been riding on the crest of all the waves of new developments in understanding and treating CLL, landing me safely on the beach each time.

elaine rainbowI live in gratitude for all the researchers with a passion to cure our disease—for all those who entered clinical trials to pave the way for others—for all the doctors and nurses who have our backs—to sites like Patient Power that seek to keep us informed—to listservs where CLL patients can commiserate and learn from each other’s experiences.

Newcomers to CLL are so fortunate to join the journey at this stage.  The relatively recent breaking of the DNA code has opened doors to new knowledge, tests and treatments.  With an increased understanding of, not only our mutation status, but of specific DNA markers on our cells, there is no longer an “average” CLL patient. 

Sophisticated testing can determine which of the many new drugs will be most effective for a specific set of markers.  Treatment can now be tailored to DNA and mutation status, and there is a growing arsenal of options from which to choose. No longer do newly diagnosed people need to hear “3 to 5 years.”

Those of us who have lived through the rush of activity in the last few years are astonished—and thrilled—to hear the “cure” word tossed out as a real possibility. 

Whether we’ve been part of the community long enough to witness transition from the dark ages to enlightenment, or we are a newbie, there is hope that timing will soon be right for us all to be outliers.

May it be so. 

About Elaine

Creativity, spirituality and love of language are the threads that weave the fabric of my approach to life.  My favorite times are with my fabulous grandchildren, two sweet and capable college-age boys and a delicious 11-year-old granddaughter with whom I create art, make music, and engage in silliness.  My fervent hope is to be around for a long time, so I can revel in their accomplishments. 

After many years of working as a speech/language pathologist, writer, editor and calligraphic artist, it is gratifying to now have time and space to nurture myself, commune with nature, garden, travel and do whatever I feel like doing in the moment.

I try to live by the words of Maimonides:

“If I am not for myself, who am I?
And if I am not for others, what am I?
And if not now, when?”

~Elaine Adler

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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