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.

We Need Your Help

Friends and Supporters,

We need your help.

The nonprofit CLL Society has prepared a two-minute video that outlines our needs and asks for your donation to allow us to continue and expand our work.

.

Please take a look at http://cllsociety.org/donate-to-cll-society/ and help us however you can.

Thanks for your consideration.

Stay strong

We are all in this together.

Brian

Brian Koffman MDCM DCFP, DABFM, MS Ed

Founder and Medical Director, CLL Society Inc.

PAN Foundation has Reopened its CLL (chronic lymphocytic leukemia) Financial Assistance Fund

Friends,

It is tough enough to have CLL, but for those of us on Medicare, the cost of some treatments can be prohibitive.

Organizations such as LLS and PAN (Patient Access Network) offer help through industry-funded pools of financial aid for those who qualify.

Here is a little early holiday gift for some of our readers.

The exciting and timely news that we have confirmed we know is that the PAN CLL financial aid fund is finally reopening on Monday, Nov. 28, 2016. We know it because PAN has chosen the CLL Society to be their partner for offering peer-to-peer CLL counseling. We have been working hard to train volunteers and to develop the policies and procedures needed to protect your privacy and offer robust help. The CLL Society is very proud to partner with PAN.

With your help, we do more than delivering the latest in-depth news in an understandable fashionway, covering ASH and the important medical conferences with interviews with the experts and daily updates., We are also producing important research that can positively influence our future care, advocating for all us around the world, and now offering peer-to-peer support from trained volunteers
Thank you for being part of the CLL Society.

Unlike other web sites, we don’t require visitors to register to gain access to our material, but honestly the number of subscribers is a metric that our supporters assess when considering the size of our grant applications. Without significant grant support, we can’t possibly do everything we are asked.that patients request. If you like what we are doing, please spread the word and ask other friends to subscribe. It really helps. You know that tell us that the news, services, and updates we share are important, relevant and helpful.

No one knows how long it will stay open, so if you need financial help for your meds, I would strongly suggest that you apply applying soon.

You can apply for assistance two ways.

Apply over the phone at 1-866-316-7263 Monday through Friday, 9 a.m. to 5 p.m. EST

OR

Visit the patient portal

https://www.panapply.org

So grab seize this early holiday gift while you still can and please tell everyone to join our community and sign up for our alerts and newsletters.

We are grateful for your participation in our work.

Stay strong.

We are all in this together.

Brian Koffman

Founder and still volunteer medical director of the CLL Society

ASH Abstract: Factors That Influence Patient Treatment Decision Making in the Era of Novel Agents and my Trip to Serbia

Today in the Conference Coverage section of the CLL Society website, we’ve posted a summary and link to the ASH abstract we wrote based on the results from our Reader Poll in the Q1 2016 issue of The CLL Tribune where we asked you about what was important to you when making treatment decisions for your CLL. You can view my article and see the abstract here.

Leaving on a jet plane. Economy class. Red-eye. Tight connection in Germany. Leave on one day, arrive the next in Belgrade. Landing at the Nicolas Tesla Airport.

This is another familiar story as I’m packing my bags to attend the 2016 CLL Horizons meeting in Serbia this week. I will serve as faculty and part of the steering committee for the newly forming CLL Advocacy Network, a global network of organizations representing people with CLL. The main goal of this first CLL Horizons conference is to build capacity for international patient advocacy organizations to support people affected by CLL.

In addition to getting ready to getting ready for the next ASH meeting, we’re also working on the content for the next issue of The CLL Tribune. If you have a question for our Ask The Doctor section, you can submit it here. No question is too silly to ask and you can be sure others have the same questions. 

Patient and Caregiver Support Meetings

November 7th @ 6:00 pm in Indianapolis, the CLL and Indolent Blood Cancers Support Group will be meeting. See more information here.

If you’re aware of other CLL Patient Support Group meetings, let us know and we’ll post them. Thanks!

Post-ASH CLL Patient Educational Forum at City of Hope

We're excited to announce that on Saturday, December 17th, in partnership with City of Hope Medical Center and the Leukemia and Lymphoma Society, the CLL Society will be hosting the second annual Post-ASH CLL Educational Forum at City of Hope. Dr. Tanya Siddiqi will be presenting on the latest data on Diagnosis and Frontline Treatment and Dr. Steven Rosen will present on Relapsed Disease and Novel Therapies. You can access the flyer here and pre-registration is requested. We look forward to seeing you there.

