Sunday, October 4, 2015

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

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.

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Wednesday, September 30, 2015

The CLL Tribune Launched today: A Patient Driven Newsletter on Chronic Lymphocytic Leukemia


The inaugural CLL Tribune launched today at 

Don't miss it. 

Lots of hard work by many fellow patients and caregivers. So proud of there effort and the articles they wrote. Special accolades to Betsy and Janet for organizing the whole effort.

Please takes a  look at a couple of great very practical articles, one by Dr. Byrd on ibrutinib, another byDr. Brown on idelalisib, and a lot more.

Please let us know what you think of the newsletter as a whole or any particular articles. I would also like feedback on the work I did in the BASICS section on what is CLL with text and linked videos.

We want the next one in December to be even better.

Forward it to friends and send us your feedback.

Stay strong.

We are all in this together.


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Monday, September 28, 2015

Dr. Byrd on trial design and getting drugs to market for CLL ( chronic lymphocytic leukemia)

This week on the CLL Society website, we share an interview with my trial doctor, Dr. John Byrd out of Ohio State University, discussing how CLL drugs get to market and what the implications are for patients in terms of clinical trial design, especially in phase 1 trials for chronic lymphocytic leukemia.

We met at the CRC (CLL Research Consortium) Scientific Meeting in San Diego in April 2015. The CLL Society also co-sponsored a patent forum the day before the science meeting began.

There are several take-aways from my interview, however one that is critical is that we be well-informed, not just about the drugs we might be taking, but also of the details of the clinical trial design itself.

Please take a look at to see the interview and important related links.

The CLL Society’s inaugural newsletter will be emailed out midweek and we are really excited about it: Dr. Byrd is has written a long Q+A on ibrutinib; Dr. Jennifer Brown gives practical advice on idelalisib; I cover the basics of just what is CLL/SLL and more in a monolog and transcription; plus several patients including WWW have written diverse and helpful articles. If you are interested, please sign up at .

Another reason to sign up is that we will posting a backlog of great lectures and interviews and articles on CLL from CRC and my time at iwCLL over the next few months leading up to ASH and getting the alert is your best friend in knowing what new material we have posted. As always all our content is free and doesn’t demand any of of your information to be seen.

Save the date: We are planning a post-ASH patient education forum and CLL Society LA support group launch in conjunction with City of Hope on Dec. 12, 2015. More details to follow.

Exciting times, but us patients still have to keep encouraging on the researchers. We aren’t to cure yet. We need to keep pushing.

Stay strong.

We are all in this together.


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Friday, September 25, 2015

The Work Needed to Maintain our " Bright Future" with CLL (chronic lymphocytic leukemia)

This week on the CLL Society website, I present my contrarian thoughts on the “bright future” for those of us with CLL.

We have all heard repeatedly how bright the future is for those of us patients these days and we have heard it because it’s absolutely true.

We have MUCH better drugs that work for both those us at high and low risk and these new compounds generally have fewer side effects than traditional chemotherapy. We are starting to understand the biology of our cancer and that is being translated into more individualized and targeted therapies.

But my concern and that of many of the researchers that I spoke with at the large gathering of CLL experts from around the world at iwCLL 2015 in Sydney, Australia was that we might be victims of our success.

Because drugs such as ibrutinib and idelalisib and obinutuzumab are already approved in many countries and offer pretty spectacular results, pharmaceutical companies may be less willing to invest the billions of dollars it takes to bring a new drug to market. New meds likely will need to demonstrate superior results to existing therapies or meet an unmet need or treat a small unserved niche of patients or be lower cost to be approved and adopted by the CLL community.

Because of our amazing recent successes, research funds may start to dry up in CLL, with funders seeing it as a mostly solved problem.

To which I say: HOLD ON!

  • We don’t know how long we must stay on these new wonder drugs. We also don’t know how long they will work.
  • Are there sequential or combination therapies that make more sense and will allow us to eventually stop taking these expensive therapies?
  • We still have no good answers for most cases of Richter’s transformation.
  • Most importantly, none of us are cured. Except perhaps for a lucky few allogeneic transplant patients. Let’s cure our CLL.

