ASH 2015: Dr. Stephan Stilgenbauer on clonal evolution in CLL (chronic lymphocytic leukemia) and update on many upcoming meetings

This week in the 2015 Conference Coverage section of the CLL Society website, we have posted an interview with Dr. Stephan Stilgenbauer as he discusses clonal evolution at the American Society of Hematology annual meeting in December 2015 in Orlando. You can see a summary and view his interview here.

Last week was very busy as I attended the CLL Research Consortium meeting from Wednesday through Friday and then took a redeye flight to Atlanta for a CLL educational meeting on Saturday. I spoke to the 30 attendees, and was thrilled that almost 90% of them already knew of the efforts we have been making with the CLL Society.

There are more meetings coming up for those of us affected by CLL:

March 12th at 7:30 AM in Scottsdale, AZ: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options will be hosted by the Lymphoma Research Foundation. You can find out more information and register here. There is no charge to attend.

March 17th at 6 PM in Chicago, IL: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here.  There is no charge to attend.

March 19th at 8 AM: The Southern California Blood Cancer Conference sponsored by the Leukemia and Lymphoma Society will be held at the Anaheim Marriott. You can find more information and register here. The CLL Society will have an exhibit table at the conference. We look forward to seeing you there. There is no charge to attend.

March 21st at 7 PM: First CLL Society Support and Education Network Patient Support and Education Meeting will be held at City of Hope: For those of you in the Los Angeles area, a new patient support and education group is forming. For more information, view the flyer. [http://www.cllsociety.org/docs/cohmarch2016.pdf] There is no charge to attend.

March 22nd at 6 PM in Atlanta, GA: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. You can find out more information and register here. There is no charge to attend.

April 2nd at 7:30 AM: The Lymphoma Workshop: Understanding Lymphoma Basics and Current Treatment Options hosted by the Lymphoma Research Foundation will be held in Manhattan Beach, California. It will be held at the Manhattan Beach Marriott from 7:30 AM to 3:30 PM. You can find out more information and register here. The CLL Society will have an exhibit table at the conference. We look forward to seeing you there. There is no charge to attend.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD
Volunteer Medical Director of the CLL Society

http://cllsociety.org
http://bkoffman.blogspot.com

LRF 2015 North American Educational Forum on Lymphoma in Brooklyn

I am on my way home from the North American Educational Forum on Lymphoma in Brooklyn, New York. Very tired, but satisfied.

Honestly I didn't go expecting  to learn much new on CLL, not that I am so aware that I think I have nothing to learn, but because this is not the forum for cutting edge news or research. It is more of a conservative recap, a  review of the state of the research and standard of care and a prediction of where the future research might be headed.

It is also mostly about lymphomas in general and less specific about CLL, though there are two good breakout CLL sessions and the general sessions are all very worthwhile.

The reason I go is to connect with old friends and meet new ones and to see what alliance the CLL Society might forge with individuals and with other patient advocacy organizations. I am also looking for the unmet needs of our community, and trying not to replicate what others are already doing well.

This is a really a meeting for patients to network and learn they are not alone. It is a great conference for newbies who are still overwhelmed with their recent diagnosis and want a helping hand and to learn they are not alone, and for those who want to learn the basics and get a glance at the future.

Expect a few brief but important audio interviews with the CLL experts and with a couple of patients to be posted soon on http://cllsociety.org.

But it is not so much much about breaking news, but about forming a community.

if you haven't already, please check out our CLL Society's first newsletter that came out earlier this week. I am so proud of all the patients' voices that contributed articles.

We are slowly but surely building a community.

Bad knees, Baker's Cysts, and Good Times with CLL (Chronic lymphocytic leukemia), plus our newsletter

I tripped walking into my medical office yesterday, scraping the front on my left knee just below the patella. I was tired, jet lagged having arrived home from Hobart, Australia less then 2 days earlier, was carrying a lot of stuff and was distracted talking on the phone with someone with CLL facing some tough choices. But I don't need any excuses. I fell because I have a bad knee. Actually two bad knees. Two very bad knees getting worse.

