Dr. Tam on Venetoclax (ABT-199) for treating CLL (chronic lymphocytic leukemia)

Friends,

This week in the Conference Coverage section of the CLL Society website, we have posted an interview from the 2015 iwCLL meeting with Dr. Constantine Tam. We talked about Venetoclax (formerly ABT-199), the early experiences and the results that are being achieved now. It's very informative and worth watching all the way to the end. You can see that interview here.

I have posted about quite a few CLL educational meetings that have been organized by other associations in 2016 and will be posting about more as we become aware of them. We will travel to as many as possible to both create awareness of the CLL Society and our resources, but also to help organize patient/caregiver support groups where there is interest. Many of you have shared with us your locations and your interest in having a support group in your area. Know that we have captured that information and will post new information as it becomes available. The CLL Society will also be planning a few patient/caregiver educational meetings this year and we will keep you updated.

In the meantime:

CLL Meeting in Miami, FL: For those of you in the Miami area, there is a CLL patient meeting hosted by the Florida Society of Clinical Oncology (FLASCO) being held on February 24th at the Miami Marriott Dadeland at 5:00 PM. A complimentary buffet dinner will be provided. I'm not able to attend this meeting, but you'll have the opportunity to ask questions of the expert speakers. Register and find out more information here.

CLL Meeting in Atlanta, GA: For those of you in the Atlanta area, we just became aware of another patient meeting in February: Saturday, February 27th in Atlanta starting at 9:30 AM at the Sheraton Suites Galleria-Atlanta (View Atlanta flyer). CLL patients will be sharing their personal stories, and a local CLL expert will be providing a talk on the basics of CLL. You can call 844-482-6815 to register. A complimentary meal and parking will be provided and you are welcome to bring a guest. I will be at the meeting with an exhibit table and will stay afterwards to meet with attendees to discuss the resources available from the CLL Society. I look forward to meeting you there.

Stay strong.

We are all in this together

Brian Koffman

Volunteer Medical Director of the CLL Society

http://cllsociety.org

http://bkoffman.blogspot.com

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.

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 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.

Off to iwCLL 2015 to learn, teach, share, support and report on CLL ( chronic lymphocytic leukemia)

Friends

I am off to Sydney, Australia tomorrow with our nonprofit CLL Society where I will be your unpaid in person reporter from the meeting.

I am also speaking at iwCLL 2015 on a panel with Dr. Michael Keating, Dr. Andrew Roberts, and others on the Funding Equation where we will discuss ways to improve access to our meds despite their expense. I am talking about the Canadian and American patient experience.

And despite greatly discouraging logistical difficulties, we have also organized a patient Q+A session in conjunction with the wonderful team at Lymphoma Australia in Sydney for patients that are coming from as far away as New Zealand. We should have video from the doctors attending: Drs. Wierda, Wiestner, and Trotman.

It’s a very very long trip, and much work, but I am excited about this amazing opportunity to go and to share what I learn firsthand with the gang here.

Let me know if you have any burning questions for the gathered experts.

Stay strong.

We are all in this together.

Brian

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

Good News: Personal Update on my CLL (chronic lymphocytic leukemia)

Sorry for my rare posting here. 

The CLL Society has kept me way too busy, but I am trying to reestablish a balance between my posts here and there. Watch for interviews from ASH 2014 and more personal material here very soon.

My lab results tends to come in bunches- at St. Jude's, OSU and UCSD all in about a week due to a quirk in scheduling.

And all the bunches have all been good.

I am now over 37 months on ibrutinib and most of us trial guinea pigs who have done well this long, continue to do well.

There are exceptions and late resistance can develop, but it is still quite rare.

So here's the good news.

My lymphocytes flute a bit but remain just a bit above 1.  That is great.

My Hgb is hovering in the low rage of normal, so no anemia again. It's been months since I have had anemia, so maybe that diagnosis is part of my past and not my future.

My platelets are a bit high consistent with my prior splenectomy and my very dormant nearly forgotten ITP still being well behaved. I have grown blasé about happy healthy platelet numbers. No more fear and trembling waiting for my blood counts.

When we look more deeply at my blood, using the flow cytometry we find that exactly 1.0% of my lymphocytes are monoclonal B cells or CLL cells.  This is up from 0.8% 6 months earlier and down form 1.4%  three months before that.

What that suggests is that my disease is stable. Statistically identical over the last 9 months.

I wish it was continuing to trend down slowly, but it probably isn't. But is not rising either.

So what does that mean?

Could this be the long bottom of a big bowl shaped curve that will start up again at some time?

Possibly, but since I lacked the common mutations (at least when tested 3 months ago) that lead to ibrutinib resistance that is unlikely. To rest easy, I want see this month's test for mutations in BTK-PLCG2 , but I am anticipating no clouds on the horizon.

Will I be one of those who has a long long time with a low low level of disease? I can live with that is the long is several decades and the low stays where it is.

My LDH was a touch high on one sample, but OK in another, so that's the one I believe. No reason for a high LDH, so I dismiss the out of normal one.

