Monday, May 25, 2015

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 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 1st 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.


Stay strong

We are all in this together.

Brian Koffman

Volunteer Medical Director of the CLL Society

Labels: , , , , , , , , , ,

Wednesday, May 13, 2015

Use of CME (Continuing Medical Education) to impact self-reported changes in the evaluation and management of anaemia in geriatric patients: An important topic for those of us with CLL (chronic lymphocytic leukemia)

Honestly, most of my fellow family doctors (FP) know very little hematology. This may be even more true of other primary care providers.

The ABFM board exams for family doctors dedicated a whopping 1% of all the questions to hematology- that is for everything from a simple iron deficiency anemia to a life threatening acute leukemia. Not much incentive to become expert.

As one of the few FP who lives and breathe heme with a deep and abiding personal stake in making sure that all things blood related are done right, and also as doctor with a long background in teaching, in fact a masters of science degree in Medical Education (all my initials are MDCM FCFP, DABFP, MS Ed), this publication on teaching my colleagues about the importance of anemia in the elderly and all the work that lead up to it definitely was a topic in my wheelhouse.

I was lucky to be involved in all ages of this effort: helped with the content development and served as faculty for all the live presentations to thousands of primary care providers across the country and worked on the very cool mobile app: Anemia Algorithm. Click here for the iPhone and here for the Android downloads (>15,000 total downloads). Finally I co-authored what culimated in the actual peer reviewed publication

The take away message of all our educational effort is that anemia (or if you prefer the British: anaemia) is not a normal part of aging, shouldn't be ignored and is often related to bone marrow issues that can be helped by a hematologist. 

Sadly, MDS (myelodysplastic syndrome) is too often missed by my fellow doctors. MDS are a group of bone marrow disorders in which the bone marrow is dysfunctional, cancerous, and does not produce adequate healthy blood cells resulting in either anemia or infections or bleeding problems or in more difficult cases,  dangerous combination of all three, depending on what hematopoietic stem cell line or lines are effected. This is an increasingly real and common concern for us CLL patients as we live longer, especially those of us who have had chemotherapy. Past history of chemotherapy is a long recognized risk factor for developing MDS. Please take a listen to this ASH 2012 prior post on CLL and MDS from one of my co-authors, Dr. David Steensma who is a recognized world expert on MDS and geriatric anemia. My other co-authors are Jill Hays and Kathy Farmer with whom I worked at Primary Care Network on CME, and Betsy Dennison who besides doing CME and patient education, works with the CLL Society. I am lucky to be part of such a fine team of researchers and educators.

We wanted to measure if we made a difference through continuing medical education in patients' lives, and looks like we did. That is the subject of our publication.

Subsequently, I have stepped away from much of what I do in non-CLL related medical education to be able to volunteer more of my time to the nonprofit CLL Society, but I wanted to share some of the past work that I have done to educate my fellow doctors over the past several years. I am very proud of these educational endeavors and they clearly inform all that I do on the blog and even more so now on our new website, The new website is dedicated to educational efforts that move the bar higher by first surveying and assessing what is needed in the CLL community, teaching to those needs and following up to see if we made impact.

As a doctor, a patient and an educator, I and the rest of the CLL Society team try to reach beyond journalism to education, support, research, and advocacy, not just posting pleasant videos that report good news, but digging to point out the good and bad that might have serious treatment implications for us CLL patients. We have an vision: smart patients get smart care.

Labels: , , , , , ,

Monday, May 11, 2015

ASH 2014: Professor Hillmen Discusses the Trials Acceleration Program for CLL (Chronic lymphocytic leukemia)

In this week's new postings on the CLL Society website on Monday, Wednesday, and Friday (May 11th,13th, and 15th), Professor Peter Hillmen from Leeds, England outlines the sorry state of traditional trial design and the problems it creates, or more accurately the problems that it doesn't solve, for us CLL patients. Professor Hillmen heads up CLL research in the United Kingdom.

There are so many new CLL drugs and so many more possible combinations that need to be explored. And that can take a long, long time. Sadly, too long for some of us.

