Tuesday, October 17, 2017

CLL Society, LLS and the Cleveland Clinic Present a Free Patient and Caregiver Educational Forum on Nov. 11 on Chronic Lymphocytic Leukemia

The CLL Society, LLS and the Cleveland Clinic are hosting a Patient and Caregiver Forum on Nov. 11. It is going to be a super educational experience with CLL expert Dr. Hill and others from the Cleveland Clinic there to answer all your questions. Bruce Wright is an amazing patient speaker and I'll be sharing what I have learned about self advocacy. 

Hope to see you there. Here is more information and a link to registration: 


Thursday, September 28, 2017

Please read the Third 2017 Issue of The CLL Tribune

Welcome to the Third 2017 Issue of The CLL Tribune.
ClicK here: http://cllsociety.org/quarter-3-2017-volume-3-issue-3/ to read the Front Page.
We've Come a Long Way-Together.
We must be doing something that is needed as over 3000 visited the website the first day the newsletter was posted. I am proud and humbled by that response.
It's hard to believe that two years have passed since the first issue of the CLL Tribune. Time goes by so quickly. And, even more remarkable, so much has happened in the CLL community in the last two years. While effective new therapies are in use, and promising ones are on the horizon, statistics alone estimate that more than 40,000 people were diagnosed with CLL during this time. But CLLsociety.org and the CLL Tribune were both there to help the newly diagnosed, as well as the CLL veteran. More than 2,500 people subscribe to the quarterly newsletter and the number climbs monthly.
The CLL Tribune and the CLL Society's website, however, would not be possible with you-the CLL patient or caregiver who walks your own special journey with this still largely incurable disease. More than 45 of you have written newsletter articles to share your knowledge and experience. We would love to have more patient or caregiver authors - reach out to us here. Twenty-seven have stepped up to lead CLL Society patient support groups in their cities with more planned to start in the near future. More than 1,000 have participated in our patient and caregiver surveys. Plus, your tax deductible contributions to the CLL Society have helped keep our mission alive. Find out more about all the things we have accomplished together http://cllsociety.org/donate-to-cll-society/
Thank you all. Stay strong. We are all in this together.

Tuesday, September 26, 2017

CLL Ireland: Dr. Munir on Combination Therapies in chronic lymphocytic leukemia

I'm in Alaska this week with my daughter's family and just enjoyed a cold and blustery day glacier cruise. I'm finally feeling a bit better though I still have a deep chest cough. 

We have a series of CLL Educational Forums planned and have opened registration for 3 of them so far. More to come! See below for dates and locations. Registration sites will be open as details are finalized. We look forward to seeing you there.

This week, as it is the end of the quarter, we'll be publishing another issue of The CLL Tribune. So much great information! You will get that special Alert soon! 

Last April I traveled to Ireland for the launch of the CLL Ireland organization during a patient program held on a Saturday in Dublin. During that time, I had a chance to talk to Dr. Tal Munir from the UK about the research they are doing at Leeds on combination therapies in CLL. You can read my article, watch the interview or read the transcript http://cllsociety.org/2017/09/munir-combination-therapies-cll/
CLL Patient Support Group Meetings Coming Up

Tuesday, September 26th at 7:00 PM in Berea, OH - The Northeast Ohio CLL Patient Support Group, sponsored by the CLL Society, will be meeting. More information here.
Tuesday, September 26th at 7:00 PM in Rochester, NY - The Rochester NY CLL Support Group, sponsored by the CLL Society, will be meeting. More information here
Saturday, September 30th at 10:00 AM in Belmont, NC - The Charlotte CLL Patient Support Group, sponsored by the CLL Society, will be meeting. More information here
Saturday, September 30th at 10:30 AM in Tampa, FL - The Central Florida CLL Support Group, sponsored by the CLL Society, will be meeting. More information here

Note: new location for this meeting.Monday, October 2nd at 6:00 PM in Indianapolis, IN - The CLL and Indolent Blood Cancers Support Group will be meeting. More information here

ALSO - We are actively forming CLL-specific support groups in a number of cities around the country.  There has been recent interest in forming support groups in the following cities: 

Complete the interest survey and let's see if we can get one going! See what other cities are looking to form support groups by clicking here. Not listed, but interested in starting one? Email us at support@cllsociety.org. Thanks!

