Thursday, February 4, 2016

World Cancer Day and The Role of CLL (Chronic Lymphocytic Leukemia)


February 4th is World Cancer Day and there is so much we can do.

Visit their website: and learn the many ways that we can help ourselves and help others win the war on cancer.

Those of us whose lives have been touched by CLL can do even more.

No one wants cancer, but we can still squeeze some goodness from the malignant clone in our bodies.

Unlike many more aggressive cancers, CLL almost always gives us time to learn about our disease, to get the support and knowledge we need and to make a plan.

Check out our welcome video if you haven't seen it, and even if you have, visit it again in the bottom right corner on the home screen.

I watch it regularly. It helps center me.

Another weird advantage we share with other blood cancers is that our cancer is easy to sample, to biopsy. Unlike solid tumors that usually require a scalpel or at least a guided needle biopsy by a trained interventionalist, we can easily share samples of our cancer with the lab by visiting any competent phlebotomist.

Hence, CLL and other liquid cancers such as CML (chronic myelogenous leukemia) are the poster children for the development of biological (think monoclonal antibodies such as rituximab) and targeted non-chemo therapies such as imatinib or Gleevec for CML (the first truly targeted therapy and a true miracle drug) and the game changing oral medications, ibrutinib and idelalisib for CLL. And more are coming soon.

These breakthrough therapies were developed in leukemia first because our cancer is so accessible and so easy to study.

Those covering the cancer revolution may give more press to the big four cancers: breast, prostrate, lung, and colon, simply because of their overwhelming numbers, but we are where the revolt began against accepting the old limits.

We changed the paradigm. We lead the charge.

And we will remain at the bleeding edge of the therapeutic revolution if we are willing to share our blood with the researchers.  It is because of these treatment breakthroughs that CLL won the strange award of CANCER ADVANCE of the YEAR awarded by ASCO (American Society of Clinical Oncology) in 2015.

So please give your blood if asked for research.

Support us at the CLL Society in our quest to support and inform others:

Support the researchers.

We are getting close. I can smell a cure.

Wishing us all the best for 2016

Stay strong.

We are all in this together

Brian Koffman

Volunteer Medical Director of the CLL Society

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Tuesday, February 2, 2016

Dr. Kanti Rai on the Future of CLL (chronic Lymphocytic Leukemia) therapy


This week on the CLL Society website we have posted an interview with the great Dr. Kanti Rai when he sat down to chat with me during a break from the International Workshop on CLL held in Sydney, Australia in September 2015. He shared with me what is different about CLL management at the end of 2015 compared to the past 40 years. You can see that interview here. []

If you are not familiar with, or would like a refresher on the staging system that Dr. Rai developed in 1975, you can read about the Rai Staging System here, in TheBasics section.

Dr. Rai has done much to improve the care of us CLL patients and we are all in his debt.

As we are preparing for the 2016 issues of The CLL Tribune, consider sharing your story, or advice, or perspectives on how CLL has impacted your life and consider authoring an article. Send us a message and we can connect to discuss the details. []

CLL Meeting in Tampa, FL: For those of you in the Tampa area, there is a CLL patient meeting hosted by the Florida Society of Clinical Oncology (FLASCO) being held on February 11th at the Embassy Suites Tampa Airport at 5:00 PM. A complimentary buffet dinner will be provided. I’ll be there giving a talk about the importance of support groups. Also, you’ll have the opportunity to ask questions of the expert speakers. You can register and find more information here:

CLL Meeting in Charlotte, NC: For those of you in the Charlotte area, we just became aware of a patient meetings coming up in February: Thursday, February 4th in Charlotte starting at 5:30 PM at the Hampton Inn & Suites Charlotte The flyer is at 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 who may be interested in participating in a support group in the area. I look forward to meeting you there.
Stay strong.

We are all in this together.

Brian Koffman, MD
Volunteer Medical Director of the CLL Society

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Thursday, December 31, 2015

It's Always Something: Latest Lab Results Bring the Unexpected in my CLL (chronic lymphocytic leukemia)

Every seven weeks or so, I go to the cancer center associated with St. Jude in Fullerton, CA for my IVIG (intravenous immune globulins) infusion to keep my platelets nice and normal following my years of ITP (an auto-immune destruction of my platelets). And to enjoy the side benefit of preventing some infections and the chance to monitor my labs.

I always have blood drawn before the infusion. The CBC is back almost instantly and was nearly normal. My absolute lymphs were 1.6 which is high for me, but very normal and my platelets were a bit high due to prior splenectomy. No anemia or other concerns. Basically all good news.