But Dr. Hillmen offers a practical, agile solution that is now happening in the United Kingdom.

During the three-part interview, Professor Hillmen outlines a consolidated strategy called TAP (Trials Acceleration Programme) to get us the answers we need more quickly. Trial design, surrogate markers and how well they translate with novel therapies, and statistics are explained during the course of our interview done in December 2014 at the ASH (American Society of Hematology) Annual Meeting in San Francisco.

I understand if your eyes begin to glaze over when we start to discuss trial design and statistics, but just as it is important that we know about the drugs we are getting, it is equally important that we know about trials we are getting. Proper trial design and proper rendering of the results can change and save lives.

But I will let Professor Hillmen explain it here in a direct link. His excitement and pride are palpable. Please check the CL Society website again on Wednesday and Friday for the 2nd and third parts of our interview.

As we have discussed extensively in the issue of equipoise and crossovers, trial designs must reflect the needs of the patients.

Labels: , , , , , ,

Saturday, May 9, 2015

ASH 2014: Dr. Kipps Explains ROR1 and how CLL (chronic lymphocytic leukemia) is really treated in the Community

When I had a chance at ASH (American Society of Hematology) 2014 to interview my doctor, Dr. Tom Kipps, he first talked about the ROR1 trials that has recently opened at UCSD. This has been his research passion for years and is finally in trials. So far, so good. ROR1 holds the promise to be the perfect cancer target: found on our cancer cells, including possible CLL stem cells, and not on much else.

Keeping in mind that in all likelihood, a curative therapy is going to include a biological or immune approach, so it is important to know about ROR1. I have included links to more background and the clinical trials in the article.

In the second segment of the interview, Dr. Kipps discussed the findings presented at ASH on how CLL is actually treated in the real world. Guess what! It is not according to the latest guidelines. Another reason to add a CLL expert to our team.

These two interviews can be found in the conference coverage (past years) section of the website:

Expect video updates on the website every Monday, Wednesday and Friday for the rest of the month.

Labels: , , , , , , , ,

Thursday, May 7, 2015

Three Year Anniversary on Ibrutinib for my CLL (chronic lymphocytic leukemia)

A Man and his Pills

On May 7, 2012, I swallowed my first three battleship grey pills of PCI-32765, later to be known as ibrutinib and finally Imbruvica when approved by the FDA for relapsed/refractory CLL in February, 2014. For us early adapters, most of whom like me, are still doing well in the subsequent extension trial, it is still the same grey pill and it is still called PCI-32765.

Clinical Trial NCT01217749 or PCYC-1109-CA out of Ohio State University (OSU) was a phase 1b/2 trial mixing the then very new BTK inhibitor with the then newest antibody, ofatumumab. I was in the last of three cohort. My group received the monoclonal antibody first so I actually started the trial a few months before I got to the ibrutinib. Details are described here.

Turns out that my cohort did the poorest as a bunch. Better to use the oral signal blocker first or even simultaneously to empty most of the cancer cells out of the marrow and nodes where the antibody can pick them off with no interference from their microenvironment enablers. That's why we do trials: do figure this stuff out.

But statistics predict for groups and here I am three years later in a deep deep remission. My absolute lymph count is at the low end of normal at 1000 and only 0.8% of those cells are clonal. If we do the math with just a few calculations we figure out that I only have 8 cancer cells in each microliter of blood. That not bad for someone who has a complex karyotype, 17p and 11q deletions, ZAP 70+, unmutated, CD38+, and a failed transplant.

Excellent disease control and a very deep remission, but not MRD negative. And certainly not cured.

For that elusive cure, I and most CLL patients will need a cocktail, preferably of target therapies. Fortunately some researchers agree and such trials are opening up.

During these last three years my blog has morphed from talking about my ups and downs in managing my CLL into a more universal story about the changing research and treatment paradigms in our disease.

Our newly launched nonprofit's CLL Society website: will increasingly be taking on that educational role and my blog will return to being more my personal journey and the place for me to vent and pontificate.

