Friday, August 28, 2015

ASH 2014: Dr. Jeff Sharman Discusses the Biology of the CLL (chronic lymphocytic leukemia) Cells

I am posting here the video and comments that can also be found on the CLL Society website.
In the first of a two-part interview recorded at the 2014 American Society of Hematology annual meeting with Dr. Jeff Sharman, an important CLL researcher and helpful blogger (see, we take a step back and listen as Dr. Sharman explains how our increased understanding of the biology and lifecycle of the CLL cell has resulted in the breakthrough therapies we are enjoying today.
Take Away Points:
  • Unlike some cancers, CLL is not driven by one particular activating mutation.
  • B cell receptor signaling is an important driver of CLL proliferation.
  • The behavior and biology of the CLL cells inside the lymph nodes and the bone marrow is very different than that of the same cells in the blood stream.
  • CLL cells grow in the nodes and the bone marrow, not the blood stream.
  • The differences between the biology of the cells in and out of the blood stream have profound implications for therapy.
  • About 1% of our CLL cells are born and die each day.
Dr. Sharman is a good educator and takes the time to carefully explain what is happening in the lifecycle of our cancer cells.
My more colorful and simplistic analogy comes at the end of the presentation.
Here is the video:
Brian Koffman

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Sunday, August 23, 2015

Good News: Personal Update on my CLL (chronic lymphocytic leukemia)

Sorry for my rare posting here. 

The CLL Society has kept me way too busy, but I am trying to reestablish a balance between my posts here and there. Watch for interviews from ASH 2014 and more personal material here very soon.

My lab results tends to come in bunches- at St. Jude's, OSU and UCSD all in about a week due to a quirk in scheduling.

And all the bunches have all been good.

I am now over 37 months on ibrutinib and most of us trial guinea pigs who have done well this long, continue to do well.

There are exceptions and late resistance can develop, but it is still quite rare.

So here's the good news.

My lymphocytes flute a bit but remain just a bit above 1.  That is great.

My Hgb is hovering in the low rage of normal, so no anemia again. It's been months since I have had anemia, so maybe that diagnosis is part of my past and not my future.

My platelets are a bit high consistent with my prior splenectomy and my very dormant nearly forgotten ITP still being well behaved. I have grown blasé about happy healthy platelet numbers. No more fear and trembling waiting for my blood counts.

When we look more deeply at my blood, using the flow cytometry we find that exactly 1.0% of my lymphocytes are monoclonal B cells or CLL cells.  This is up from 0.8% 6 months earlier and down form 1.4%  three months before that.

What that suggests is that my disease is stable. Statistically identical over the last 9 months.

I wish it was continuing to trend down slowly, but it probably isn't. But is not rising either.

So what does that mean?

Could this be the long bottom of a big bowl shaped curve that will start up again at some time?

Possibly, but since I lacked the common mutations (at least when tested 3 months ago) that lead to ibrutinib resistance that is unlikely. To rest easy, I want see this month's test for mutations in BTK-PLCG2 , but I am anticipating no clouds on the horizon.

Will I be one of those who has a long long time with a low low level of disease? I can live with that is the long is several decades and the low stays where it is.

My LDH was a touch high on one sample, but OK in another, so that's the one I believe. No reason for a high LDH, so I dismiss the out of normal one.

The rest of my blood chemistries remain boring and healthy. Well, my total protein was a big low again, because I make so little antibody.

No surprise that my immunoglobulins remain low except for the artificial elevation of my IGG from my infusions of IVIG every six or seven weeks. Not much leads to those rising back to normal even when our disease is well controlled. That persistent immune deficiency remains one of the biggest unmet needs of the CLL community in general and me in particular.

Got a another great piece of lab news, actually a big relief.

My PSA was low and steady after some wild bouncing around last year and giving me a short scare that I might have prostrate cancer, not unheard of in a man in his 60s, especially one with CLL. I am no longer worried with two low levels almost a year apart.

Both Drs. Kipps and Byrd found some small nodes (1 x1cm or less) in my neck and armpits, but no big change up or down for a long time now. My liver is staying small and my spleen has not  grown back after being removed in a vain attempt to control my ITP years ago.

Before my next visit to OSU in 3 months, I must get imaging of my abdomen with an MRI (I have sworn off CT scans).

Right now, it is steady as she goes.

As I said before I do wish my levels were dropping, but there is so little experience this far out with ibrutinib, it is hard to get too worked up, and I am watched closely for any changes. 

Plus there are great options out there for a post ibrutinib world, not that I am anticipating joining that small cohort any time soon.

So that's my story.