CLL Patient Education Meetings 

CLL Society Sponsored Meeting

SAVE THE DATE: The CLL Society will be hosting a series of CLL Patient Educational Forums. Mark your calendars! 
There is no charge to attend, but registration is required!
November 4th - University of California, Irvine in Orange, CA with Dr. Susan O'Brien and Dr. Richard Van Etten. More information hereRegister here.

November 11th - Cleveland Clinic in Cleveland, OH with Dr. Brian Hill 
Hill and Dr. Matt Kalaycio. More information hereRegister here.
December 16th - Swedish Cancer Center in Seattle, WA with Dr. John Pagel. More information hereRegister here

December 16th - National Institute of Health in Bethesda, MD with Dr. Adrian Wiestner.

January 6th - Dana Farber Cancer Institute in Boston, MA with Dr. Matthew Davids.

January 6th - Moffitt Cancer Center in Tampa, FL with Dr. Javier Pinella.

January 13th - City of Hope in Duarte, CA with Drs. Steven Rosen and Tanya Siddiqi. 

January 27th - Duke Cancer Institute in Raleigh, NC with Dr. Danielle Brander

Sunday, August 13, 2017

American Society of Hematology (ASH) 2016: Dr. Adrian Wiestner on Failure of ibrutinib in chronic lymphocytic leukemia

In my interview from ASH 2016 in San Diego, Dr. Adrian Wiestner of the National Institutes of Health talks about the patients who fail ibrutinib due to disease progression.
Our interview covers important considerations for all patients when planning chronic lymphocytic leukemia treatment.
Take Away Points:
  • Responses to single agent ibrutinib in CLL have been surprisingly robust and durable.
  • Early relapses, usually within the 1st year, on ibrutinib are often Richter’s Transformation (RT). This is a more aggressive lymphoma that may have been there already and only becomes apparent when CLL has been treated.
  • RT carries a poor prognosis, but new treatments using checkpoint inhibitors (PD-1 inhibitors) or CAR-T (chimeric antigen receptor- T- cells) are promising new options in clinical trials.
  • Later relapses of CLL are often related to a mutation where ibrutinib binds (C481), rendering it much less potent.
    • It is unclear as to whether this is a new mutation that develops under the therapeutic pressures of ibrutinib or is one that was present before at levels too low to detect. Emerging evidence suggests the latter.
    • This is a slower moving relapse than with RT and gives the doctor and patient time to consider their next move.
  • Combination therapies may not be necessary for all patients, but rather a sequential use of drugs may make more sense for some patients.
Here is an article from ASCO 2017 on Richter’s Transformation after novel agents:
Here are two abstracts offering information on checkpoint blockade for RT:
Here is my interview with Dr. Wiestner:
Lingering Questions:
How to best use these drugs is not a trivial or strictly academic pursuit.
In Dr. Byrd’s Cake of Cure, he points out that while we don’t know the right mix to cure our chronic lymphocytic leukemia, we are getting closer.
I tend to believe that we should carpet bomb the CLL with a cocktail of multiple novel agents so that not one errant cell survives.
But is that even possible? And what if a few of the nastiest cells survive with all their natural checks and balances wiped out in the attack?
Does sequential therapy offer a chance at a longer life as Dr. Wiestner suggests?
These are questions only more research will answer.

Wednesday, August 2, 2017

iwCLL 2017: Deb Sims discusses her incredible CLL journey to stay alive


After some rather heavy articles on complex medical topics, this week I have a more upbeat personal interview with my Ozzie friend, Deb Sims about her incredible journey to get into a life saving venetoclax trial in England. The audio interview is here: http://cllsociety.org/2017/08/iwcll-2017-deb-sims-cll-journey/



Stay strong.

We are all in this together.



Monday, July 24, 2017

Ibrutinib, SNS-062, and CAR-NK for CLL (chronic lymphocytic leukemia)


It’s been a bit crazy, but I wanted to share that I have posted on our nonprofit’s website http://cllsociety.org an interview from ASH about the particularities of ibrutinib as compared to other BTK inhibitors from the perspective of a Janssen executive, news about a new trial of an experimental BTK inhibitor that doesn’t bind to C481 and is therefore helpful to many who become resistant to ibrutinib due mutations in that binding site, and finally some promising information on CAR-NK cells, a possible step towards a scalable "off the shelf" cellular therapy.

