Monday, February 20, 2017

Dr, Jeff Jones on the importance of genetic Testing Before Treating our CLL (chronic lymphocytic leukemia) or any cancer

In this short but pithy news interview, Dr. Jeff Jones from Ohio State explains why it so very important to know the details of your cancer before starting on any treatment.

It could be a matter of life or death,

Please enjoy this brief and helpful interview:

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Wednesday, February 15, 2017

Reflecting on the three Year Anniversary of the Approval of Ibrutinib in the USA

I realized this week that Feb. 12 was the 3rd anniversary of the approval of ibrutinib in the USA that changed the whole treatment landscape in CLL, so I thought I would reflect on all the progress that has taken place in the treatment of our disease during this time frame and all the issues that still remain. You can read my thoughts and share your own here:

What a wild and wonderful three years it has been- but we are not over the finish line quite yet.

Stay strong.

We are all in this together.


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Sunday, February 12, 2017

How Ibrutinib and other perhaps other BTK inhibitor work over time in CLL (chronic lymphocytic leukemia)

At ASH 2016 in San Diego, CA, I had the honor of once again interviewing Dr. Wiestner from the NIH (National Institute of Health) about the prototype BTK inhibitor, ibrutinib and how and why it works so well in CLL.

We have known for a while that for its survival and well-being, our cancer is dependent on BCR (B cell receptor) signaling. Blocking BTK (Bruton’s Tyrosine Kinase), blocks that BCR signaling and that blocking usually leads to our cancer’s retreat.

This is a well-understood critical tenet of why ibrutinib works as well as it does, but it is hardly the whole story as we are learning over time.

At the NIH, Dr. Wiestner and his team not only did some of the earliest clinical research on ibrutinib, but also has been doing the bench science on exactly how it works and its impact changes over time.

Please enjoy the interview here:

Stay strong.

We are all in this together.


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Thursday, February 9, 2017

Healthevoices Health Advocacy Conference 2017

I have attended a meeting sponsored by Janssen on online health advocacy the last two years and hope to be returning again this April 21-23. It is a strong meeting, full of good info, much fun and great folks. I highly recommend it and alway learn from it. It is more for individuals than organizations.
Patients and caregivers with HIV, colitis, psoriasis, schizophrenia, different cancers and many more conditions attend. 
I was asked to reach out to friends who have an online advocacy presence in the cancer world to see if they are interested in attending. The deadline has been extended to Feb 13. To apply and learn more, please go to:


Thursday, February 2, 2017

When CLL Goes Bad

Our Breathtaking View into Yosemite Valley this Winter

I just returned home from a long weekend in Yosemite. It was touch and go whether the roads would be clear enough to get there, but we made it and it was breathtaking!

There was 9 feet of snow where we cross country skied and most of the valley had a thick dusting of white. It was so beautiful.

A week after the 2016 ASH meeting, the CLL Society held our 2nd annual CLL Patient Educational Forum at City of Hope in Duarte, CA. After the forum, I had a chance to chat with Dr. Steve Rosen about the new data that provides hope for patients whose CLL has transformed to Richter Transformation. You can read about it and watch out interview here.

ALL DONE! Thank you to the 233 who participated in our Q4 2016 Reader Poll about your experiences with Testing before Treatment. We're really anxious to dig into the data. Thank you again for your time!

CLL Patient Support Group Meetings Coming Up AND New Ones Forming

Wednesday, February 1st from 4:00 - 5:00 PM in La Jolla, CA:
The UCSD CLL Education and Support Group will be meeting.

Thursday, February 2nd at 7:00 PM in New City, NY:

The CLL Information & Support Group of Rockland County NY, sponsored by LLS will be meeting. More information here.

Monday, February 6th at 6:00 PM in Indianapolis, IN:

The CLL and Indolent Blood Cancers Support Group will be meeting.

Tuesday, February 7th at 7:00 PM in Tucker, GA:
The Tucker - Family Support Group, sponsored by LLS will be meeting.


We are actively forming CLL-specific support group in a number of cities around the country. To see if your city is one of them, go to our home page  and click on the interest survey for your city. Not listed, but interested in starting one? Email us at support@cllsociety.orgThanks!