More research and more money will be needed to answer these and other critical questions.

Please take a look at my ramblings and my short video recorded at the end of the science meeting in Sydney here.

As always we provide all our content with no need to sign in, but I urge you to sign up for our alerts if you haven’t already here. By signing up, you will also receive our inaugural newsletter, the CLL Tribune later this month and you don’t want to miss this special collection of research news, basic CLL information, some cool surprises and fun facts. Many of the articles were written by our fellow patients and caregivers.

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Saturday, September 19, 2015

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:

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Monday, September 7, 2015

Live from IwCLL 2015, Sydney, Australia: The latest news in chronic lymphocytic leukemia

Faculty for the Lymphoma Australia/CLL Society Patient Forum
Drs. Trotman (U. of Sydney) Bill Wierda (MDACC), Wiestner (NIH) and Koffman (CLL Society)

There is nothing like being at the live meeting. Nothing.

You can't mail it in. You can't send your team.

iwCLL 2015 is nothing if not intense.

When you sit in the plenary sessions, when you hear the tough questions, when you grab the doctors and researchers between sessions to hear their unrehearsed take on the latest data, you get a raw glimpse of where things are going for those of us with CLL. And let me tell you, it's going in the right direction.

I attend this meeting with a closet full of different hats: as a patient so I can learn what I need to know to stay alive, as a doctor for my patients with CLL, as an advocate to fight for patients' voices, as a reporter to bring you the latest news, as the medical director of a nonprofit forge new alliances, as an educator and moderator as a very successful groundbreaking CLL patient forum (the first ever held in conjunction with iwCLL) , as interviewee on the patient's perceptive for other news agencies, and as faculty giving a keynote lecture on how the cost of our meds effects us patients.

No wonder I am tired.

Let me just give some teasers on the news.
  1. The consensus is growing that the role of chemotherapy in treating our disease is shrinking fast.
  2. Novel therapies will be moving frontline. 
  3. Better second generation novel therapies are coming. 
  4. Figuring out the best combinations and sequencing of novel agents is the basis of many new trials aiming for limited duration therapy and a cure.

The future is bright, but only if we keep funding the necessary research with the investigators designing the best patient friendly trials and us patients volunteering for them.

Stay tuned for much news here and of course on the CLL Society website.

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Tuesday, September 1, 2015

ADH 2014: Dr. Sharman on Cell Death in CLL (chronic lymphocytic leukemia), a patient meeting, a newsletter and iwCLL


This week on the CLL Society website, in our Conference coverage section, we share the second part of an interview from ASH 2014 with Dr. Jeff Sharman with a discussion of the life and death pressures on our B cells and how that relates to ABT-199. We also cover the latest research on idelalisib and rituximab, and what research in general is still needed.

I'm heading off to the International Workshop on CLL in Sydney, Australia today and will be attending sessions and doing interviews while I'm there. I'll be posting new information upon my return. Stay tuned. We are also co-sponsoring a small patient meeting with Lymphoma Australia.

Also, we will be sending out our inaugural newsletter, the CLL Tribune at the end of September. Don't miss this special collection of research news, basic CLL information, fun facts and a wealth of wisdom and shared experiences from our fellow patients. If you are receiving this information through a CLL Society Alert email, you are already signed up to receive it. If you are reading this through another source, sign up to receive it here.

For those of you in the Seattle area, we just became aware of a patient meeting that will be held on Saturday, September 26, 2015 starting at 9:30 AM at the Sheraton Seattle Hotel. Two CLL patients will be sharing their personal stories, and Dr. John Pagel from the Swedish Hospital will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. Complimentary breakfast and parking are provided and you are welcome to bring a guest. You can view the flyer for the event here.
Stay strong.

We are all this together

Brian Koffman

Volunteer Medical Director of the CLL Society

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