Saturday, June 24, 2017

Ibrutinib failure as a result of progressive chronic lymphocytic leukemia (CLL) or Richter's Transformation.

This week I'm posting another interview that took place at ASH 2016 with Dr. Adrian Wiestner from the NIH where we discussed ibrutinib failure as a result of progressive CLL or Richter's Transformation. You can view my summary, and watch the interview here: http://cllsociety.org/2017/06/ibrutinib-failure-prog-cll-rt/ 

We have posted interviews and articles about research that is being conducted to study treatment options for patients with relapsed or refractory CLL. On occasion we will make our readers of a clinical trial that is starting that might be of interest. Today we have posted some information about a trial for patients with relapsed refractory CLL who have received 2 or more prior treatments, including treatment with a BTK inhibitor such as ibrutinib or acalabrutinib. You can read more about it here: http://cllsociety.org/2017/06/new-clinical-trial-rr-cll/

Stay strong

We are all in this together

Brian

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Tuesday, June 20, 2017

Monoclonal B-Cell Lymphocytosis: A precursor to CLL (chronic lymphocytic leukemia)

This week I'm posting  on the CLL Society website an interview that took place at ASH 2016 with Dr. Neil Kay from the Mayo Clinic in Rochester, MN where we discussed monoclonal B-cell lymphocytosis or MBL, which is felt to be a precursor to CLL. You can view my summary, and watch the interview here: http://cllsociety.org/2017/06/mbl-precursor-cll/

We have posted interviews and articles about research that is being conducted to study treatment options for patients with relapsed or refractory CLL. On occasion we will make our readers of a clinical trial that is starting that might be of interest. Today we have posted some information about a trial for patients with relapsed refractory CLL who have received 2 or more prior treatments, including treatment with a BTK inhibitor such as ibrutinib or acalabrutinib. You can read more about it here: http://cllsociety.org/2017/06/new-clinical-trial-rr-cll/

Our big quarterly newsletter is next week.

So much to share. So little time.

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Friday, June 9, 2017

ASH 2016: Dr. Seymour on combination therapies for chronic lymphocytic leukemia (CLL)

Combination therapies are the future in CLL. And combinations that include venetoclax are being actively researched.
For good reasons. Venetoclax is a potent drug and a potential closer, wiping the blood and marrow clean of CLL.  Or at least to a level so low that the cancerous clone can't be found.
This week I'm posting on the CLL Society website an interview with Dr. John Seymour from the Peter MacCallum Cancer Centre in Melbourne, Australia when we talked at ASH 2016 about combination therapy with venetoclax. You can view my summary, watch the interview or read the transcript at http://cllsociety.org/20…/…/ash-2016-venetoclax-combination/.
For those of you who didn't catch this last week, check out the new 2 minute video I posted about helping to fulfill the mission of the CLL Society. You can view it at http://cllsociety.org/donate-to-cll-society/. We are so thankful to those of you who provided feedback and support us.
Stay strong
Brian
PS: I will be posting a personal update here very soon.

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Saturday, June 3, 2017

ASH 2016: Dr. Anthony Mato on Real world Data on CLL (chronic lymphocytic leukemia)

I've posted on CLLSociety.org an interview with Dr. Anthony Mato from U. Penn when we talked at ASH 2016 about the real-world research he has been doing patients being treated with ibrutinib both in the community and academic settings, and not just within clinical trials. 

You can view my summary, watch the interview or read the transcript here.

Real world data is an important and challenging growing area of research, not just in CLL bit across many diseases

Here is a link to an interview with former FDA commissioner Robert Califf, MD discussing the pros and cons of real world data and best practices for research.

I am very fortunate to be working with Dr. Mato on our CLL patient journey research survey.

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Thursday, June 1, 2017

More on Genetic Testing in CLL in A Facebook Live Event at 1 PM June 1

A genetic testing Facebook Live event this Thursday from ASCO with Dr. Jeffrey Jones similar to the one I did at iwCLL. 
Dr. Jones from Ohio State University (OSU )is a great educator.
The link to the OSUCCC Facebook page where the event will take place is here: https://www.facebook.com/OSUCCCJames/
Event Details:

Dr. Jeffrey Jones will discuss genetic testing in CLL from the Ohio State University Comprehensive Cancer Center (OSUCCC) Facebook page live from the ASCO meeting.

Thursday, June 1

2:30 PM CT

Monday, May 29, 2017

We Need Your Help

Friends and Supporters,

We need your help.

The nonprofit CLL Society has prepared a two-minute video that outlines our needs and asks for your donation to allow us to continue and expand our work.
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Please take a look at http://cllsociety.org/donate-to-cll-society/ and help us however you can.

Thanks for your consideration.

Stay strong

We are all in this together.

Brian

Brian Koffman MDCM DCFP, DABFM, MS Ed


Founder and Medical Director, CLL Society Inc.

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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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