Monday, May 21, 2018

I've go to admit it's getting better: More good news about my CLL (chronic lymphocytic leukemia)

Most of my blog posts can be followed here.

The full story of my CAR-T therapy, the incredible rollercoaster and the amazing results can be found there 

I have been too slow to post good news, but let me share that my deep sequencing testing done on my bone marrow biopsy at day +28 post CAR-T showed no copies of the CLL DNA. I discuss what this means in more detail in my blog posts here:  My celebrations are detailed in the previous post.

Also on the CLL Society website proper is an interview with Dr. Dearden about combos in CLL ( they are the future for high risk patients) and other topics plus tomorrow we are posting Dr. Brown on bleeding concerns with ibrutinib. The news is reassuring.

Slowly getting back into the swing of things. Went to the San Francisco CLL Society support group yesterday and talked on the phone with the NYC group where Dr. Furman made a guest appearance to help answer questions.

Feeling stronger myself.

Stay strong.

We are all in this together.


Wednesday, March 21, 2018


Patty and I have been enjoying Seattle. We’ve been here for 3 weeks prepping for the JCAR14 trial at SCCA/Hutch. Tomorrow is my big day- I get the CAR-T cells.
I’ve been blogging on my experience on the CLL Society website and we are adding interviews and research on CAR-T (see: but that may slow down if I am part of the 90% that end up in hospital. Check out our CAR-T educational comic book while you are there on our site.
Anyway, I wanted to stay in touch and look forward to continuing the conversations when I am on the far side of this with no evidence of CLL left in my blood, marrow, and nodes.
Stay strong. We are all in this together
Brian Koffman MDCM DCFP, DABFM, MS Ed
Founder and Medical Director, CLL Society Inc.
PO Box 1390
Claremont, CA

Sunday, March 18, 2018

Goldilocks and the CAR-T cells

I had planned to write more often, but long hospital days, followed by long naps and long walks most days have precluded me doing much more than remembering my trial schedule and completing a hurricane of critical paperwork and lengthy CLL Society’s to-do lists while I am still able to work.

Despite my sincere intention to be here and now in a more public way, blogging has taken a second seat to more mundane needs. And to my own health priorities like sleep and exercise.

But I have clinical studies to share now.

Two days ago, I got my results, and the news was mixed.

My blood chemistries were all good except for a slightly elevated LDH consistent with a cancer on the move.

My blood count showed a continuing slow downward trend in my HGB (today it was 11.9) and a slightly climbing lymphocyte count in the high teens now. Platelets and neutrophils remain within the normal range.

Just a few months ago my lymphocyte count was 1 and HBG was 14. My CLL is taking off.

Bone marrow biopsy (BMB) was hypercellular at 65% suggesting it has had to expand due to infiltration with leukemic cells. In fact it showed that more than 80% was filed with lymphocytes, leaving less than 20% of the factory floor to make all my red cells, platelets and other white cells.

By flow cytometry about half of the white cells were clonal, consistent with CLL.

The one surprise was that no 17p or 11q deletion was detected Hard to explain. May be a sampling or technical error, or that a different CLL sub-clone without those deletions has become predominant in my marrow.

My last BMB five years ago had normal bone marrow cellularity at 40% and only 20% was lymphocytes. That was on ibrutinib while it was working well.

My CT scans last week were filled with” innumerable” enlarged lymph nodes, but at least they were all less than 4 centimeters in their longest diameters.

My PET scan showed those nodes to be metabolic active, but the highest SUV was only 4 making Richter’s Transformation (RT) less likely. However, PET scans may be less helpful in predicting RT in those failing novel therapies.

For comparison, two and half years ago, I had no enlarged nodes with imaging.

 Clearly my CLL is on the march in the blood, marrow and nodes and it is time to treat.

So here is where Goldilocks comes into play.

If one’s CLL “tumor burden” is too high, especially if one has “massive” lymph nodes greater than 5 cm. and certainly greater than 10 cm. there is suggestion that the army of CAR-T cells may have too many enemy combatants to wipe out or they may be too far out of reach, even for these hyped-up serial killers.

If one’s tumor burden is too low, there is a chance that the genetically reengineered cells won’t get enough stimulation to expand and will just die off without ever engaging in battle.

So there is a sweet spot, Goldilocks’ just right bowl, where the T-cells are stimulated to expand but are not overwhelmed by the amount and depth of the cancer. The way T cells kill is up close and personal. They need to wrap their arms around their targets, and if they can’t get right up against each and every CLL cells in a massive node, the cancer will live on.

In fact, published CAR-T responses tend to better in the blood and marrow than in the nodes.

My odds of a deep and durable response are excellent based oy my labs and imaging.

However, the risk of cytokine release syndrome (CRS) and neurotoxicity may also be correlated with the total amount of disease burden (not so much the size of any one node, but the sum of the diameters of all the nodes), and by that criteria, I have more than enough disease to suggest I will have a wild roller coaster ride ahead of me.

While this is an evolving science and all of the data are immature, especially in CLL, the way I read the tea leaves is that I am predicting a great final outcome but am buckled up for the fight of my life ahead of my restaging one month post CAR-T infusion

Looks like I will need to get worst to get better.

