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. 

So...

Stay tuned.

Stay strong.

We are all in this together.

Brian

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

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


Labels: , , , , ,

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 (http://www.cllsociety.org/newsletter/). 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: https://q22017.questionpro.com.

Please enjoy the articles and interviews from the Q2 2017 issue of The CLL Tribune: http://www.cllsociety.org/newsletter/

•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, clinicaltrials.gov.

•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: cllsociety.org/2017/06/cll-...
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.
Brian

Labels: , , , , ,

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: http://cllsociety.org/2017/06/ibrutinib-failure-prog-cll-rt/ 

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: http://cllsociety.org/2017/06/new-clinical-trial-rr-cll/

Stay strong

We are all in this together

Brian

Labels: , , , ,

Tuesday, June 20, 2017

Monoclonal B-Cell Lymphocytosis: A precursor to CLL (chronic lymphocytic leukemia)

This week I'm posting  on the CLL Society website an interview that took place at ASH 2016 with Dr. Neil Kay from the Mayo Clinic in Rochester, MN where we discussed monoclonal B-cell lymphocytosis or MBL, which is felt to be a precursor to CLL. You can view my summary, and watch the interview here: http://cllsociety.org/2017/06/mbl-precursor-cll/

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: http://cllsociety.org/2017/06/new-clinical-trial-rr-cll/

Our big quarterly newsletter is next week.

So much to share. So little time.

Labels: , , ,

Friday, June 9, 2017

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.

Labels: , , , , ,

Saturday, June 3, 2017

ASH 2016: Dr. Anthony Mato on Real world Data on CLL (chronic lymphocytic leukemia)

I've posted on CLLSociety.org an interview with Dr. Anthony Mato from U. Penn when we talked at ASH 2016 about the real-world research he has been doing patients being treated with ibrutinib both in the community and academic settings, and not just within clinical trials. 

You can view my summary, watch the interview or read the transcript here.

Real world data is an important and challenging growing area of research, not just in CLL bit across many diseases

Here is a link to an interview with former FDA commissioner Robert Califf, MD discussing the pros and cons of real world data and best practices for research.

I am very fortunate to be working with Dr. Mato on our CLL patient journey research survey.

Labels: , , , , ,