Off to iwCLL 2015 in Australia where I am speaking on panel with Drs. Keating and Roberts and others about the high cost of cancer meds. And running a small patient education meeting with Lymphoma Australia and interviewing many CLL researchers for the blog and the CLL Society website, and meeting CLL and lymphoma patients from Australia and New Zealand.  Busy times, but I so look forward to it. And I will stay to play in Melbourne and Hobart for a week after with my wife and oldest son.

Life is good.

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Thursday, August 20, 2015

3 Important Papers on CLL (chronic lymphocytic leukemia) from ASCO 2015


This week on CLL Society ( in our 2015 conference coverage ( section, we feature an interview with me by fellow CLL patient, Carol Preston of Patient Power ( where I quickly outline my take on three papers from ASCO 2015 on CLL.

ASCO is more about solid cancers, so the news on CLL tends to be scarce.

The three presentations are on a new prognostic scale, on a new non-chemo triplet therapy and finally on Bendamustine with and without ibrutinib.

In the accompanying text, I go into more detail, and of course provide a link to the source material itself so we can all form our own opinions.

Your comments are welcome. 

I am off to iwCLL 2015 in a few weeks where I will be speaking on a panel with Dr. Keating and others on how to improve access to expensive cancer medications. I also plan to meet other CLL patients and interview the experts gathered in Sydney, Australia.

Stay strong.

We are all in this together.

In the next week I will update my health status here. Spoiler alert-all is rock stable.


Thursday, August 6, 2015

CLL Biorepository for Research and Comments on Chemo from Patient advocates


This week we finally learned why they need so much blood of ours every time we are seen at a research center. We learned what a biorepository is and how it is changing how CLL research is done.

Donna Neuberg, Sc. D. from Dana Farber Cancer Institute is the director of biostatistics for the CRC (CLL Research Consortium). In an interview from the CRC research meeting on April 24 and 25 that followed the April 23 patient meeting, I asked her the burning question: What exactly do they do with the 10 extra tubes of blood they draw at every clinic appointment at a research center?

The short answer: They put them on ice!

Her more detailed response and discussion of the research made possible by this amazing resource, the CRC's CLL biorepository, is eye opening. She also talks about privacy issue and the reasons for the patients' very limited access to their own research results. This interview gives you a peek under the hood of how longitudinal research is done and why serial blood samples are so helpful.

As patients, we may never meet Dr. Neuberg but the stewardship she is providing to get the most research benefit out of our precious blood samples is moving us closer to a cure.

The link to my interview with Dr. Neuberg is

 Also new on the website this week is a thoughtful discussion here ( of the risks and benefits of chemotherapy. CLL patient Terry Evans argues convincingly not to reject BR or FCR and other chemotherapy regimens out of hand, but rather to consider their potential role dispassionately and Karl Schwartz from Patients against Lymphoma points out some of the under-recognized beneficial effects of chemotherapy on our immune system, perhaps as a form of immune priming. I have also included a link to my prior discussion of the nature of the particular chemotherapy that is used in CLL. Check out the opinions of two very knowledgeable patient advocates and share with us your opinions.

Stay strong.

We are all in this together.

Brian Koffman
Volunteer Medical Director of the CLL Society Inc.

Tuesday, July 21, 2015

Phase 1 Trials and My Advice on How to Survive and Be Your Own Best Advocate with CLL (chronic lymphocytic leukemia)


This week we have published helpful information from two patients on the CLL Society website.

The first is a thoughtful well-referenced editorial by Cynthia Havstad on the personal value of enrolling in a Phase 1 trial

Cynthia recently enrolled in a trial of a novel antibody directed against ROR1. This promising and very specific target is the culmination of decades of works by Dr. Kipps and his team at UCSD. For the background on why therapies directed against ROR1 are so exciting and details the trial, click here to watch my interview with Dr. Kipps. The link to the actual trial is found here.

To read Cynthia's helpful own story about her experience in considering a trial so early in a new drug's development and her actual experience please click here.

Without researchers such as Dr. Kipps and brave and smart patients such as Cynthia, we would not be making the amazing progress that we are in treating CLL.

The second patient we present this week is yours truly sharing my full 24 minute video from the CRC 2015 conference. My topic was pretty fundamental: Being our Own Advocate and Staying Alive with CLL (chronic lymphocytic leukemia).

It's a dense presentation.

First I briefly share my own 10-year history with CLL.

Self advocacy's risk (yes there are risks) and benefits are outlined.

Next I catalogue my advice in term of my personal three steps for mindful survival.
  2. ACT 
I tried to keep my counsel very practical and even a little fun, sharing my survival tips learned over my 10 years of struggles with an aggressive brand of CLL.

Some of these are broad overarching principles of dealing with a catastrophic illness, and some are very focused suggestions on getting the most out of a doctor's visit or a phone call with our insurance.