The next morning (now),  I get my blood chemistries back. My LDH had been slowly climbing at Ohio State but was rock stable at my local lab. YEAH, as LDH can be a sign of cancer reviving up. Mu uric acid was normal but had climbed up a tad.

Bood sugar and kidneys tests were all good and my proteins were their usual minimally low due to my lack of making decent amounts of immunoglobulins, but the surprise was my markers of liver injury (AST and ALT) that have been reliably very low and healthy were unexpectedly slightly elevated. Two other liver tests that are raised when the liver ducts are obstructed were normal.

Liver tests show up at the bottom of the page of the comprehensive metabolic panel (CMP)print out, so I almost didn't scroll down to the bottom of my computer to see them as they have been my faithful and reassuring marker of normalcy for all my years with CLL. One touchstone of stability that I attribute in part to my healthy plant based lifestyle.

Ironically I rely on this very blog to jog my memory and it reminds of two forgotten times that my liver enzymes were high before: they were the worst when I first started on this trial almost 4 years ago and was getting the anti CD-20 antibody ofatuzumab, and again briefly after I returned from a cold and grueling trip to China in the winter of 2011. They soon normalized in both incidences.

This uptick today is vey slight. I don't drink alcohol and have no high risk behaviors.  In the past, I have screened negative for hepatitis A, B, and C.

I did just started CoQ-10 from my dentist and that, in doses three times what I am taking, can cause this exact issue.

I have recently recovered from a violent vomiting and diarrhea episode that was likely norovirus. It was raging through the local elementary school and senior housing. That nasty bug (a common cruise ship spoiler) can rarely cause acute severe liver inflammation, but my GI issues were gone two weeks ago.

Of course my white knight, ibrutinib itself, could be the culprit, even after more than 3 years, but that too is unlikely. IMBRUVICA  usually leaves the liver alone. And that too is good.

So no obvious villain to blame. And I feel just fine.

My plan is to advise Dr. Byrd, stop the CoQ-10 and not sip any champagne tonight.  Easy stuff.

And recheck levels in 7 weeks when I next get my IVIG.

Because the trend is my friend,  I refuse to worry about one lab blip. But that doesn't mean I won't do what I can to research and prevent the trend from moving in the wrong direction.

Take a look at our latest new letter on the CLL Society website, sign up for our alerts. They will be fast and furious in 2016 so you don't want to miss out.

2016 will be an amazing year for those of battling CLL.

Stay strong.

We are all in this together.

Happy New Year to all.

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Monday, December 28, 2015

Prevalence and Economic Burden of Chronic Lymphocytic Leukemia (CLL) in the Era of Oral Targeted Therapies.

This has been a banner year for developments in the treatment of CLL. In this last week of 2015 on the  CLL Society website, in our  Conference Coverage section, we share an interview from ASH 2015 with Dr. Nitin Jain where he discusses the Prevalence and Economic Burden of Chronic Lymphocytic Leukemia (CLL) in the Era of Oral Targeted Therapies. The success of the latest targeted therapies has increased the number of patients who are living with CLL (prevalence), but what is the economic burden of these therapies? You can view my interview with him here.

Last week, we published our second quarterly newsletterThe CLL Tribune. Don't miss this special collection of research news (Dr. Byrd's interview about ACP-196) in Conference Coverage, Dr. Furman's answers to reader's questions in Ask the Doctor, basic CLL information (What is a Lymph Node?), fun facts and a wealth of wisdom and shared experiences from our fellow patients. If you are receiving this information for the first time here, you are missing out on a lot of research news, so please consider signing up to receive it here. That said, all our content is accessible whether you sign in or not

If you have questions you like addressed in future newsletters, OR are interested in the results of the Q3 Reader Poll, OR are willing to answer a couple of questions in our current Reader Poll about the CLL Society website, please go to the  Ask & Tell section. Our goal is to fulfill the unmet needs of the CLL community, so we always welcome your feedback and questions.

For those of you in the Charlotte or Atlanta areas, we just became aware of 2 patient meetings coming up in February: Thursday, February 4th in Charlotte starting at 5:30 PM at the Hampton Inn & Suites Charlotte (View Charlotte flyer), and Saturday, February 27th starting at 9:30 AM at the Sheraton Suites Galleria-Atlanta (View Atlanta flyer). CLL patients will be sharing their personal stories, and local CLL experts 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. I will be at both meetings with an exhibit table and will stay afterwards to meet with attendees who may be interested in participating in a support group in those areas. I look forward to meeting you there.

Happy New Year!

Stay strong.

We are all in this together

Brian Koffman
PS: I easily passed my family medicine recertification exams, despite doing little family medicine continuing education and mostly hematology for the last 10 years. Next exams in 10 more years.

