Saturday, May 20, 2017

5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State

May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica.
I still take 3 battleship grey capsules every morning to keep the CLL dragon at bay.
Much has changed in those five fateful years and I want to share some of my reflections on that amazing journey and some of my hard learned lessons.
I will be writing more about my story as a patient on these pages. You can get more of the past day by day blows over the last 9 plus years here in my blog  that in many ways was the mother to this website and the CLL Society. 
My very first blog post (http://bkoffman.blogspot.com/2008_04_01_archive.html), other than the portrait of me by my son, dates from April 29, 2008 and deals with another fateful decision, the one to have a transplant. Now with 1100 posts and 1.2 million views later, I am still telling my CLL story.
The Decision to Enter a Clinical Trial
In 2011, my CLL was not behaving. After my failed allogeneic hematopoietic stem cell (bone marrow) transplant, my nodes were growing again and became massive, over 11 cm long in the gut. My absolute lymphocyte count was also climbing, I had a mild anemia, but at least my platelets whose prior crashes from the auto-immune ITP (immune thrombocytopenia) had lead to five unpredictable and life-threatening hospital admissions were now holding steady on my immune suppressing cocktail of cyclosporine and rituximab.
I had added a small sub-clone of 17p deleted cells to my more dominant 11q deleted clone of bad actors. In fact I had developed several new mutations, more than enough to qualify as a complex karyotype. I had a very nasty flavor of CLL.
My CLL also had now clearly demonstrated genomic instability, the ability to continue to mutate and find ways around drugs meant to control it.
Chemo-immunotherapy (CIT) such as FCR (fludarabine, cyclophosphamide and rituximab) was off the table. It simply wouldn’t work due to my 17p deletion. My options were vanishingly few.
With a failed bone marrow transplant as part of my medical history, I was not only a high-risk patient, but also one excluded from most clinical trials. There is a lot of risk in clinical trials, and manufacturers want to eliminate as much as they can by excluding those who might disrupt the data such as post-transplant patients like me. This is still a common exclusion criterion.
Against this dark landscape, there was a tiny, but dazzlingly bright light. At the huge annual ASH (American Society of Hematology) meeting in San Diego December 10 – 13, 2011, there was a loud buzz about two new related therapies that were showing remarkable efficacy in very early and very small phase 1 trials in the worst of the worst CLL patients, such as yours truly.
And there was this remarkable moment of agreement between all the CLL experts, a moment never seen before or since, a consensus that we might be witnessing something special, that a new era might be dawning in CLL.
That feeling of a sea change coming turned out to be prescient.
Those two drugs were CAL 101 (now known as idelalisib or Zydelig) and PCI-32765 (now known as ibrutinib or Imbruvica).
Neither was available for me in California in a trial, but there was a trial opened in Columbus, Ohio at Ohio State University where I would likely qualify.
Clinical trial NCT01217749 (PCYC-1109-CA) would end up both changing and saving my life.
I had leveraged my position as a doctor and by this time, my modest fame as a CLL blogger, to wrangle an introduction to Dr. John Byrd in a noisy hall at the ASH conference. Within 10 minutes of talking, he had penciled me in for the clinical trial that he was running and so began our strong friendship.
I had to fight hard with my insurance company to get coverage for this out-of-state trial, but soon I had enrolled in the study and moved from sunny southern California to Columbus, Ohio for three wintery months.
I took my first three pills of PCI-32765 a little over five years ago.
In the next installment of this story, I will share more about the trial from the first days to the present, but for now I want to share a few “take- aways” from my adventure that I learned from this experience:
  • Don’t give up.
  • Think outside the box, or as Dr. Terry Hamblin would say: Think Laterally.
  • Leverage every advantage you have.
  • Be prepared to move, both physically and metaphorically, when you need to move.
  • Expect the unexpected- in this case, amazingly good results.
  • Remember to be grateful.
More to come…
Stay strong. Stay in touch.
We are all in this together.
Brian

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Thursday, May 11, 2017

More on Steroids and an Upcoming FaceBook Live this Saturday at 3:45PM EDT from iwCLL

Hi,
I just posted the third and final segment of my 3 articles on steroids in CLL. This one is on the possible short term risks and on correlation versus causation. You can find it here: http://cllsociety.org/2017/05/steroids-part-3/
I will be at the important CLL conference, iwCLL in NYC this weekend doing a Facebook Live at 3:45 EDT on May 13, so please visit the CLL Society Page https://www.facebook.com/CLLsociety/ and join in if you have questions on CLL.
Too much travel but it all for good reasons. Just back from an amazingly successful launch of CLL Ireland in Dublin where I was privileged to be one of the speakers.
Stay strong
We are all in this together
Brian

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Saturday, April 1, 2017

Two Year Anniversary of the CLLSociety.org website Celebrating with our 7th Newsletter

