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 http://cllsociety.org/contact-us/

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 http://cllsociety.org/newsletter-sign-up/


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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Monday, June 29, 2015

The Trend is Our Friend: Living with Uncertainty with my CLL (chronic lymphocytic leukemia)

My lab test have shown a blip.

After a gradual but steady improvement in my tumor burden visit after visit at Ohio State University (OSU) during my last three years on ibrutinib (when I started it was then called PCI-32765), on my last visit my ALC (absolute lymphocyte count) rose the tiniest amount to about 2, but I didn't worry as it still was well within normal limits. It was just an unusual result for me. It hadn't been over 1.4 in a couple of years, now it was >2.

The rest of the CBC and the chemistry panel was all normal.

The next day back in California I was due for my IVIG and my repeat ALC was back down to around  1 again so I didn't think much of it. 

The fancy flow cytometry that checks for the small population of my clonal B cells, my CLL cells, is the test that really counts. That measures how many cancer cells that I still have and every test had shown fewer than the last. Both Dr. Byrd and I had predicted that already small number would continue to fall, but I would not yet be MRD negative.

What hubris!

When those results were not forthcoming in the weeks following my visit, I calmed my catastrophic flights of imaginations with reminders that when counts are too low, sometimes it hard to get an accurate result.

Then I got the news that I had a "small number of B cells" on the flow, within the expected variation seen from test to test. 

That is "doctor talk" for the fact that my count had bumped up a little, but the number was still within the expected margins of error of the test, or not significant different than the prior result. 

I still haven't seen my flow report nor do I know my absolute number. I will need to know that number at some point, but knowing it would make absolutely no difference today in what I do now, so I will try to be patient (not my best trait).

What I do know is that if the count had gone down, even just a little "within the expected margins of error" I would have been told and cheered on.

As we know that the only major group where we have seen a higher rate of relapse of their CLL on ibrutinib are previously treated patients with deletion 17p such as myself. They are the only group where < 1/2 are still progression free after less than 2 1/2 years. I have enjoyed being part of the happy minority on the Kaplan Meyer graphs.

But is this my personal start of a bad trend, the first stirrings of a tiny resistant clone that will only grow over time to become dominant? Is this the beginning of the end of my super duper run with ibrutinib?

Honestly I doubt it. 

Here's why I am honestly not worried.

A week later I received the wonderful news that my BTK and PLCG2 mutation test was negative and since nearly all CLL resistance to ibrutinib is related to a growing clone with either the BTK and PLCG2 mutation that prevents the ibrutinib from blocking signaling, odds are excellent that my lab result is nothing but a meaningless blip. Richter's Transformation (RT), the other common and more sinister cause of relapse on ibrutinib, tends to occur early in treatment and three years out is not early.  I don't have RT. No signs or symptoms.

So although I won't rest completely easy until I see my next flow cytometry results sometime after my next OSU clinic visit in August, odds are really with me on this one.

The trend is our friend, and as I have coached so many others, I now must heed my own advice: One lab test means nothing.

I will be traveling for a couple of weeks in Poland on a Jewish Heritage trip with my rabbi. One purpose of the trip is to forget all about CLL and our nonprofit CLL Society for a few days, but I will be busy in the evenings in Eastern Europe writing for the CLL Society website (some great stuff from the CLL Research Consortium or CRC Patient Empowerment and Education Meeting and from EHA coming soon) and more critically, for a peer reviewed medical journal on CLL due the beginning of August. 

I am alright with that crazy balancing act though I do worry what I will eat in Poland, not exactly a vegan's paradise.

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Wednesday, June 24, 2015



This week’s CLL update on the http://cllsociety.org is the first part of my interview with Professor Hallek on possible drug combinations using new and old therapies in the hope of being able to offer long term disease control (he won’t use the world cure quite yet) with relatively short term therapies.

Professor Hallek heads up the important and innovative German CLL Study Group that has made enormous contributions to our understanding of how to best treat our CLL, so I listen carefully to all he has to say.

He has realistic concerns about prospect of lifelong therapies and points out some of the unpleasant truths about the limitations of treatments with signal blockers such as ibrutinib or idelalisib.

But he says some ideas of what to do about those issues.

To read my commentary and review and hear the interview, please click her in the past conference section of our website.

Stay strong.

We are all in this together.


Later this week I need to  discuss some personal health issues here.

Wednesday, June 17, 2015

Biologic and Immune Therapies for CLL (chronic lymphocytic leukemia)

Hi Friends,

This week’s update on the CLL Society website http://cllsociety.org is my unscripted recordings on biologic or immunotherapies.

I start by reviewing my take on the good and bad of the well known and novel antibodies directed against our B cells by targeting its surface marker CD20. These include rituximab (Rituxan), ofatuzumab (Arzerra), and obinituzumab (Gazyva). Among other topics,  I discuss the difference between type I and type II monoclonal antibodies.

I also cover other antibodies, new and old, IMIDS (immune modulating drugs) such as lenalidomide (Revlimid) vaccines, and more.