Happily my knees are slow to react to trauma. I was able to hobble through a busy day of patients, but by the end of the day I knew I was in trouble.

When I stress my knee (this is the second traumatic strain of my left knee in less than a month), there is no forgiveness, no flexibility, no resilience. There is only pain and swelling and loss of function.

In this case despite the anterior trauma, the back of my knee swelled up with a huge but benign Baker's cyst, a synovial swelling that restricts my ability to fully extend my joint and thus to walk without pain and a forward leaning posture reminiscent of the elderly osteoporotic women I met in my travels to Japan.

The good news is that it little hurts as long as I lie still with it raised, slightly flexed and packed in ice.

Which is what I did today. All day.

There is no definitive treatment for a Baker's cyst. The real treatment is to take care of the problem causing it, namely in my case, the end stage osteoarthritis of the knees. Blame street hockey or junior high football or my mother's arthritis.

My joints spaces are so narrowed medially that I have lost height due to a varus or bowlegged deformity that makes me look as if I have rounding up cattle all my life.

After a total of four surgeries, the only answer left on the (operating) table is to totally replace the knees.

I have scheduled the surgery twice now and backed off both times.

Why? Because if I vigorously exercise to stretch and strengthen my knees it partially ameliorates the pain. I am pretty good at that a home, but lousy when I am the road as I have been for 15 days in Australia.

If I use my walking sticks and acetaminophen and ice as I just did in Australia for two weeks, I can muddle through and still accomplish many miles of painful but manageable walking.

Until I fall or twist or the knees just give out on their own. And that's happening more these days.

So why have I cancelled the surgery twice now?

Due the increased bleeding risk with ibrutinib, by protocol I would have to be off my ibrutinib for one week before and three weeks after while I am on blood thinners post-op from my bilateral knee surgeries used to prevent blood clots. I have chosen to be part of the 15% or so brave or stupid patients that do both at once to get it over with and limit my time off my cancer therapy.

Here are the issues I would face:

1. Being off ibrutinib for more than 8 days almost triples (13% versus 31%) my risk of relapse. I'd be off for about a month. Here is the recent ASCO abstract that lays out the facts. 
2. Joint replacement surgery itself may be associated with an increased risk of blood cancers.  Makes sense when they are shoving titanium and glues up your hollowed out bone marrow. Reading this article will give you pause before you let an arthropod take a saw to your bones. 
3. I am at higher risk for peri-operative complications due my CLL including infections, bleeding and clots.
4. I have never lost a patient yet to osteoarthritis, but some patients who have relapsed from ibrutinib have had a poor prognosis. Here's the article from JAMA Oncology. 

Now if you dig into the studies that I am referencing, you learn quickly that the patients who went off ibrutinib for more that 8 days were generally much sicker and quite different than me and that whole study is being questioned, the total joint patients with subsequent blood cancer are still rare and a broad mix of surgeries, and the relapses post ibrutinib were clearly a different group than me.

It is important when you review any research that you critically assess if you belong to the group being studied. Except for the study on joint replacements (and even that is questionable), I don't belong to any of the study groups.

Still, as long as I can walk, I am staying away from the scalpel.

And odds are that I will be walking much better by tomorrow. The ice and rest has helped a great deal.

But there is another better option if time and circumstances allow. And they should.

We all know that as good as ibrutinib is, it is not a cure. Trials of dual and triple therapies are already opening in response to this unmet need, but I would only qualify today if I fail my ibrutinib.

I am pushing for trials that add in venetoclax (ABT-199) or a PD-1 inhibitor for that growing cohort of patients such as me who are doing well on ibrutinib or idelalasib, but who still have residual CLL. Don't wait for it to take off. Hit it while it's down by adding a second agent.

