Saturday, February 16, 2019

CMS Approval of CAR-T Therapy

CMS approves CAR-T therapy payment, but with significant strings attached. For more details see:
This is a positive first step, but only the first step. We will be interviewing experts on funding over the next few weeks.
I am proud of the small role I played in this by going to CMS and lobbying on behalf of future CAR-T patients.
If you want a personal response, or just want to stay in touch, please email me at I have no other way of contacting. 
Thanks. Stay strong. After all, we are all in this together. 
And please visit our website: for the latest news and information.
Google serves cookies to analyse traffic to this site. Information about your use of our site is shared with Google for that purpose.

Tuesday, January 29, 2019

The evolving role of clinical trials in CLL (chronic lymphocytic leukemia)


As many of you know, I am alive today because of my entering two phase I clinical trials, one for PCI-32765 that later became known as ibrutinib and another for a CAR-T drug.

Clinical trials are always great, right?

Well Dr. Furman has a more nuanced answer to that from our interview at ASH 2018. And he is clearly putting the patient first.

No-one is saying that clinical trials are not the best source of evidence, but what questions are being answered and at what cost to patients need to be carefully considered.

Lots more news on the website. Hard to keep up

And please don’t forget to register our upcoming educational forums in Duarte, Charlotte, Seattle, Portland and Houston in the next 60 days.

We are all in this together.


Tuesday, January 22, 2019

Upcoming free CLL Specific Educational Forums for Patients and Caregivers Across the USA

We will be holding a total of a dozen free CLL specific ½ day Educational Forums for patients and caregivers across the country over the next few months. These will cover everything from the basics to the latest research from ASH presented by the local faculty with sessions by patients too. Each one is a little different, as we rely on the local experts to talk about their CLL strengths and research.
The next one is in Duarte, CA with faculty from City of Hope on Feb. 9, then Feb 23 in Charlotte, NC, then Seattle, March 2 and Portland, March 9. I will be at all of these, speaking on being our own advocates and would love it you could attend and say hello. For more info and to register, please go to:
Later we will be at MDACC in Houston, the NIH in Bethesda, Mayo in Minneapolis and more. 
Stay strong.
We are all in this together.
Brian Koffman

Saturday, December 29, 2018

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.

Wednesday, December 12, 2018

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

Thursday, November 29, 2018

Off to ASH 2018

Swamped so this will be quick, but I haven't forgotten the blog.

I am off to ASH 2018 where we are busy from 7 AM to 10 PM most days.

I go as a:

  1. Doctor to help my CLL patients
  2. Patient to help myself
  3. Reporter to bring the latest news
  4. Researcher presenting the largest ever survey of CLL patients to 30,000 hematologists
  5. Interviewer with all the top CLL investigators and friends from the nonprofit world
  6. Advocate to push for the right research and share the patient voice
  7. Interviewee as I am on camera myself several times answering questions about my journey an my research
  8. CMO of the nonprofit CLL Society looking for partnerships and support to keep our good work going
  9. Winner of one of the CURE 2018 CLL Heroes Award
  10. Friend catching up with so many of my pals from the CLL and blood cancer world of research, and advocacy
Much more during  after to report

Check out for the updates

Stay strong.

We are all in this together


Sunday, August 19, 2018

ASH 2017: Dr. Thomas Kipps on the ROR1 Antibody, Cirmtuzumab

At ASH 2017 held in December in Atlanta, Dr. Thomas Kipps from the Moore Cancer Center at UCSD in San Diego, CA talked about an exciting new target for very specifically killing off chronic lymphocytic leukemia cells while sparing normal cells, including normal B lymphocytes.
Dr. Kipps is one of the leading CLL researcher and has pioneered the work on a new antibody, cirmtuzumab that targets ROR1 (Receptor Tyrosine Kinase Like Orphan Receptor 1).
Because ROR1 is found nearly exclusively on cancer cells, an antibody against it may be the holy grail of antibodies, one that hits only the cancer cells with few off target effects.
Take Aways:
  • ROR1 is an embryonic protein that may help the embryo develop new distant organs.
  • By birth it has largely disappeared from normal cells, but it can be found on the surface of many cancer cells including CLL cells.
  • ROR1 is involved in keeping CLL cells alive even when their B-cell receptor (BCR) is blocked by drugs such as ibrutinib.
  • Cirmtuzumab is an antibody against ROR1 that it very specific in hitting just that target.
  • Early studies used extremely low doses and it was only given four times.
  • Cirmtuzumab has proven to be safe in this phase 1 trial with no serious side effects including no significant infusion reactions.
  • The ROR1 antibody has a long half-life of 21 days.
  • While the early trial was for safety, there was clear evidence of efficacy in the few relapsed and refractory patients who received the higher doses of 1 mg per kilogram with a median progression free survival (PFS) of 259 days using that suboptimal dose.
  • The combination with ibrutinib appears to be result in higher kills rates of the chronic lymphocytic leukemia cells by blocking two separate signaling pathways necessary to keep the cells alive.
  • There are ongoing clinical trials looking at the combination of cirmtuzumab and ibrutinib. Here is a link:
  • While adding antibodies has historically not improved ibrutinib efficacy, cirmtuzumab is different in that it not just targeting a surface protein but is blocking a pro-survival pathway critical for CLL.
  • Cirmtuzumab also may be important in killing of cancer stem cells, which if proven, should reduce the risk of late relapses.
We have many exciting treatments for chronic lymphocytic leukemia, but cure is still elusive. It is still very early in the story, but he can sense Dr. Kipps’ excitement and his hope that cirmtuzumab, when used in smart combinations might be part of the mix that leads to what we all dream of, namely being able to say: I used to have CLL.
Here is my interview with my doctor, Dr. Thomas Kipps from UCSD. It’s 17 minutes, but Dr. Kipps is a great teacher.
For more of ROR1 and cancer stem cells, see this prior interview from ASH 2014 with Dr. Kipps.
Thanks for reading.
Stay strong.
We are all in this together