It seems in CLL, every week brings news and that is a good thing. In contrast and to give some perspective, it has been more than a decade since there has been a new drug to treat MDS

We post new material almost every week. It’s a lot of work, but there is always something new to learn.  Please consider signing up for our weekly alert. It helps us. Whether you do or not, as always all our material is free and we never ask you to sign in to see anything on the website. In fact, all our material is available to download.

Stay strong.

We are all in this together.


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Wednesday, July 5, 2017

Over nine years of blogging since transplant for CLL (chronic lymphocytic leukemia) on July 1, 2008

This picture, painted by son William, launched by blog and was originally painted as a way to remember me after I was gone. Now it just serves to reminds us of a more challenging time.

My story telling all started here in this blog.

On July 1, I celebrated nine years since my allogeneic hematopoietic stem cell (bone marrow) transplant. There are a ton of posts around that time pre and post about my ups and downs.

In May, it was five years since I started in a phase 1 trial of PCI-32765, now better known as ibrutinib to control by advancing chronic lymphocytic leukemia and avoid another set of death threats from plunging platelets due to my auto-immune dysfunctions or ITP (immune thrombocytopenic purpura). Lots of post sharing my inner processes and fears and triumphs.

Next September, it will be 12 years since my CLL diagnosis when I felt some lumps on the back of my neck and my blood test showed too many lymphocytes.

It's been almost 11 years since my first of five hospitalizations for crashing platelets culminating in losing half my blood after an urgent splenectomy.

I am lucky to be alive.

I am just darn lucky, but as others have said, we can at least to some extent, make our own luck as I have tried to do by becoming an expert patient and an advocate for myself and others with CLL.

And the last dozen years has had more than its share of rewards.

During these times, I have written my will, but I have not made any concrete funeral plans. I don't believe I am going soon and will likely change my ideas for the best memorial as I age. Plus I am too busy and alive.

I have walked two daughters down the aisle, and been blessed with 3 granddaughters. 

I have outlived by father of blessed memory. That was not likely when I has first diagnosed.

I have attended too many funerals of other CLL patients and a few friends who helped me on this journey.

I have held in my arms euthanized pained and sick cats and dogs as they breathed their last.

I have moved my home several times, quit work as a family doctor because I was too sick, fatigued and immune suppressed, and now returned to my medical practice, still sick, fatigued and immune suppressed, but making it work, making a difference in my patients' lives.

My blog tells much of the story until about two years ago, when it fell almost silent, mostly just echoing what was happening with my new love, the nonprofit CLL Society Inc. http://cllsociety.org 

It happened because it became clear that my chronological tale of my own failed transplant, brushes with death, hard decisions and my life saving move to Ohio for an experimental treatment, while cathartic for me, and helpful for many, was not the best way to share what I had fought hard to learn over the last decade.

I set up the nonprofit CLL Society Inc. http://cllsociety.org which is much bigger than my particular story and is as wide as it is deep in CLL knowledge and wisdom because many others pour their experience into it.

There we are saving lives. There we are changing how CLL is treated. 

But it all started here.

It has been amazingly rewarding as I have traveled the world talking to CLL doctors and patients and industry about the patients' perspective. I have friends wherever I  go around this small globe: doctors, researchers, patients, advocates, and caregivers, that know me or the CLL Society or this humble blog.

But setting up a nonprofit, especially one with a ferocious appetite for new material and research that yours truly produces nearly every week, one that does its own research and advocacy and teaching and consulting, all with a amazing but tiny staff and wonderful volunteers,  plus practicing family medicine again where the burnout rate is soaring, keeping pace with the rising bureaucratic demand of medicine, and being an an available husband, father, grandfather and friend doesn't leave much time for blogging.

The blog has been neglected, given short shrift. Like the wayward husband who leaves his true love who stood by him for years for a younger trophy wife, I make the excuse that I have outgrown it.

But I haven't. 

I still need it.

And I believe that it still fills a need for others.

Despite my years of benign neglect, it was just rated as one of the top 10 leukemia blogs and has had over 1,100, 000 page views.  Over 1,100 posts since I started in April, 2008.

I am not promising that I will be posting daily again soon. In fact I am sure that I won't, but I did post this one and that's a start. 

I have other burning issues that would be best shared here as a good place to noodle about my concerns and decisions. 


Stay tuned.

Stay strong.

We are all in this together.



If the CLL Society has helped you or a loved one, please consider making a contribution.

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