In my case under the cover of a second anti-CLL drug that doesn't effect bleeding, I would then replace my damaged knees and have control over my two biggest health issues, my cancer and my arthritis.

That's my plan and I am pushing hard to make it happen. These are good times for those of us with CLL and are options are getting better and better.

UPDATE: Knee still swollen with limited flexion on day three. Walking is not happening despite a night of elevation and ice. 80% better by day 7.

On a less personal note, the CLL Society was very busy in Australia with iwCLL 2015 being the only CLL group reporting from there, so stay tuned for some updates. Yours truly spoke in front of several hundred doctors on a panel with Dr. Michael Keating and other giants in CLL. Very humbling and very honored to have shared the patient's perspective in Sydney.

I'll be in Brooklyn Oct. 3-4 for LRF's 20th Annual North American Educational Forum on Lymphoma and would love to say hello. Drop me an email and we can try to connect.

Big news:

The CLL Society's inaugural newsletter is coming out later this month. It promises to be amazing with some wonderful articles written by fellow patients and caregivers and with some great surprises. If you haven't already, please sign up for it here. We won't share your info with anyone and you will be sure to be aware of all the upcoming posting from iwCLL and ASH and much much more. The newsletter will be quite different from this blog or  our CLL Society website, so please sign up here and don't miss it.

And if you are in the Seattle area, consider this meeting with John Pagel and a CLL patient and caregiver:

Live From LRF (Lymphoma Research Foundation) Educational Forum

View from the Brooklyn Promenade

The weather in Brooklyn is wonderful and the view from the nearby Brooklyn Heights Promenade is iconic.

But I am spending most of the daylight hours indoors at the North American Lymphoma Research Foundation Educational Forum at the Marriott.

And I am happy to be here. LRF does strong work in several areas.

This Forum is an example of the kind of high quality education that it offers on lymphoma. For the approximately 500 patients and caregivers attending, the lectures are clear and comprehensive and certainly not simplistic. All the doctors (Rick Furman and Matthew Davids for CLL) are on top of their game and all volunteer their time.

They have excellent free disease specific publications and online webcasts and more.The website is our start, especially helpful if we are new to the diagnosis.

Another strengths of LRF is funding important research. A blue ribbon scientific advisory boards reviews the grant requests.

They offer support in many ways. One example is the buddy service that links us to someone else with the same diagnosis to share war stories.

The new mobile app is a must download for any with lymphoma.

And finally, they are involved in patient advocacy, from what I see, mostly at the government level, where they work with other advocacy organizations such as LLS (The Leukemia and Lymphoma Society).

The hot advocacy issues today I heard being discussed are research funding being affected by the current budget goings-on in congress, compassionate access, and oral parity.

So what actual educational tidbits have I learned? Please understand that this is not a meeting such as iwCLL or ASH where new research results are revealed, but rather where they are pre-digested and handed back to new and experienced patients in manageable bite size packets.

In the CLL breakout session, Dr. Rick Furman made it clear that the importance of many of the new prognostic factors is becoming more or less moot as we enter an era of small molecules because these new drugs are for the most part oblivious to them. They work well for the vast majority of patients.

However, the groundbreaking work by Dr. Rai on CLL staging published in 1975 still is helpful. One strong warning: you must completely ignore the average life expectancies attached to each stage. Pay no attention to the Kaplan-Meyer curves. Those were retrospective in 1975 and bear no relationship to the present reality with improved management and better therapies. We are all living longer.

And for those who are regular readers of my blog, this last item is hardly news: Dr. Furman sees the end of chemotherapy in CLL. I sure like that.

In the general session, Dr. Sonali Smith admitted to the need to revise the lymphoma staging systems to better reflect what we have learned in the last decades. I learned that in some cases disease burden trumps staging.

Dr. Hsi, a pathologist, said that most labs could perform the bulk of the fancier diagnostic tests on a paraffin specimen. There only a few circumstance where there is a need for the better DNA preservation offered by a frozen section.