Just this week, our website has several new articles: an article on the WHO statement on clinical trials, the news about the breakthrough therapy designation for ABT-199 or venetoclax for my fellow 17p deleted patients, and two cool interviews with Professor Roberts from Melbourne, part of our conference coverage,  which were done at ASH 2014. Dr. Roberts talks about the mechanism of action of and the early result with venetoclax or ABT-199, a drug that he helped develop in Australia.

Every Monday, Wednesday, and Friday we will be adding new videos and articles, so check back frequently. Already on some days, the one month old is helping more folks affected by CLL than this venerable blog.

I have been asked by pessimists and worriers: How long and deep will the CLL Society's efforts at education, support, news, and advocacy continue? 

The answer is: As long as there is the need and the support for what we are doing, we will keep going.

Realistically, we desperately need to staff up in order to keep going at this pace and to expand what we are already doing. We have big plans that demand more than any one or two people can do, but we are just starting up and I am confident we will soon have the resources we need.

Stay strong.

We are all in this together.


Labels: , , , , , , , , ,

Tuesday, May 5, 2015

World Health Organization Calls for Results from All Clinical Trials to be Reported: An Important Concern for more than just CLL Patients

Betsy Dennison is a nurse practitioner and a wonderful educator with whom I have worked for more than five years in a effort to teach family doctors about the importance of the appropriate management of geriatric anemia.

Betsy also has a strong oncology and patient education background. Please take a look at the article she wrote on the WHO recent push to ensure we hear  the results of all clinical trials. No longer should negative results be buried and never see the light of day.

Please consider her commentary here on their public statement posted here, with a link to be found in our clinical trial section of our nonprofit CLL Society's newly launched website. Information on clinical trials will be a burgeoning section of our new website over the next several months.

You may find also more of interest in the many articles we used for our launch and in the new video material from ESH 2014 and ASH 2014 that will be posting every Monday, Wednesday, and Friday on until ASCO. As usual, I include my analysis, references, and summary.

We welcome your feedback through our contact link. Let us know what you like and what is missing.


Stay strong

We are all in this together.

Labels: , , , ,

Monday, April 6, 2015

Questionable Online Advice from a Physician about CLL (chronic lymphocytic leukemia): Yet Another Reason Why We Need the Best Information

OK, class. What is wrong with the advice this syndicated doctor is giving to his inquiring patient?

Here is the link to one paper's column so you can read the whole question and response. 

CLL is disease of the bone marrow

April 2, 2015

"DEAR DR. ROACH: I have been diagnosed with chronic lymphocytic leukemia at stage I, and I am experiencing swelling in my lymph nodes under my arms and in my neck..... — N.H.

ANSWER: Chronic lymphocytic leukemia is a disease of the bone marrow, an indolent (slow-growing) type of cancer. It is called CLL when the cancer cells are mostly in the blood, and small lymphocytic lymphoma (SLL) when it is primarily in the lymph nodes. These are just different manifestations of the same disease. However, if the disease is mostly in the lymph nodes, then radiation treatment usually is used, even in asymptomatic early disease. In stage I CLL, the condition typically is watched for progression."

Actually Dr. Roach is mostly correct in his definitions. CLL and SLL are the same disease with different presentations. The cancer cells are essentially identical phenotypically and immunologically. The WHO say the cancers are identical.

It is a nuanced difference, but I would argue that while CLL is usually found mostly in the blood and marrow, occasionally in patients such as myself with 11q deletion, we may have near normal lymphocyte counts and little bone marrow involvement, but may present or develop massive lymph nodes, so our CLL may be "primarily in the lymph nodes". 

For us, our cancer is a leukemia that behaves more like a lymphoma. 

In contrast, SLL presents in the nodes and when it spoils over into the blood with excessive lymphocytes (greater than 5,000 that are monoclonal) or the blood counts drops or the marrow is heavily involved, then it is becomes CLL. 

Take a look at this link for more on diagnosis.

This is a subtle point and Dr. Roach is for the most part correct as are nearly all the similar online definitions by such reputable sources as LRF, so I have no fight to pick on this point.