The rest of my blood chemistries remain boring and healthy. Well, my total protein was a big low again, because I make so little antibody.

No surprise that my immunoglobulins remain low except for the artificial elevation of my IGG from my infusions of IVIG every six or seven weeks. Not much leads to those rising back to normal even when our disease is well controlled. That persistent immune deficiency remains one of the biggest unmet needs of the CLL community in general and me in particular.

Got a another great piece of lab news, actually a big relief.

My PSA was low and steady after some wild bouncing around last year and giving me a short scare that I might have prostrate cancer, not unheard of in a man in his 60s, especially one with CLL. I am no longer worried with two low levels almost a year apart.

Both Drs. Kipps and Byrd found some small nodes (1 x1cm or less) in my neck and armpits, but no big change up or down for a long time now. My liver is staying small and my spleen has not  grown back after being removed in a vain attempt to control my ITP years ago.

Before my next visit to OSU in 3 months, I must get imaging of my abdomen with an MRI (I have sworn off CT scans).

Right now, it is steady as she goes.

As I said before I do wish my levels were dropping, but there is so little experience this far out with ibrutinib, it is hard to get too worked up, and I am watched closely for any changes. 

Plus there are great options out there for a post ibrutinib world, not that I am anticipating joining that small cohort any time soon.

So that's my story.

Off to iwCLL 2015 in Australia where I am speaking on panel with Drs. Keating and Roberts and others about the high cost of cancer meds. And running a small patient education meeting with Lymphoma Australia and interviewing many CLL researchers for the blog and the CLL Society website, and meeting CLL and lymphoma patients from Australia and New Zealand.  Busy times, but I so look forward to it. And I will stay to play in Melbourne and Hobart for a week after with my wife and oldest son.

Life is good.

ESH 2014: The Future Role of FCR and new data on venetoclax and rituximab in CLL (chronic lymphocytic leukemia) and my latest lab results

I thought I sneak in one last post from LAX before I board my plane to Wroclaw, Poland via Munich.

It is mostly about the new posts on the CLL Society's website and our nonprofit's news, but I wanted to share that my latest lab results from my visit to the infusion center for IVIG remains most boring with a low normal hemoglobin, a high normal platelet count and an absolute lymphocyte count of 1.2.  YEAH! Of course that really matters is the count of clonal B cells and that takes flow cytometry, but at least I know that nothing major is happening. Slow and steady makes me happy.

This week on the CLL Society website we bring the second part of our interview with Professor Michael Hallek of Koln, Germany, the director of the German CLL Study Group and a major CLL researcher and thinker.

He starts by discussing his “fast boat” adaptive trial strategy (similar in many ways to that of Prof. Hillmen in the UK), essentially looking for the most tailored therapy based on not just predictive factors, but also on how we patients actually respond in trials. He is looking for what I call that perfect Goldilocks’ mix of “ as much as necessary, as little as possible” therapy.

In the second half of the interview, he makes a cogent argument for the ongoing use of FCR frontline in select patients. While many of us are not fans of chemo-immunotherapy (CIT), Professor Hallek has strong data to support his perspective. Listen with an open mind.

Please give a look here in our section on conference coverage from 2014.

We also share my comments and background on an important oral abstract presented at the 20^th Congress of the European Hematology Association (EHA), June 11-15, 2015 on venetoclax (ABT-199 or GDC-199) and rituximab. In relapsed patients, the total response rate, the complete response rate, the MRD- rate and the ability for some to be able to remain disease free after stopping the drug is important data that you can find here in our 2015 conference coverage section.

We have a significant backlog of important educational material mostly from large conferences such as ASH 2014 and others from 2015 that we plan to post over the next few months.

In a first step to speed up the process, our first high school intern volunteer, the granddaughter of the CLL Society's attorney, has joined us online to help her earn her community service hours by helping us catalog all the videos that we have produced and are storing on the web.

We are working hard to expand what we offer to the tens of thousands of online readers and to actuate our ambitious plans for patient-centric, physician-curated live education and support. One volunteer medical director (yours truly), his unpaid wife and one part-time RN can’t do it all, although I have to say we have made some amazing progress in our mission to meet the unmet needs of the CLL community in the less than 90 days since our nonprofit’s website launched. Our website is #1 in organic Google searches for CLL Society despite having no search engine optimization in place. We are too busy trying to get our content up.

There is so much more we must do. Your suggestions, help, support, donations, ideas, and feedback are what guide us and keep us going.

We remain forever committed to open content for all with no need to sign in or share any of your personal information to see a video or to get the help you need. If you haven’t done so already, we encourage you to please sign up to receive alerts regarding new postings and for our quarterly newsletters (first one will be published in September) and to share with other patients, caregivers or concerned family or anyone whose life is touched by CLL.

The CLL Society will be at iwCLL in Australia in September to cover the news and we are planning an amazing patient meeting the day before the researchers' meeting in Sydney with Lymphoma Australia. 

Stay strong.

We are all in this together.

Brian Koffman

Volunteer Medical Director, CLL Society