Still, before any biopsy for possible lymphoma, I would always ask the surgeon to check with the pathologist to be certain the specimen will be properly handled to give you all the results that you need. A dear friend of mine was moving rapidly towards heavy chemo (and possible transplant) for Richter's Transformation (RT) until she got an outside pathology opinion that showed the biopsy from her enlarged node had a viral infection that was mimicking RT. Whew!

In the end, what is more valuable for me than the lectures at the Forum is the networking with old and new friends with CLL, and to their credit, the meeting planners built in enough time to make sure that happens. That's the upside of having cancer: the amazing people I get to meet and the experience and wisdom and and courage they have to share.

So, if you have never been to North American Lymphoma Research Foundation Educational Forum, plan to come, and if you been before, why aren't you here?

More from tomorrow sessions soon. But first I sleep.

Day 2:

I wish I could say there was much new to report, but what I would say is the take-away message is that the role of chemo-immunotherapy (think BR, FCR, FR, PCR and others) is either dying for all of us or most of us.

I could argue that for the small subgroup of patients (mutated with the appropriate cytogenetics) where it can be predicted in advance of starting therapy that FCR offers a very high chance of a durable remission (10 years or longer) and the hint of a cure (if you are MRD negative 14 years out, are you cured?), that for those of us and only those of us fitting into that tiny cohort, there might be a diminished but important role for chemo-immunotherapy (CIT). I personally would seriously consider the choice of 6 months and done of CIT if it really offered me a 90+% chance at being cured or at a minimum a 10 year remission.

My friend Wayne (WWW) points out there is also an age sweet spot for this therapy: too old and we can't tolerate the suppression of the bone marrow, too young and the risk of secondary cancers, especially MDS (myelodysplastic syndrome) is too high.

Others says just forget the chemo. Use one TKI such as ibrutinib or idelalisib or ABT-199 as long as you can, and if you develop resistance, switch to the next one coming down the pipeline.

Or maybe add a mAb or IMID to the TKI or combine two TKIs and go for the knock out punch.

Hard to argue with that vision of a chemo free future.

The doctors are split on how to proceed, but there are all shifting their stances in response to the  growing data supporting the new meds (TKIs and mAbs)

The world is changing fast. Stay tuned in.

Coping with Cancer: Living with Leukemia and Lymphoma

Friends,

Like my hero, Chaya Venkat at http://updates.clltopics.org/ I have avoided selling anything through my website or promoting anything more than a bone marrow drive or a worthy charity.

I am now going break that rule to make a heartfelt sales pitch for a project that I was involved with in an effort to help fellow CLLers or those with other cancers.

For the last several months I have been working with my friend, Dr. Larry Deutsch an international renowned hypotherapist.

Like me, Dr Larry is a Canadian family doctor. Like me he teaches other doctors. Like me, Dr. Larry has needed to change the nature and scope of his practice because like me Dr. Larry Deutsch has CLL.

We have been collaborating on an audio file that uses his expertise and empathy and my knowledge of the disease from the inside out to help patients cope and maintain a calm sense of control with the diagnosis of leukemia and lymphoma in particular and cancer in general.

I believe that the MP3 that we produced is strong medicine. Larry is a powerful hypnotherapist with an important message.

Let me be clear. We are not promising a melting away of your cancer by a sheer act of will. We are not promising any cures. We are simply trying to build your confidence in dealing with a process that can often feel overwhelming.

Dr Deutsch did the heavy lifting on this project, but I am very proud of the part I played and very happy with the final result.

Please listen to a sample on this webpage.

Please download the MP3.

You will be glad that you did.

Every sale will generate a donation to CLLPAG in Canada and LRF in the USA, two important organizations that help the CLL and lymphoma community. I have worked with them both. Their conferences are first rate and important to many patients and caregivers, but they could do so much more with more support.

