ASH 2016: Dr. Seymour on combination therapies for chronic lymphocytic leukemia (CLL)

Combination therapies are the future in CLL. And combinations that include venetoclax are being actively researched.

For good reasons. Venetoclax is a potent drug and a potential closer, wiping the blood and marrow clean of CLL.  Or at least to a level so low that the cancerous clone can't be found.

This week I'm posting on the CLL Society website an interview with Dr. John Seymour from the Peter MacCallum Cancer Centre in Melbourne, Australia when we talked at ASH 2016 about combination therapy with venetoclax. You can view my summary, watch the interview or read the transcript at http://cllsociety.org/20…/…/ash-2016-venetoclax-combination/.

For those of you who didn't catch this last week, check out the new 2 minute video I posted about helping to fulfill the mission of the CLL Society. You can view it at http://cllsociety.org/donate-to-cll-society/. We are so thankful to those of you who provided feedback and support us.

Stay strong

Brian

PS: I will be posting a personal update here very soon.

ASH 2015: Dr. Jeff Jones on Venetoclax for CLL relapse after ibrutinib and idelalisib.

The happy couple standing right on the equator at the most elegant Mt. Kenya Safari Club

(Just sharing it wasn't all roughing it on our trip to Kenya. We stayed for one night where the movies stars stayed in the 30s)

I’m sort of back in the swing of things and have partially caught up on sleep finally.

This week in the Conference Coverage section, we’ve posted an interview with Dr. Jeff Jones from ASH 2015 where we discussed the use of venetoclax for those who relapse after ibrutinib and idelalisib. You can view that interview here. http://cllsociety.org/2016/08/ash-2015-dr-jeff-jones-venetoclax-used-stopping-b-cell-receptor-cll/

We are pleased to announce that a new CLL Patient & Caregiver Support and Education Group will be starting in partnership with the Levine Cancer Institute – Morehead in Charlotte, North Carolina. The first meeting will take place on Tuesday, October 18th at 6:30 PM. Patients and family caregivers are welcome. Find out more about dates and registration HERE.

From time to time, we will make you aware of in-person meetings coming up for those of us affected by CLL, specifically:

·      Monday, September 19^th at 10 AM at at The Grand Central Hotel in Glasgow, Scotland: The CLL Support Association (CLLSA) is hosting a 2016 Glasgow Members Conference. Dr. Alison McCaig a consultant in the haematology department of the Royal Alexandra Hospital will be the featured speaker. Lunch and refreshments will be served and there is no charge to attend for members. You can find out more information and register here.   http://www.cllsupport.org.uk/civicrm/event/info?reset=1&id=33

·      Wednesday, September 21st at 6 PM at the New York Marriott East Side in New York City: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Rick Furman from New York Presbyterian – Weill Cornell Medical (also part of the CLL Society Medical Advisory Board) is the featured speaker. Dinner will be served and there is no charge to attend. You can find out more information and register here.  http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9419387

The CLL Society has become aware of a series of unbranded patient meetings coming up in September and October (with a few more to come in November and December). CLL patients will share their personal stories, and local CLL experts will be providing a talk on the basics of CLL. A complimentary meal will be provided and parking is free. You are welcome to bring a guest.

One member of the CLL Society will be at each meeting to show a brief video and give a talk about the impact support groups have had on their CLL journey. We will also have an exhibit table and will stay afterwards to meet with attendees who may be interested in participating in a support group in those areas. We look forward to meeting you there. The first 3 confirmed meetings are:

·      Tuesday, September 6th in Rosemont, IL at the Chicago Marriott Suites O’Hare. More details can be found in the flyer. Access it here. http://cllsociety.org/docs/CLL_Flyer_RosemontIL.pdf

·      Saturday, September 17th in Long Island, NY at Homewood Suites by Hilton Carle Place, in Carle Place, NY. More details can be found in the flyer. Access it here. http://cllsociety.org/docs/BCO_LPOP_CLL_EventFlyer_LongIslandNY_081816.pdf

·      Wednesday, September 21st in Madison, WI at Gilda’s Club Madison. More details can be found in the flyer. Access it here. http://cllsociety.org/docs/CLL_Flyer_MadisonWI.pdf

As you can see, we've been busy.

The Patients' Perspective on the Changes in CLL (chronic lymphocytic leukemia) Treatment from EHA

If you recall, a month ago I was in Copenhagen for the European Hematology Association  (EHA) meeting and I had the privilege to be asked to speak with a very distinguished panel of CLL experts at a symposium that drew over 1,000 hematologists. Recently in our Conference Coverage section, we have posted a video review by Dr. George Follows of that symposium. You can hear about the highlights here. http://cllsociety.org/2016/07/panel-discussion-management-cll-changing/

Presenting the results of the 350 patients who answered our survey on therapy really added to my credibility in front of my fellow doctors. Thanks to those who helped with that.