To listen please, visit the treatment section (found under the Basics tab) of the CLL website by clicking here: http://cllsociety.org/cll-101/treatment/

Please let us know if this helps. I am particularly proud of this recording as it was done live and spontaneously with no notes. I think is ends up being more focused, ironically similar to the drugs discussed.

We plan on bringing more of this type of content. Your feedback on the website or to me by email informs what we add and how we will grow the website. Although there is only myself, my wife (both unpaid) and a wonderful RN, Betsy Dennison as the team, we listen carefully to all comments to help brings what’s needed to best manage our cancer. 

Smart patients get smart care™.

As always, all our content is free and easily accessible to anyone but if you want you may sign up for our weekly alerts to know when we post new content, 1 to 3 x a week, and for our inaugural newsletters which will be amazing. We understand the importance of privacy and don’t share any personal info.

Our website traffic has grown phenomenally in its first 10 weeks. Over a 1000 page views on our busy days. We also hope it will be a launching site for anyone with CLL as we have links to nearly all the quality sites on our front page.

The artwork in the background of the video is again my son, Will Koffman’s tribute to Durer’s Four Horsemen of the Apocalypse.  Will rendered the entire work using only bleach on black cotton.

Nothing much new to report on the personal level with my CLL. Still get tired. Still traveling way too much (over the next 2 weeks I will be in Dallas, Seattle, Las Vegas and Poland to teach and to learn) and still doing too much and getting too sleep. Really it is a bit crazy.

I am waiting on my more granular lab results from OSU. Despite my best intentions, I always worry when I am waiting for my results.


Stay strong.

We are all in this together.


Volunteer Medical Director, CLL Society Inc.


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Thursday, June 11, 2015

This Week in CLL: (chronic lymphocytic leukemia) Chemotherapy, News of the Helios Trial, New Drug Approvals and the High Cost of Cancer Medications

The annual humongous meeting of ASCO (American Society of Clinical Oncology) 2015 in Chicago did offer those of us with CLL ( chronic lymphocytic leukemia) a few interesting abstracts and one excellent education session, but this week we wanted to share some news unrelated to ASCO on our website.

This week on the CLL Society website we are posting news and educational material that relates in one way or another to chemotherapy, alone, in combos, and in trials.

We are adding another of my treatment monologues. This time I discuss what really is chemotherapy and how does it fit into the rapidly changing treatment paradigms for CLL. Spoiler alert: The key point here is that everything is changing, very fast. You can find that link here in the treatment section of the CLL Society website.

This is a good basic primer on what chemo is and isn't. The feedback from the earlier readers has been most gratifying. Please let me know what you think.

Just to emphasize the point of change coming, on June 4, 2015 the results of the final analysis of the Phase III RESONATE-2 were released comparing ibrutinib to chlorambucil in over-65 treatment-naïve patients, excluding those patients with deletion 17p. The big news is not that ibrutinib met its primary endpoint of better progression free survival (PFS) and secondary endpoints of better overall survival (OS) and overall response rate (ORR) as we might have predicted that based on the significant difference in the usual historical efficacy of the two drugs tested in prior trials. What is important about this Phase III trial for patients is that it is an important step towards getting FDA approval of ibrutinib as frontline therapy for those of us over 65.  The official press release can be found here and my commentary will be up on the CLL Society website on Wednesday, June 10, 2015 in the news section.

Finally, we share the good news that Quebec, home to my alma mater, McGill University, and often the leader in new therapies in Canada, is the first province to approve the use of obinituzumab (O) or Gazyva in combination with that same chlorambucil (C). On June 2, 2015, there was similar approval for patients in England and Wales. These two approvals on both sides of the Atlantic were based on the trial reported in NEJM in 2014 that demonstrated the superiority of the C-O over C-R (rituximab) or C alone in frailer patients with co-morbidities. That story and links to the original research can be found in the news section on Friday, June 12, 2015.

In our ongoing emphasis to consider clinical trials when making treatment decisions, we fielded another survey to explore search functions that CLL patients would want available in a CLL-specific Clinical Trials Search Engine. We're thankful to those patients and caregivers that took the time to complete the survey at the CLL Society booth during the CLL Patient Education and Empowerment Meeting prior to the CLL Clinical Research Consortium held in San Diego, CA from April 22-23, 2015. You can view those results in the Survey Results and Clinical Trials sections of the website on Friday, also.

One last thing: If you want to share your experience about how the high cost of our cancer meds impacts your care in a way that might make a difference, please contact me to discuss how we can get the word out.

On a personal note, I am still waiting for my final lab results form OSU, so I have nothing new to share.

I don't think I can keep up the pace of 4 new posts a week, but we will try to bring you the latest news and fill in the missing gaps as best and as fast as we can.


Stay strong

We are all in this together.

Brian Koffman
Volunteer Medical Director of the CLL Society
E- cancer advocate
Husband, father and grandfather

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