ASCO 2013: Dr. Wierda on Prognostic Factors in CLL (Chronic Lymphocytic Leukemia)

The whole arena of prognostic factors in CLL is constantly evolving, but a few principles have remained constant over the years.

1: Most, if not nearly all the data is retrospective.

2: Dr. Wierda and many others are refining algorithms that will weight the many variables to better predict our future including such helpful information as the expected time to first treatment or our chances of a durable remission or ultimately our chances to live long and prosper.

3: The markers predict for groups, not individuals, but that doesn't mean we should be therapeutic nihilist and ignore what our FISH tests tell us about what options improve our odds.

4: Bad prognostics are not in themselves an indication for treatment (outside a clinical trial).

5: Good prognostics doesn't always mean that our CLL will be a non-event.

6: New prognostic factors are being discovered all the time, but few will be of much clinical import.

Here is the second part of my interview with Dr. Wierda from ASCO 2013.

I will let him fill in the details on all these topics and other aspects of this moving target.

Again my thanks to  my friends at Patient Power for sharing the work and supporting the effort to get the important news about CLL from ASCO out and available to all those of us who need it to inform our choices about how we handle our disease. Check in on their website on a regular basis as Andrew Schorr is frequently update his informative site.



In fairness, I must add that other researchers have published data supporting a possible relationship between Notch1 and Richter's Transformation (or Syndrome),

I quote from a letter in the British Journal of Haematology, 2012, 158, 415–429


"NOTCH1 mutations were associated with a ~5·8-fold increase in the crude hazard of transformation into a clonally related RS (Richter's Syndrome) "

This is from an editorial from haematologica | 2012; 97(3)

"In fact, the first studies reported a high frequency of NOTCH1 mutations in .... disease progression towards transformation into Richter’s syndrome."

Now this is not the same level of evidence as in a full article, and as such might not pass mustard for Dr. Wierda and others as proof positive of the correlation, but it convinced me that it is worthy of further study.

There is just too much data out there for anyone of us to be aware of it all.

And that's OK.

ASCO 2013: Dr. Wierda Discusses Immune Therapies in CLL

In this first of several interviews from ASCO 2013, Dr. Bill Wierda of MDACC discusses immunity in general (or lack there of) in CLL and how that relates to the coming immune therapies.

He starts by explaining the basic difference between passive and active immune therapies.

His candid review of the trials so far points out the recurrent disappointments in the attempts to develop active immune therapies.

The story with passive immunity has had more success.

Monoclonal antibodies (mAb) such as rituximab or alemtuzumab were the pioneers of targeted immune therapy and have in many cases improved outcomes when added to chemotherapy without significantly increasing toxicity. Newer mAbs hold the promise of even deeper responses with few of the downsides of traditional chemotherapy and may even prove to work well without the addition of cytotoxic chemotherapy. Already useful examples include Rituximab and Revlimid or lenalidomide (R2) and the combo of HDMP (high dose methylprednisilone) + Ofatumumab. Powerful therapies with no chemo.

GA101 or obinutuzumab, a third generation anti CD20 mAB had received breakthrough status at the FDA and may be approved before the end of the year. The early data suggest this is both a potent and well tolerated treatment, hence the rush to get it to the clinic.

Passive immunity also includes the exciting CAR-T therapies that Dr. Wierda discusses. These are still in very early trials, but a few cases such as those out of U. Penn have seen spectacular saves when patients had all but ran out of all conventional options.

Immune modulating drugs (IMIDS) such as lenalidomide are in the early days of studies to figure out how they fit into the therapeutic landscape, but are clearly active in CLL and may improve some aspects of our impaired immunity,

This segues to another topic that gets Dr. Wierda really excited.

He tells of his research into ways to improve our immunity, to reconstitute our lost ability to fight off infections and to search and destroy the earliest microscopic cancers before they can grab hold and cause problems. Infections and secondary cancers are what kill those of us with CLL, and Dr. Wierda is fighting for ways not only to knock out our blood malignancy, but to also prevent us from dying not from our cancer itself, but from the damage the CLL (and its treatment) have already done to our ability to protect ourselves from infections and secondary malignancies.

This interview is from ASCO 2013 in June in Chicago.

It was great fun working with Andrew Schorr and the dedicated team from Patient Power in doing these interviews. I am grateful for their efforts and support and the willingness of the doctors to share their work at such a busy conference.

Look for more CLL interviews here over the next few weeks and keep checking Patient Power for other interviews that Andrew and I did on other cutting edge treatments for different cancers at ASCO in Chicago. Many of these have direct implications for how CLL may be treated in the future.

Here is Dr. Wierda:


Tomorrow it will be a full six weeks since my last IVIG infusion and blood draw. This is the longest I have gone without IVIG in the last six years and the longest I have gone without lab test since my first year with CLL.

I will report from the infusion center tomorrow.

ASH 2012: Dr. Adrian Wiestner: Final Thoughts

The thoughtful Dr. Wiestner of the NIH has some provocative things to say in this brief 2 minute wrap up of our interview.

He says that there may be a significant role for chemotherapy in the future for some carefully selected CLL patients.