We all do so much better when we can get some help that allows us to slow down, and let go of the stress.

As I have been known to say, we are all in this together.

Hope my readers are OK with this bit of a commercial, but I am a believer in getting behind what you believe in and I do believe that how we cope with our cancer plays a role in how we do with our cancer.

I will publish more links to ASH videos over the next few days, and some stuff on 11q deletion, but tomorrow I leave for a conference on CME in Orlando for a few days.

Money well spent

This is what we need to do to find a cure. Thanks to all who helped by volunteering for a study or writing a check. We have more to do.

FOR IMMEDIATE RELEASE

Marion F. Swan

(212) 349-6435 / (347) 920-6680

mswan@lymphoma.org

Lymphoma Research Foundation Announces Recipients of CLL/SLL Research Initiative Grants

Second Round of Grants Brings Overall Total to $2,375,000

New York, NY … The Lymphoma Research Foundation (LRF) is pleased to announce that David Frank, MD, PhD of the Dana-Farber Cancer Institute and Thomas Kipps, MD, PhD, Moores Cancer Center, University of California, San Diego are the recipients of the second round of funding under the Foundation’s Chronic Lymphocytic Leukemia (CLL)/Small Lymphocytic Lymphoma (SLL) Research Initiative.

Chronic Lymphocytic Leukemia (CLL) and Small Lymphocytic Lymphoma (SLL) are the same disease with slightly different manifestations. Where the cancerous cells gather determines whether it is called CLL or SLL. When the cancer cells are primarily found in the lymph nodes, lima bean shaped structures of the lymphatic system, an essential part of the body’s immune system, it is called SLL. When most of the cancer cells are in the bloodstream and the bone marrow, it is called CLL.

John Balan, founder of the CLL Information Group with membership of approximately 1000 patients and caregivers, expressed the group’s delight with these two awards. “We have a great deal of respect for the work that Drs. Kipps and Frank have been doing with CLL. These two awards will only augment what they have already done and add to the arsenal of treatments available to patients.”

The purpose of Dr. Frank’s, A Clinical Trial of STAT3 Inhibition in Patients with CLL, will be to evaluate the benefits of targeted therapy for CLL/SLL patients. Through prior research, Dr. Frank and his team found that CLL/SLL cells are characterized by an abnormality in a protein called STAT3, which regulates genes controlling the abnormal proliferation of lymphocytes in patients with this disease. They further identified a drug that inhibits STAT3, and, with the two-year $300,000 grant from LRF, Dr. Frank will carry out a clinical trial to test its safety and effectiveness in CLL/SLL patients. This is Dr. Frank’s second LRF grant supporting his efforts to discover more effective CLL/SLL therapeutics.


Dr. Kipps’ “Gene-Chemoimmunotherapy for Intractable Chronic Lymphocytic Leukemia” will focus on developing a treatment option for CLL/SLL patients with refractory disease who have limited treatment options. Dr. Kipps and his team have found that gene-immune therapy can render drug-resistant cells sensitive to chemotherapy. With this two-year $200,000 grant, Dr. Kipps will examine the mechanism(s) of drug-resistant disease and will pursue a clinical trial examining the use of gene-immune therapy to improve the capacity of patients with CLL/SLL refractory disease to respond to chemotherapy. Dr. Kipps is a member of the Foundation’s Scientific Advisory Board.


About the Lymphoma Research Foundation

The Lymphoma Research Foundation (LRF) is the nation's largest voluntary health organization devoted exclusively to funding lymphoma research and providing patients and healthcare professionals with critical information on the disease. LRF's mission is to eradicate lymphoma and serve those touched by this disease.

As of June 30, 2008, LRF has funded over $37 million in lymphoma-specific research. LRF also provides a comprehensive series of programs and services for patients, survivors and loved ones affected by lymphoma, including our toll-free Lymphoma Helpline and Clinical Trials Information Service, in-person patient education programs, webcasts/teleconferences and support services.
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