His admonition to watch (and wait) with Stage 1 disease is also sound counsel.

And the rest of his discussion that I didn't excerpt on herbal therapy was thoughtful and well considered.

My real concern is the statement about SLL that radiation therapy "usually is used even in asymptomatic early disease".

This simply isn't the case and would come as a big surprise to many SLL patients who have happily dodged any therapy for years.

There can be an argument made in the rare patient who present with a single cancerous node or cluster of nodes in the same tight anatomical location that removing it or sterilizing it with radiation is potentially curative, but this patient already has nodes in two anatomical locations, so a curative treatment is less likely. In fairness to Dr. Roach, there was one small (14 patients in stage 1 or 2) retrospective study from 1989 that showed an impressive 80% progression free survival at 10 years in stage 1 disease with the authors recommending early radiation therapy.  The results were less impressive with Stage 2 disease (two locations on the same side of the diaphragm) and not significant with more advanced disease.

Radiation therapy in the absence of symptoms is certainly not routine "standard of care", especially with the demonstration of more than one site involved. If considered, it certainly needs to be carefully reviewed with a CLL/SLL expert. Moreover I suspect that the role of radiation in SLL will be decreasing rapidly with the options of new targeted therapies now available that are so darn quick and effective in shrinking our nodes.

I present this case as a cautionary tale of the danger of not being abreast of the latest research and guidelines whether you are the patient or you are the doctor. Understanding the details and nuances of our disease is critical for our survival.

CLL/SLL is a relatively uncommon, but complex disease that is different in each and every one of us. We all need to be treated as individuals.

And the treatment options are changing very fast.

Many well meaning general oncologists may be badly out of date and we need to be ready to ask for a second opinion from a CLL expert. 

We all need to be our own best advocates. 

We all need to be informed.

That is why I and other CLL patients, caregivers, and experts have been working so hard and long to put together the only active patient driven, doctor reviewed, CLL educational and supportive website based in the USA.

The nonprofit 501(c)3 CLL Society Inc. website has just been launched to meet the unmet needs of the CLL community.

We aim to be the hub for all helpful reliable and valid CLL information on the web either on our website itself or through selected links to other reputable sources.

Here is our Mission and Vision statement:


The CLL Society Inc. is a patient-centric, physician-curated nonprofit focused on patient education and patient support. Dedicated to addressing the unmet needs of the CLL and related blood cancer communities, it explains the rapidly changing therapeutic landscape and the importance of clinical trials, supports and builds patient networks, and educates providers and patients alike.


We act to help shape a smarter, brighter future for those with CLL and related B cell blood cancers by encouraging and supporting smart patients, smart providers, smart clinical trials, smart healthcare delivery systems, and smart therapies.
We are careful not to replicate the fine work of many other organizations and patient forums, but looked to fill the  gaps with searchable information, with supportive articles, with interviews with experts, with news and the latest research from all the major meetings and journals, with carefully vetted links to our reliable sites, with many useful tools such as glossaries and spreadsheets for labs and updates on clinical trials and so much more.

And we are only just beginning. With the continued support of the CLL community of patients, caregivers, providers, and industry, we have big plans to fill in gaps in our information and grow in response to what the community wants. 

It will be a vibrant growing site. New material will be added regularly. Please consider signing up for alerts and the newsletter. 

Email us with feedback. Your support and comments will guide our future development. 

Let us know if you want to write for us and we will help with editing and fact checking.

After all we are all in this together.

You know who I am so I think you what you will find at robust gritty explanations of what we need to know to win in our struggles. Complex topics unpacked and explained in accessible but not simplistic terms.

I will share all the news and research, good and bad. No sugar coating. 

My blog will continue, but may gradually morph back to being more about my personal ongoing CLL journey.

For the foreseeable future, there will be some overlap with my blog and but eventually the website for the nonprofit 501(c)3 CLL Society will be the main source of all the new information and my blog will be where I tell my story and share my candid opinions.

Stay strong.

Stay in touch

We are all in this together.

Labels: , , , , , , ,