Wish it weren’t so but it is what it is. I say bring it on.

Stay strong.

We are all in this together.


Tuesday, March 6, 2018

3/6/2018 Brian's Apheresis at SCCA for CAR-Ts to treat CLL

Patty reporting from Seattle Cancer Care Alliance March 6, 2018: Apheresis! Using a sophisticated centrifuge, Brian’s T-cells are being spun off and will be genetically re-engineered to form the CAR-Ts. Brian’s arms are busy at the moment, but this little inconvenience is outweighed by great optimism. To see this procedure from the T-cells’ perspective, check out our CAR-T Comic Book here:…/simple-fun-introduction-car-t/ More later. Patty

Wednesday, February 28, 2018

Me and my CAR-T- Part 1 on why I have moved to Seattle for 2 months to treat my CLL

First things first.
Thank you.
I have been overwhelmed by the support and prayers I have received in the past few days by email, comments on the website, Facebook and messages. For years I have preached that we are all in this together. Now I am living it. I cannot begin to express my gratitude for your kindness and prayers.
Please forgive me if I don’t get back to you personally. I read and savored every contact, some of them multiple times, but it would sabotage my efforts at balancing my time at and away from my MacBook if I tried to respond to them all
Know that you are appreciated. Thank you from the depths of my soon to be cleansed bone marrow.
After prayers and well wishes, the next most common emails are the one with questions.
And the most common questions are where and why.
Let’s start to cover the where question today.
It goes without saying that CAR-T is a pioneering therapy. It is not yet commercially approved for any CLL indication though it is being used to save the lives of children with acute leukemia and adults with specific lymphomas.  Approval in CLL is unlikely for any commercial genetically engineered T-cell therapy before 2019.
Getting a commercial product off label, even though they target the B-cell surface marker CD19 and would likely work well in CLL, is a steep uphill climb due to their expense. The relatively low numbers of patients and the short-term follow-up data in CLL CAR-T trials makes the necessary arm twisting of the payers to cough up a half a million for an experimental drug a task even Sisyphus that would reject.
So, I needed to find an open clinical trial accepting patients like me with chronic lymphocytic leukemia.
I have no problem with the idea of enrolling in a trial. On the contrary, we have pointed out countless time on our website and in my blog that we cherish trials as the place to get the best and latest care.
I am alive today because I entered an early trial six years for the game changing small molecule, PCI-32765, now known as ibrutinib. I am deeply grateful for the time and quality of life that choice provided me.
I flew to snowy Columbus, Ohio in the winter of 2012 from warm and sunny SoCal to stay alive and fight again. It was the best move I could have made.
And I am planning to repeat a similar process now.
Today there are few choices for CLL patients wanting CAR-T therapy, though the number of options is growing. All take place at large cancer centers, all with experience in the other “old school” cellular therapy, namely hematopoietic stem cell (bone marrow) transplants or HSCT.
So why did I choose the Seattle Cancer Care Alliance (SCCA)/Hutch?
First, one can’t enter a trial that isn’t open.
Since these living drugs are all bespoke and as I said before expensive and labor intensive to manufacture, the trials tend to be small and they open and close quickly. For example, U. Penn, a true pioneer in CAR-T treatment for chronic lymphocytic leukemia, has no openings at this moment.
If you’ve heard me speak on self-advocacy, I teach that we have time, but we don’t have forever. Windows open and shut and one sometimes has jump through quickly.  
And there is cost to doing nothing and waiting too long. This is especially true in CAR-T, where there is an early suggestion in the data, similar to the case with HSCT, that efficacy is improved with lower tumor burden, especially with the lack of bulky nodes. Equally important, there is increasingly good evidence that the risk and severity of the adverse events, specifically cytokine release syndrome and neurotoxicity, are related to disease burden.
Waiting for a trial to open when the CLL growing is not always a good option.
More on my Seattle choice later. I suddenly need to rest.
Stay strong.
We are all in this together.
If the CLL Society has helped you or a loved one, please consider making a donation

Friday, February 23, 2018

Starting CAR-T Therapy For my CLL (chronic lymphocytic leukemia)

Friends and CLL Society supporters:
This isn't easy.
After consulting with my wife, my family, my closest friends and key supporters of the CLL Society, I decided it was best to again share details of my personal battle with CLL in a very public way.
After a wonderful run of 69 months on Ibrutinib, my CLL is now officially relapsing. I am very grateful to Dr. Byrd and the team at Ohio State for their great care over the past 6 years.
But it is time to move on.
Very soon, I will be undergoing innovative CAR-T therapy as part of a phase I/II clinical trial.
I am confident that this CAR-T trial offers me the very best chance for a long and deep remission.
I will be frequently blogging and sharing all details about my CAR-T experience here. My first more detailed post that share more about my decision is already up. Please take a look, stay in touch and share your thoughts. More details will be coming soon.
Independent of and prior to this big decision, we have produced a fun comic book about CAR-T. It's up on the website too.
We will be bringing much more information and support about CART-T over the next few months on a new CAR-T section of the website
I hope others will benefit from following my CAR-T story as I begin this new adventure.
Your thoughts, prayers and support are greatly appreciated.
Stay strong.
We are all in this together.
Brian Koffman