Upcoming Patient Education Meetings
  • Saturday, February 4th from 8 AM to 12:30 PM in San Francisco, CAThe Leukemia and Lymphoma Society is hosting their
    Northern California Blood Cancer Conference 2017 at the Hyatt Regency San Francisco. Dr. John Pagel from the Swedish Cancer Institute and a member of our Medical Advisory Board will be speaking at the CLL Breakout Session. 
  • Saturday, February 18th from 7:30 AM to 2:45 PM in Scottsdale, AZ: The Lymphoma Research Foundation will be hosting Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options which will include disease-specific breakout sessions. There is no cost to attend, but registration is required. Find out more information here.
  • Saturday, March 4th from 9 AM to 3 PM in Anaheim, CA: The Leukemia and Lymphoma Society is hosting their Southern California Blood Cancer Conference 2017 at the Anaheim Marriott. Dr. Herbert Eradat from the UCLA Lymphoma Program will be speaking at the CLL Breakout Session. Find out more information here.
  • Saturday, March 18th from 7:30 AM to 3:15 PM in Washington DC: The Lymphoma Research Foundation will be hosting Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options which will include disease-specific breakout sessions. There is no cost to attend, but registration is required. Find out more information here.
In the meantime....

Stay strong.

We are all in this together.

Brian Koffman, MD

January 31, 2017



Tuesday, January 24, 2017

More good news about my CLL (chronic Lymphocytic leukemia)

Let me set this up.

My  particular flavor of CLL has a complex karyotype and a deletion of the short arm of the 17th chromosome. And a clonal Notch1 mutation- This is all bad.

What that means is that my CLL is unstable and has a tendency to mutate. These mutations can lead to more aggressive clones of CLL that are resistant to therapy, or in worse cases transform into nastier blood cancers.

That last process is called Richter's Transformation.

I have now been on ibrutinib for over four years and 8 months.

Most Richter's Transformation happens in the first two years of treatment so I am well past the high risk period for that life threatening development. For that I am deeply grateful.

I do have a recognized mutation that does confer resistance to ibrutinib in PLCƔ2. This mutation can turn back on the signaling blocked by ibrutinib, essentially rendering the drug impotent. 

My small subclone of CLL that has the PLCƔ2 mutation has been slowly growing for about two years now. That is until my last blood test that showed it had stabilized over the last 84 days, and had in fact dipped a tiny amount.

For that I am also grateful.

This is quite unusual as the usual pattern is a relentless climb in the number of resistant cells.

Why it happened and what I can do to keep it going down is a mystery. I would like to think it is because I have been exercising more, but that is a wild conjecture. But after I finish this post, I will work-out, just in case.

I know this might be just a pleasant respite on the road to relapse, but I'll take this sweet repose. And wish for more

For those whose CLL is more tame, the news is nearly always good, but most folks with my nasty mix of genetic freakiness have already progressed a long time ago.

While I was at the 2016 ASH meeting in San Diego last month, I had the opportunity to sit down with Dr. George Follows to talk about real world data on 300+ CLL patients being treated with ibrutinib compared to clinical trial data. You can view our interview here on the CLL Society website.

This is important as too often the data is much better in the clinical trials than in the community, but for ibrutinib, this does not appear to be the case. And for those without bad markers, the results are very encouraging. 

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Friday, December 30, 2016

Good News on my CLL (chronic lymphocytic leukemia) to close out the year

More good news as the year draws to a close. 

I recently received my flow cytometry tests from Dr. Byrd done at Ohio State earlier in the month. I already knew that my absolute lymphocyte count (ALC) had dipped a little which is good news, but it is really the actually count of the cancer cells that matters when our numbers are normal as in my case. If they are high, then it is simple, most of the ALC will be made up by the malignant CLL cells.

When the numbers are low or normal (which is a good thing), only an expensive flow cytometry test that fingerprints the surface markers of my lymphocytes will reveal the details of the cancer's growth or retreat.

My clone of cancerous B cells that had been climbing at a very slow rate for about 3 years, but had recently sped up and tripled in the 90 days prior to the testing done 3 months ago at my prior visit to Columbus on Sept. 26, 2016, has now dropped a bit in the last 90 days. 

This is only the second time in the last three year that the growth of my cancer has taken a break or preferably a brake, and I am sure happy about that. It is the best possible news for the end of the year.

I am still waiting on more details and more testing, but this is reason enough to celebrate. 

I will likely do that by spending new year's eve at the Rinzai-ji Zen Center where instead of bubbly I will mediating and drinking tea. 

In silence.

Meditation is a much higher high, though I do admit the occasional flute of good champagne is pretty special.

Happy New Year to All

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