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Thursday, December 24, 2015

CLL Society Newsletter with Dr. Byrd on ACP-196 and Dr. Furman answering chronic lymphocytic leukemia questions and much more

The CLL Society’s 2nd newsletter is out at
There is a fresh interview with Dr. Byrd on his exciting ACP-196 data, Dr. Furman answers your questions, Dr. Sharman discussed antibodies, especially Gazyza, I review the basic anatomy of a lymph node in CLL, Terry Evans interviews Sheila Hoff, RN about being a clinical trial nurse, and most importantly fellow CLL patients write about compassion and nutrition and dealing with cancer and a transplant and much more.
Please take a look and let us know if you have any questions or even better if you want to write for us. Any feedback is welcome. 
We did 14 sets of interviews of live interviews with experts on CLL from ASH 2015 so please consider signing up for the alerts ( ) so that you don’t miss any upcoming posting, but as always, all our content does not require your sign in. If you do sign up, we won’t share your data with anyone.
Stay strong.
We are all in this together.

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Sunday, December 20, 2015

Radiation Doses- What to Worry about and What to Shrug Off when we have CLL (chronic lymphocytic leukemia)

No amount of radiation is good for us. Ionizing radiation damages DNA and increases cancer risk. No question about it. 

So avoid x-rays unless they are truly needed. Even more so for CT scans, that are rarely indicated for CLL under most normal circumstances. 

We have reviewed our increased cancer risk in prior posts when we have multiple CT scans. And Wayne Wells has written this extensive review for the CLL Society on our website. Here is a link to an article I wrote titled "The Risk Of Secondary Cancer Associated With > 8 CT Scans In Patients With NHL (Non Hodgkins Lymphoma)" Remember CLL is a type of NHL.

But what about the risk from a minor dental films or an x-ray of an extremity?  When should we worry?

My dentist has been bugging me for years to have some x-rays, and I finally said yes after he provided me with this sheet that compares a dental x-ray to a CT scan to Chernobyl. 

It gets complicated, but the bottom line is that what this chart is basically tells us is that if the x-ray machines are properly calibrated, and are used properly, and are functioning normally, we don't need to sweat the small stuff when it comes to getting imaging. Also with dental films, miscalibration, should it occur is less likely to be a big deal than it is with CT scans.

This chart is from my dentist. Click on it to expand it. Lots of good information so it is worth the squinting. Apologies for the small text.

One tiny blue box equal 0.5 μSV and that is roughly equivalent to the radiation exposure from eating 1/2 a banana. Pretty low risk. The sugar is probably more dangerous.

The unit SV or Sievert is a measure of the health effects of exposure to low dose radiation. The sievert represents the equivalent biological effect of the deposit of a joule of radiation energy or 1 gray or Gy in a kilogram of human tissue. μSV is 1 millionth (micro SV) of a Sievert. 

A chest x-ray is equal to 1 green box or 20 μSV. In the chart, there are 400 blue boxes in every green box. Next there are 500 blue boxes for each one orange box that is equivalent to 10 mSv or ten 1/thousandth of an SV or ten milli-SV. For reference 1 mSv is the average accumulated background radiation dose to an individual for 1 year, exclusive of radon, in the United States. 1 mSv is the dose produced by exposure to 1 milligray (mG) of radiation. 5000 - 8000 mG is exposure dose that kills about half of us, known as the LD50 though the damage is dependent on many factors including duration of exposure.

100 orange boxes equals one yellow box of 1 SV.  Remember that 5-8 SV  is a likely fatal dose. Ten minutes exposure next to the Chernobyl core after meltdown resulted in 50 SV, 6-10 times the usual killing dose.

Life is full of risks, but a dental x-ray is not one to worry about.

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Tuesday, December 15, 2015

Starting a CLL (chronic lymphocytic leukemia) Society Support Group in LA area

Dear friends and fellow CLLers,

If you live has been touched by CLL, then you realize how valuable a CLL specific support group can be.

And some of us live in Socal and know how long it takes it get anywhere, anytime, any day.

Regardless, let’s try to find a way to make a CLL specific support group work for as many of us in the LA area as possible. It will be worthwhile and the CLL Society will support you to ensure success.

We have a very short online survey to help figure out the best options.

Please click on or paste into your browser: and answer the questions.

We will collate this brief single page survey about dates and times and locales and get back to you.

Everything is confidential.

Feel free to contact me with any questions

I would like to start meeting in February or March at the latest. Our group in Orange County started with 3 only members more than 8 years ago and is one of the reasons that I am alive today


Stay strong.

We are all in this together.


Brian Koffman

Volunteer Medical Director, CLL Society Inc.