ASH 2013 Video WIth Andrew Schorr

This was a video we did at ASH in December prior to the approval of ibrutinib.  At the time, we didn't know the terminology the FDA would use to describe its "approval."

The main topic of discussion in this video is primarily how a patient goes about choosing a therapy in CLL.  In many cases patients will feel comfortable with a physician recommendation, in other cases they may want to educate themselves about all their options and make their own choice.

In the midst of new treatments like ibrutinib, idelalisib, ABT-199, Gazyva etc. that can be bewildering. Not sure if this video helps sort it out or not, but it is short and hopefully worth your time

IWCLL videos - thanks Brian

Brian Koffman does a great job compiling video interviews of CLL physicians.  We sat down for a marathon session in Cologne Germany not too long ago and he produced seven different videos from our time together. 

He does a great job giving a text of the contents of the video so it is probably better for me to link directly to his page rather than just reposting the videos. 

Part 1: New Prognostic Markers

Part 2: Another on New Prognostic Markers

Part 3: High risk CLL

Part 4: Feeling run down from CLL

Part 5: Options for patients who need treatment "NOW"

Part 6: Minimal Residual Disease and 17P

Part 7: Richters Transformation

Video update from IWCLL

I had the chance to meet up with Andrew Schorr in Germany at the IWCLL meeting. We taped this interview to provide an overview of where the new CLL drugs may best fit into an individuals treatment plan.  Hopefully it is a good summary for you and puts things into a more focused perspective.

Andrew does a great job collecting the voices of many experts and putting them into one place. If you haven't made a contribution to his efforts, you might want to think about doing so. We are lucky to have him out on the front lines.

I apologize for being a little long winded in response to his questions.  So much exciting stuff to talk about, I had a hard time containing myself.




                         

ASCO update 2013

Andrew Schorr and Brian Koffman have done a fantastic job putting together videos to help educate CLL patients about the state of the art in CLL.  I appreciate the opportunity to interview with them - they are a great team and a fantastic resource for CLL patients looking for good information about what is out there.

In this interview we talked about a number of new investigational medications that many CLL patients have heard of including ibrutinib, idelalisib, obinituzumab, and ABT-199.  Hopefully this gives some new insight into the importance of research participation.

Engineered T Cells

Engineered T cells are an exciting new development for patients with B cell cancers.  This will take a while to become "prime time."  Once some huge logistic details are worked out - this could potentially apply to most types of lymphoma and CLL.

The science is early but encouraging.  I've written an analysis of the technology previously (how it works / dangers / etc) but came upon this video at a Lymphoma and Leukemia Society volunteers event.

If this doesn't get you excited and bring a tear to your eye at the same time - check your pulse.    I've watched it four times and welled up with a tear every time.  It is less than four minutes - I highly encourage you to watch it!



Fire With Fire | Ross Kauffman from Focus Forward Films on Vimeo.

Ibrutinib Resistance

ASCO abstracts are out.  It feels like Christmas Morning and I am 5 years old (that is probably a very sad commentary about myself).

I'm part way through the CLL stack and Abstract 7041 jumps out at me as a MAJOR discovery:

They took CLL cases treated with ibrutinib and sequenced the entire exome in patients who became resistant (an exome sequence is not as comprehensive as a genome but it is still pretty dang impressive).

In resistant cases, they found that the binding site for ibrutinib on BTK had been mutated in two cases and in a third case, an enzyme downstream of BTK acquired a mutation that turned the protein on.

This is big because it can tell us why patients become resistant to the drug.  It is always a good sign that you have hit a very important target when the mechanisms of resistance show how important the pathway actually is.  In other words, you know the BCR is important because the CLL cells that become resistant have discovered a way to reactivate the BCR.  The next step is figuring out  how to get those patients to be sensitive again (perhaps using idelalisib?)

The other significant finding of the paper is that ibrutinib does not result in a bunch of new genetic changes in the same way FCR might.

Patient Power: "What is Hot in CLL"

I had the pleasure of meeting Andrew Schorr at ASH this past December.  Andrew is a CLL patient who has an absolutely fantastic website called patientpower.  I highly encourage you look through his material.

He asked me, "What is hot in CLL?"  There is a lot going on in CLL.  Here is the interview (I will try to directly embed this on my blog once I figure out how)

An Expert's Perspective: Why New CLL Treatments Supersede FCR from Patient Power® on Vimeo.