They include:
  • Put together your team (this is number one)
  • Become or find an expert.
  • Think laterally.
  • You always have time to make a decision, but you don't have forever.
  • Risk is impossible to eliminate.
  • You have to make decisions with imperfect and contradictory advice.
Lots more but it would be best if you can set aside 24 minutes and perhaps have a pad and paper handy.

The link to my video lecture is here


Please, please, please if you have your own survival and advocacy tips, share them with us at the CLL Society Community using

We welcome your feedback.

As always, all our content is free with no requirement to sign in, but if you want to receive alerts about what's new so you don't miss any important fresh content, please sign up at


Stay strong

We are all in this together.

Brian Koffman
Volunteer Medical Director of the CLL Society

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Tuesday, July 14, 2015

TITLE: CRC 2015: Dr. Neil Kay on Prognostic Indicators and Standard Early Care for CLL

This week’s new post on the CLL Society’s website brings us practical advice from Dr. Neil Kay out of  Mayo clinic on  prognostic indicators and how to manage early stage CLL. He also  discusses MBL or monoclonal B cell lymphocytosis a precursor to CLL.

Dr. Kay’s lecture and my commentary from the robust but accessible CLL Research Consortium (CRC) Patient Empowerment and Education Conference in April 2015 in San Diego at UCSD can be found under conference coverage here.

If you haven’t already seen Dr. Kipps’ incredible overview of CLL and the work the CRC does, please catch it here.

Brian Koffman (flying home after two weeks in Poland)

Volunteer Medical Director CLL Society

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Thursday, July 2, 2015

ESH 2014: The Future Role of FCR and new data on venetoclax and rituximab in CLL (chronic lymphocytic leukemia) and my latest lab results

I thought I sneak in one last post from LAX before I board my plane to Wroclaw, Poland via Munich.

It is mostly about the new posts on the CLL Society's website and our nonprofit's news, but I wanted to share that my latest lab results from my visit to the infusion center for IVIG remains most boring with a low normal hemoglobin, a high normal platelet count and an absolute lymphocyte count of 1.2.  YEAH! Of course that really matters is the count of clonal B cells and that takes flow cytometry, but at least I know that nothing major is happening. Slow and steady makes me happy.

This week on the CLL Society website we bring the second part of our interview with Professor Michael Hallek of Koln, Germany, the director of the German CLL Study Group and a major CLL researcher and thinker.

He starts by discussing his “fast boat” adaptive trial strategy (similar in many ways to that of Prof. Hillmen in the UK), essentially looking for the most tailored therapy based on not just predictive factors, but also on how we patients actually respond in trials. He is looking for what I call that perfect Goldilocks’ mix of “ as much as necessary, as little as possible” therapy.

In the second half of the interview, he makes a cogent argument for the ongoing use of FCR frontline in select patients. While many of us are not fans of chemo-immunotherapy (CIT), Professor Hallek has strong data to support his perspective. Listen with an open mind.

We also share my comments and background on an important oral abstract presented at the 20th Congress of the European Hematology Association (EHA), June 11-15, 2015 on venetoclax (ABT-199 or GDC-199) and rituximab. In relapsed patients, the total response rate, the complete response rate, the MRD- rate and the ability for some to be able to remain disease free after stopping the drug is important data that you can find here in our 2015 conference coverage section.

We have a significant backlog of important educational material mostly from large conferences such as ASH 2014 and others from 2015 that we plan to post over the next few months.

In a first step to speed up the process, our first high school intern volunteer, the granddaughter of the CLL Society's attorney, has joined us online to help her earn her community service hours by helping us catalog all the videos that we have produced and are storing on the web.

We are working hard to expand what we offer to the tens of thousands of online readers and to actuate our ambitious plans for patient-centric, physician-curated live education and support. One volunteer medical director (yours truly), his unpaid wife and one part-time RN can’t do it all, although I have to say we have made some amazing progress in our mission to meet the unmet needs of the CLL community in the less than 90 days since our nonprofit’s website launched. Our website is #1 in organic Google searches for CLL Society despite having no search engine optimization in place. We are too busy trying to get our content up.

There is so much more we must do. Your suggestions, help, support, donations, ideas, and feedback are what guide us and keep us going.

We remain forever committed to open content for all with no need to sign in or share any of your personal information to see a video or to get the help you need. If you haven’t done so already, we encourage you to please sign up to receive alerts regarding new postings and for our quarterly newsletters (first one will be published in September) and to share with other patients, caregivers or concerned family or anyone whose life is touched by CLL.

The CLL Society will be at iwCLL in Australia in September to cover the news and we are planning an amazing patient meeting the day before the researchers' meeting in Sydney with Lymphoma Australia. 

Stay strong.

We are all in this together.

Brian Koffman

Volunteer Medical Director, CLL Society

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