If you were on vacation during these first weeks of July, we’d like to call your attention to our quarterly newsletter The CLL Tribune and also request that you take 3 minutes to answer our latest short Reader Poll about what you look for in your CLL physicians. You can access it here. https://asktellq22016.questionpro.com/ Thanks to the 140 CLL patients who have already responded. It really helps. The Tribune is the product of many authors, both patients and doctors. Please enjoy the articles and interviews from the Q2 2016 issue of The CLL Tribune:

· Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage

· Read answers to reader questions by Dr. Rick Furman in Ask the Doctor

· Learn about what bone marrow does in The Basics Section

· In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies

· Learn new facts about CLL in the Did You Know section

· View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section

· In Living Well with CLL, you can read about:

o Why You Should See a CLL Specialist

o How my Support Group Saved my Life

o I Don’t Have CLL. Yes, I Do. Now, I Don’t.

o On Being a Novice Patient

o May I Remember Never To Forget

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

7/16/16

http://cllsociety.org

Dr. Jeff Sharman on some interesting clinical trials for CLL, an important Canadian survey, and much more

This week in the Clinical Trials/The Basics section of the CLL Society website, we’ve posted an interview with Dr. Jeff Sharman where we talked about how clinical trials are developing. We also reviewed some very important things that patients should know and do regardless of whether they are being treated within a trial.
You can read a summary of our discussion and watch my interview with Dr. Sharman here. http://cllsociety.org/2016/06/dr-jeffrey-sharman-best-practices-new-cll-trials/
For Patients Who Have Been Treated with Venetoclax: Lymphoma Canada is preparing a submission for the pan ­Canadian Oncology Drug Review (pCODR) for Venetoclax for the treatment of patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) who have received at least one prior therapy; this includes patients with 17p deletion.You can help by completing their survey, which will provide us with the patient input required for the submission. pCODR uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.You do not need to live in Canada to complete this survey. You can access the survey here. https://www.surveymonkey.com/r/PSPKRHK Consider taking the time to help out your fellow CLL patients in Canada. Thanks.
NEXT WEEK: We will be publishing the next issue of The CLL Tribune. You can look forward to:
· Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage
· Read answers to reader questions by Dr. Rick Furman in Ask the Doctor
· Learn about what bone marrow does in The Basics Section
· In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies
· Learn new facts about CLL in the Did You Know section
· View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section
In Living Well with CLL, you can read about:
o  WhyYou Should See a CLL Specialist
o  How my Support Group Saved my Life
o  I Don’t Have CLL. Yes, I Do. Now, I Don’t.
o  On Being a Novice Patient
o  May I Remember Never To Forget
Stay strong.
We are all in this together.
Brian Koffman, MD
Volunteer Medical Director of the CLL Society
http://cllsociety.org

Venetoclax in refractory CLL (chronic lymphocytic leukemia) patients with deletion 17p And News about Upcoming Support and Education Opportunities

Friends,

This week in the 2015 Conference Coverage section of the CLLSociety.org we have posted my final interview with Dr. Stephan Stilgenbauer while we were at the American Society of Hematology (ASH) annual meeting in December 2015 in Orlando. We discussed his late breaking abstract on venetoclax in refractory CLL patients with deletion 17p. You can see a summary and view our interview here. [http://cllsociety.org/2016/03/ash-2015-dr-stephan-stilgenbauer-dramatic-responses-venetoclax-relapsed-refractory-rr-17p-deleted-cll/]

Last Saturday, it was my privilege to speak at The Southern California Blood Cancer Conference sponsored by the Leukemia and Lymphoma Society in Anaheim, California on being your own advocate. The CLL Society team was in attendance at our booth and it was great to meet all of you who were there. It was a super meeting.

Our first satellite support and education group launched yesterday at City of Hope, Duarte CA and I believe the 15 patients and caregivers shared and learned together. We will be meeting the third Monday of each month at 7 PM of every month. For more information, view the flyer. [http://www.cllsociety.org/docs/cohmarch2016.pdf] There is no charge to attend.

We are also forming a new patient and caregiver support meeting in Charlotte, NC. If you are interested, please complete the online survey to indicate your preferences for days and times. [https://charlottegroup.questionpro.com/] We look forward to getting started. 

There is another educational meeting coming up, this time by LRF.

April 2^nd 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. [http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9357081#location] There is no charge to attend.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman

Volunteer Medical Director of the CLL Society

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

I am off to ASH 2015 to learn everything I can about CLL and I have a miserable cold.

I got my biannual cold that seems to come just as I am planning to get on the plane to the be the only family doctor among 30,000 or so hematologists and researchers from around the world.

Despite my aches and cough and runny nose, I am looking forward to learning all that I can on CLL, absorbing it and sharing it here and on the CLL Society website.