He reminds us that these new drugs should force us to re-examine our bedrock views about cancer cocktails. They should force us to revisit all our traditional approaches.

That is a hard thing to do, but a good thing. Doctors are by nature conservative and slow to change.

But there is a sea change coming and Dr. Wiestner suggests that this is a time to really consider what  old baggage can be tossed and what we might need on this voyage.

IMPORTANT: Dr. Wiestner's trial at the NHLBI still has openings for treatment naive 17p del patients. Check out http://www.clinicaltrials.gov/ct2/show/NCT01500733?term=CLL+17p+Ibrutinib&recr=Recruiting&rank=2 . This is a great opportunity at the NIH for those who qualify and I understand a number of fellow Canadians have already enrolled.

Soon I will share his updated data on this research.

Right now, here is the second part of the ASH 2012 interview:



I still have a few surprises from ASH 2012, before I start posting from ASCO 2013 later this month.

I am happy to share that my good friend and fellow CLL survivor and patient advocate, Andrew Schorr of Patient Power and I will be combining forces to offer up several interviews on CLL and other blood and solid cancer from ASCO in Chicago.

I am looking forward to working with Andrew and his professional and pro-patient team.

I have so much I want to share here: more on non-chemo approaches, important discussions on the place of cross-overs in clinical trials, new data from the AACR meeting, what we can learn from the death and autopsy of those who didn't make it, new trials starting up and old trials closing down.

So much to share.

On a personal note, May 7th marked my one year anniversary of my taking ibrutinib. I still remember my disbelief that my nodes seemed to be shrinking in those first few days, but they were. And still are. a year later, albeit, in a less dramatic fashion.

So much has happened in this last year. My mission here and elsewhere is push that we patients can get the best possible care, and that involves more research, great doctors, and wise and brave patients.

We have all those and we sure have moved the bar forward in the last year!

ASH 2012: Interview with Web Savvy Patient, Andrew Schorr

Andrew Schorr is a journalist, an advocate, and a very web savvy patient who has stared down CLL for about 16 years and it now winning his fight with myelofibrosis.

Through his helpful website, patientpower.info, he has provided a treasure trove of information for patients looking for answers.

Now he gets to be on the other side of the microphone in the hall outside the press rooms at ASH 2012. We learn from the interviewer turned interviewee about his strategies to navigate his disease. He outlines through his personal story and his decision process, the critical need for getting support from others with the disease, the primacy of expert advice, and the important role of clinical trials in saving his life.

In future posts, we will both share the interview he did of me about my ibrutinib trial.

Andrew and I have moved in the same CLL circles for several years now and I hope we keep doing it for many more to come.

Here is the interview:

Below is a photo of some of my local support group and our significant others at our holiday get-together. We don't look too bad for a bunch of patients with an incurable cancer, do we?

I would be lost without them.  If you have CLL, and don't have  support group, get one or join ours if you are local.

LIVE FROM ASH 2012

Let me use this post just to set the scene. I will bear news soon, all of it good, some of it incredible.

There is so much happening at ASH, often at the same time. There are several incidences when I have highlighted three different important presentations related to CLL for the same 15 minute slot that I would love to attend. That's not going to happen.

Add to this is that the conference center is so huge that it can take 20 minutes or longer to walk from one  lecture hall to another. I actually walk much more inside the building than the pleasant 15 minute walk through centennial park to the center from the hotel.

Add to that some 15,000 attendees, all of whom are in the halls between sessions with the proficient and helpful staff directing the heavy to and fro foot traffic through the long corridors and onto the narrow escalators.

So far one and a half days into it, I have interviewed Drs. Pagel, Kipps, and Steensma. Andrew Schorr interviewed me and I returned the favor, asking him about his coping with a secondary cancer. I have video from the press conference on ibrutinib given by Dr. Byrd.

So much more yet to happen.

Without my professional videographer, my oldest son, Ben, it would be impossible to pull this off.

The logistics are tricky. At the Georgia World Congress Center, we are constantly rejiggering the schedule, lining up the hematologists ( think herding cats), procuring the much in demand interview rooms, setting and resetting up redundant recording systems, doing the sound and video checks, and finally making sure the actual interviews runs on time. Rushing back to the hotel, Ben is recharging batteries, downloading the video cards, running our backups, and doing all the trouble shooting.

In between I am attending lectures and trying to find something vegan to eat.

The first sessions start at 7:30 AM and the last can finish at 8AM.

It makes for a long, busy but incredibly rewarding day.

I am so lucky to be here, to have my son's help and to have access to the generosity and wisdom of so many doctors.

Andrew Schorr interviewing me at ASH 2011

My friend and fellow CLLer, the Seattle based journalist Andrew Schorr does a great service to CLL patients in particular and many others with chronic illnesses in general with his helpful interviews with the major researchers, often at the big medical society meeting. Here he takes a break from the "usual suspects" and interviewed me at ASH. (The American Society of Hematology) , 2011.

Check out his wide ranging website full of real dialogue with doctors and patients at http://www.patientpower.info/ to learn more. I am sure you will.