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:



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 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. 

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. 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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Tuesday, July 4, 2017

CLL Tribune is full of articles from patients and expert on chronic lymphocytic leukemia

Last week we published the latest issue of The CLL Tribune ( We're so grateful to the patients and physicians who share their experiences and expertise to enrich our CLL Society community.

If you would like to share your story, or have ideas for future articles, please reach out to us.

This week we would again like to highlight the content from The CLL Tribune and offer caregivers the opportunity to provide feedback in our Reader Poll. You can access the survey here:

Please enjoy the articles and interviews from the Q2 2017 issue of The CLL Tribune:

•Read/view an interview with Dr. George Follows about Late Resistance to Ibrutinib from ASH 2016 in Conference Coverage.

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

•In Dr. Deborah Stephen's article find out how best to prevent infection following a diagnosis with CLL in The Basics Section

•In Beyond the Basics, learn more about navigating in the global clinical trials website,

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

•In Ask & Tell, we're looking to learn more about the caregiver experience and how the CLL Society can better help them in their role supporting the CLL patient.

Please encourage your caregiver to take a few minutes to share with us how we might better support them.

In Living Well with CLLsection, you can read about:

•I Thought I was Pre-Disastered
•My Eight Year Journey with Chronic Lymphocytic Leukemia - Part One... Treatments
•10 Months on Ibrutinib - the Odyssey Continues.
•Finding the Right Treatment for CLL Takes a Lot of Study, Timing and Some Luck!! (A cautionary account of a tricky year...)
•The Role of the Pharmacist in CLL

Tuesday, June 27, 2017

ASH 2016: Which Patients With Chronic Lymphocytic Leukemia (CLL) Become Resistant to Ibrutinib

This week I'm posting the final installment of my 3-part interview with Dr. Adrian Wiestner from the NIH where we discussed which CLL patients are more likely to relapse when being treated with ibrutinib and the options that are available if that happens. You can read my summary, and watch the interview here:
TOMORROW, the 2nd 2017 issue of The CLL Tribune will be published. Watch your email and set aside some time to read the fantastic articles in this issue, written by both patients and CLL experts. Very cool
Stay strong.
We are all in this together.

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Saturday, June 24, 2017

Ibrutinib failure as a result of progressive chronic lymphocytic leukemia (CLL) or Richter's Transformation.

This week I'm posting another interview that took place at ASH 2016 with Dr. Adrian Wiestner from the NIH where we discussed ibrutinib failure as a result of progressive CLL or Richter's Transformation. You can view my summary, and watch the interview here: 

We have posted interviews and articles about research that is being conducted to study treatment options for patients with relapsed or refractory CLL. On occasion we will make our readers of a clinical trial that is starting that might be of interest. Today we have posted some information about a trial for patients with relapsed refractory CLL who have received 2 or more prior treatments, including treatment with a BTK inhibitor such as ibrutinib or acalabrutinib. You can read more about it here:

Stay strong

We are all in this together


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