This issue of The CLL Tribune (http://www.cllsociety.org/newsletter/) is our 7th quarterly newsletter and I am proud to say it marks two years since the CLL Society has had a web presence. We have only grown because of your support. Thank you.
This issue includes our Basic section where I do the math on how much CLL we have in our blood. In Beyond the Basics, Dr. Pagel discusses the rapidly changing role of transplant in CLL. From ASH 2016, in Conference Coverage, Dr. Seymour discusses promising new BTK inhibitors. I hope you enjoy my Did You Know fun CLL facts and please don't skip our Ask & Tell section where you can read the results of last issue's Reader Poll or Ask the Doctor section featuring Dr. Furman. 
The Living Well with CLL section has five amazing and inspiring articles all written by patients: CLL Life Lessons by Jennifer Woolf; A Sentence of Life! By Derek Caine; Me and my Leukemia, BFFs Forever by Nancy O'Brien Simpson; n of 1 Chapter 28 by Glenn Sabin with my brief intro; and a book review of n of 1 Book by Rick Conner.
We can learn so much from each other. We are so grateful to all our contributors and for your readership and support that in two short years has made us the go-to site for patient-friendly education, support and research. And please, if you have a story to tell or a lesson to share, we need you to write for us. Reach out to us at support@CLLSociety.org. 

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Tuesday, March 28, 2017

ASH 2016: Dr. Matt Davids of the combination of TGR-1202 and ibrutinib for relapsed refractory CLL (chronic lymphocytic leukemia)

This week, on the CLL Society website we are sharing a video interview with Dr. Matthew Davids from  ASH 2016 where we discuss a clinical trial that combines two targeted therapies for treating relapsed/refractory CLL, ibrutinib and TGR-1202. You can read the summary and watch the video or read the transcript here .

TOMORROW, we'll be publishing the first 2017 issue of The CLL Tribune and marking the 2 year anniversary since our website went live! Watch for it!

Two years. WOW!
CLL Patient Support Group Meetings This Week

Monday, April 3rd at 6 PM in Indianapolis - the CLL and Indolent Blood Cancers Support Group will be meeting. More information here.

Tuesday, April 4th at 7 PM in Tucker, GA - the Tucker Family Support Group, sponsored by the Leukemia and Lymphoma Society will be meeting.  More information here.  
 
NEW CLL Patient Support Group Meetings Coming Up

Saturday, April 15th at 3 PM in Vienna, VA - 
the Washington DC-Area CLL Support Group, sponsored by the CLL Society will be meeting for the first time. More information here.

Saturday, April 22nd at 1 PM in the Boston area -
the Boston CLL Support Group, sponsored by the CLL Society will be meeting for the first time. More information here

Sunday, April 23rd at 4 PM in San Francisco - 
the San Francisco CLL Support Group, sponsored by the CLL Society will be meeting for the first time. More information here

ALSO - 
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. JUST ADDED - Rochester, NY; Milwaukee, WI; Atlanta, GA; Salt Lake City, UT; Huntsville, AL. Not listed, but interested in starting one? Email us at support@cllsociety.orgThanks!

Upcoming Patient Education Meetings
  • Saturday, April 1st from 7:30 AM to 3:00 PM in Atlanta, GA: 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. ALSO Rick Conner, a CLL patient in the Atlanta area will be manning the CLL Society table and collecting names of those who might be interested in a CLL-specific patient support group. Stop by and say Hello!
  • Thursday, April 6th from 6:00 PM to 8:30 PM in Boston, MA: The Lymphoma Research Foundation will be hosting Ask the Doctor: Updates on CLL/SLL. There is no cost to attend, but registration is required. Dinner will be provided for registered attendees. Find out more information here. 
  • Thursday, April 20th from 6:00 PM to 8:30 PM in Cherry Hill, NJ: Anthony Mato, MD, MSCE from the Abramson Cancer Center in Philadelphia will be chairing the patient educational forum, CLL in 2017: State of the Art Management from a Patient's Perspective with his team. Brian Koffman, MD from the CLL Society will also be speaking. There is no cost to attend, but registration is required. Attendance is limited and registration will be closed when attendance limits are reached. Dinner will be provided for registered attendees. Find out more information here. 
  • Monday, April 24th in Columbus, OH and streaming live: Ask the Expert: Nutrition & Chronic Lymphocytic Leukemia will be held at The James at Ohio State University. This event is free, but pre-registration is required. Visit https://nutritionandcll.eventbrite.com  to register or for more information, please call JamesCare for Life at 614-293-6428. Find out more information here
In the meantime....

Stay strong.

We are all in this together.

Brian Koffman, MD
March 28, 2017


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Wednesday, March 22, 2017

Combination Therapy in CLL

This week, I am sharing a video of Dr. Jennifer Brown from Dana Farber Cancer Institute where she discusses the possible next steps in combination treatment strategies for chronic lymphocytic leukemia (CLL). You can read my summary and watch the interview here.

This is the future. And the direction that we need to continue to research

NEXT WEEK, we'll be publishing the first 2017 issue of The CLL Tribune and marking the 2 year anniversary since our website went live! Stay tuned!

Stay strong.

We are all in this together.

Brian

http://cllsociety.org

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Saturday, March 11, 2017

Test Before Treat: The importance of genetic testing in CLL

It is critical not just to get the diagnosis of our blood cancer right which may be wrong up to 20%, but also to know the genetic make-up of our cancer. Knowing that can determine what treatment will work and which won't. Genetic testing is so important in CLL. This short TV interview with Dr. Pau Barr is surprisingly sharp and informative.

Here is a link to the interview:

http://foxrochester.com/…/closer-look-at-genetic-testing-fo…

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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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