Highlights include the first data on an ew BTK inhibitor, ACP-196 (NEWS BREAK: now officially called acalabrutinib), more on other exciting drugs in development including venetoclax (ABT-199) and several promising new signal blockers and more on SYK inhibitors and new antibodies and new combos and more on approved drugs such as ibrutinib and idelalisib and obinutuzumab and ofatumumab and more smartly focused material on chemo and on new understandings of how CLL is treated in the real world and how it might be treated soon and so much more.

Plenty of interviews scheduled with experts from around the world, many whom are old friends and some who are new to me, but have published important research.

Hundreds of great abstracts (I have reviewed about 200 so far) and many oral presentations and press conferences.

I am also meeting with other patient advocates and friends from around the world to share best practices.

I will try to share some live updates from ASH 2015 because it is so exciting, but mostly I like to digest the research over a few weeks so that it can be understood and put in meaningful perspective.

The only thing missing is lots of sleep.

So now I am going to bed. Flight tomorrow AM.

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:

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

Friends,

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

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

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

Dr. Wiestner on Novel Therapies for CLL (chronic lymphocytic leukemia), Oral versus IV therapies, Idelalisib plus Chemo-immunotherapy Update and my Lingering Cold

Our very thin CLL Society team is busy preparing for the ASCO (American Society of Clinical Oncology) 2015 Annual meeting which starts at the end of this week in Chicago, but we still found time to bring three diverse and instructive new topics to our website http://cllsociety.org for this week.

Today, Monday, May 25, 2015, we posted Dr. Adrian Wiestner's thoughtful and well-considered interview from ASH (American Society of Hematology) 2014 on what is known and unknown about novel therapies. You can find that here.

Expect more video interviews and commentaries from ASH 2014 over the next several weeks.

On Wednesday, the camera is turned on yours truly for my personal take on CLL topics of interest. We include the short video and an updated transcript on this week's topic of oral versus IV medications. I think you might be surprised at some of the issues and non-issues in what would seem at first glance to be should be a simple choice. I have posted extensively about the tragedies that were associated with potent oral medications before we knew about the risk of tumor lysis with ABT-199 now known as venetoclax or in the case of lenalidomide (Revlimid), where there is also the risk of tumor flare. These risks have largely been mitigated now with new dosing protocols. Please see this prior blog post for part of the story.

 This new section on the CLL Society website using monologues and text will roll out here.

And this will be only the first in a long series of instructional postings on the various CLL therapies.

On Friday, we will post an up to the minute review of and link to an important ASCO 2105 abstract about the latest data on combining idelalisib with chemo-immunotherapy. You will find it here on Friday.

Please let us know what you think, especially about my reading and the transcripts of my monologues. You can contact the CLL Society here or email directly, but the 1^st method is preferable.

We are constantly working to respond to the unmet needs of the CLL community, so we listen carefully to what you write us and try to respond as best we can.

We don't have a big production budget and team or large institutional backing, but we keep going to offer up the most robust and recent, yet still accessible information with no gloss and no agenda other than to inform our community.

Because we believe that SMART PATIENTS GET SMART CARE™

Switching to a personal update, my wife and I are stilling struggling with a lingering upper respiratory infection aka a cold that my beautiful granddaughter shared when visiting from Chicago. No fever or cough for me. With the frequent use of a Neti pot, normal saline and steroid nasal sprays and a single shot of a decongestant (and no antibiotics), I have managed to control the symptoms and survive the pressure changes in the first of several air flights.  Both of us remain “under the weather” after a full week of symptoms, but we are slowly improving.

For most of my immune-competent patients, I would never recommend an antibiotic in such circumstances, but I am not most patients and either are any of my fellow CLLers. We are all immune comprised. Our immune systems are as dysfunctional as hyperactive adolescents who are asked to focus on a single boring multi-step math problem while the rest of the vibrant world pours on around them. Like those teenagers, my immunity’s focus is weak and easily diverted to the wrong target, having lead in the past to my nasty autoimmune problem of ITP.

Tomorrow I am at Ohio State for my three-month follow up on my ibrutinib trial.

Expecting another good lab report. Usually my neutrophils jump up when I am sick at all, even with a viral illness.

I wonder if Dr. Byrd will add an antibiotic and chide me for treating myself, always an ill-advised choice.

Personal confession: I worry about my admittedly relatively mild added illness. Worrying is already too easy to do with CLL, and even more so when we are sick. URIs can lead to chest infections and pneumonia is still the leading cause of mortality in CLL.

I will be much happier when this infection is gone.

I will be home one day this week, long enough to get my every 6 week dose of IVIG.

Late in the week, I will be Orlando for less than 24 hours to lecture on anemia and gout to some 400 primary care providers. Then I fly onto Chicago for the very busy ASCO (American Society of Clinical Oncology) Annual meeting.

Rest is not in the picture. But it is a good busy and I will be with friends everywhere I travel.

I may even get to see the little girl who gave me the cold in Chicago. If we are both well.

Thanks

Stay strong

We are all in this together.

Brian Koffman

Volunteer Medical Director of the CLL Society