Reflections on year of both great progress and great sadness in the CLL world

Happy New Year.

This year we lost 3 members of our local Orange County CLL Society support group, and I lost other 3 other dear CLL and CAR-T friends that I met on my personal journey.

So sad. My heart still aches. CLL is still a killer. We all know too many tragedies and too many close calls and too many living in fear.

We at the nonprofit CLL Society have ambitions to change that through targeted research as funding for CLL studies is starting to dry up. It’s largely seen as a solved problem. That is a tragic joke that we will work with LLS, others and our fellow CLL survivor to help correct. Stay tuned. We are working with top researchers to be smart about how to marshal our limited resources

Today our biggest push remains to ensure that everyone gets their best possible care by getting smart about their CLL. That is what blogs such as this do.

If you haven’t already, please check out on website. Last week’s newsletter is chock full of helpful info for any CLL patient or caregiver at any point of their journey.

On Feb. 9 we will hold our first of the year post- ASH educational forum at City of Hope and will live stream it. Registration is now open. 10 more forums will follow across the country.

The news in 2019 overall has been good with amazing progress, but it is not good enough and not everyone gets the benefits of all the progress.

Let’s dedicated ourselves to working together. One of our motto for 2019 will be no patient left behind. And of course: Smart patients get smart care.

Stay strong. We are all in this together.

Brian

Website: www.cllsociety.org

Closing One Door, Opening Another.

December 10, 2018 was a monumental day for me. A huge transition.

After 38 years of caring for generations of patients as their family doctor, I retired today from direct patient care.

Bittersweet. Lots of hugs and more than a few tears.

It’s been a tremendous privilege to care for so many people, to touch so many lives.

Today, for example, I said goodbye to my 104-year-old patient, to another long time patient that I had helped decades ago out of downward spiral to reinvent herself, a married gay man who flew in from Houston to consult me one last time, a seventy-year-old who reminded me that I caught his cancer early and likely saved his life over 20 years ago, and a fellow leukemia patient that I helped with his hospitalization.

Family medicine threw me into the lives of blacks, whites, Latinos, Asians and others, newborns and the very elderly, nearly every religious group and agnostics and atheists, too, the fabulously rich and the desperately poor, the morbidly obese and the anorexic, those with poor health choices and health fanatics, many omnivores and a few fellow vegans, professional athletes, weekend warriors and couch potatoes, those with special needs, scientists and poets and painters, preachers and rabbis, musicians and dancers, lawyers and felons, students and teachers, fellow doctors, CEOs, factory workers, police and firemen, celebrities, the homeless and so many more.

I have dealt with the trivial and the deadly, often on the same day, often in the same hour.

I have shared the darkest and happiest moments in some of my patients’ lives.

I have shared birth and death, the latter, too often and too soon for so many.

I will miss all my patients dearly.

But I leave that incredible job that has so defined me for the last 4 decades to care for folks in a different way, to care for a cohort, to save lives through education, support, advocacy and research that I will be doing as I move to the CLL Society full time after 4 years of what was essentially a more than full time unpaid job.

I will now work for the CLL Society from 8:00a.m. to 6:00p.m., instead of from 8:00 p.m. to 2:00 a.m., and on the weekends.  More importantly, in accepting the position of Chief Medical Officer and Executive Vice-President of the nonprofit CLL Society, I will no longer have to divide my energy and will be able to focus solely on how to improve the lives of my fellow CLL patients.

2019 will be an amazing year. While many CLL issues remain unsolved, and we at the CLL Society will be directly addressing those through our research efforts, the biggest issue in the CLL world is not what should be done, but getting the message out to all the patients and their doctors about what are now proven to be the best treatments.

The problem is getting out the good news.

We have always said, “Smart Patients Get Smart Care.”™

We are now adding, “No Patient Left Behind.”

I will miss the one-on-one caring that has so defined me, but I hope to make an even bigger difference by improving the lives of all those who are touched by CLL.

Stay strong.

We are all in this together.

Brian Koffman