Patient Education Meetings

From time to time, we will make you aware of in-person Patient Education meetings coming up for those of us affected by CLL and lymphoma, specifically:

·      Wednesday, November 16^th at 6 PM at the Hilton Minneapolis/St. Paul Airport – Mall of America in Bloomington, MN: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Dr. Timothy Call, from the Mayo Clinic is the featured speaker. You can find out more information and register here. Dinner will be served and there is no charge to attend.

·      Friday, November 18^th from 7:30 AM to 2:15 PM at the Hilton Hotel City Avenue in Philadelphia, PA: The Abramson Cancer Center in partnership with the Leukemia and Lymphoma Society will be hosting 9th Focus on Leukemia, Lymphoma, Myeloma and Bone Marrow/Stem Cell Transplantation Conference. Dr. Anthony Mato is the featured speaker for the CLL Workshop. You can find out more information and register here.

·      Wednesday, December 14^th at 6 PM at the Washington Marriott Georgetown in Washington DC: The Lymphoma Research Foundation will be hosting Updates on Chronic Lymphocytic Leukemia / Small Lymphocytic Lymphoma as part of their Ask the Doctor series. Dr. Chaitra S. Ujjani from Georgetown University Hospital is the featured speaker. You can find out more information and register here. Dinner will be served and there is no charge to attend.

Heads Up! The CLL Society has become aware of a series of unbranded (no specific drug discussion) patient education meetings coming up in November. CLL patients will share their personal stories, and local CLL experts will be providing a talk on the basics of CLL. A complimentary meal will be provided and parking is free. You are welcome to bring a guest.

One member of the CLL Society will be at each meeting to show a brief video and give a talk about the impact support and education groups have had on their CLL journey. We will provide practical tips and support for setting up a local CLL group and will stay afterwards to meet with attendees who may be interested in participating in a support group in those areas. We look forward to meeting you there. The next 3 confirmed meetings are:

·      Thursday, November 10^th in Metairie, LA. More details in the flyer. Access it here.

·      Thursday, November 15^th in Independence, OH. More details in the flyer. Access it here.

·      Wednesday, November 16^th in Austin, TX. More details in the flyer. Access it here.

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

11/7/16

http://cllsociety.org

The Patients' Perspective on the Changes in CLL (chronic lymphocytic leukemia) Treatment from EHA

If you recall, a month ago I was in Copenhagen for the European Hematology Association  (EHA) meeting and I had the privilege to be asked to speak with a very distinguished panel of CLL experts at a symposium that drew over 1,000 hematologists. Recently in our Conference Coverage section, we have posted a video review by Dr. George Follows of that symposium. You can hear about the highlights here. http://cllsociety.org/2016/07/panel-discussion-management-cll-changing/

Presenting the results of the 350 patients who answered our survey on therapy really added to my credibility in front of my fellow doctors. Thanks to those who helped with that.

If you were on vacation during these first weeks of July, we’d like to call your attention to our quarterly newsletter The CLL Tribune and also request that you take 3 minutes to answer our latest short Reader Poll about what you look for in your CLL physicians. You can access it here. https://asktellq22016.questionpro.com/ Thanks to the 140 CLL patients who have already responded. It really helps. The Tribune is the product of many authors, both patients and doctors. Please enjoy the articles and interviews from the Q2 2016 issue of The CLL Tribune:

· Reading/viewing an interview with Dr. Jeff Jones about Venetoclax from the recent EHA meeting in Copenhagen in Conference Coverage

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

· Learn about what bone marrow does in The Basics Section

· In Beyond the Basics, find out about the ASCO sponsored TAPUR trial which is looking for new creative uses for already approved targeted therapies

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

· View some data from our most recent Reader Poll and share with us your opinions on CLL experts and whom you might recommend to other patients in our Ask & Tell section

· In Living Well with CLL, you can read about:

o Why You Should See a CLL Specialist

o How my Support Group Saved my Life

o I Don’t Have CLL. Yes, I Do. Now, I Don’t.

o On Being a Novice Patient

o May I Remember Never To Forget

In the meantime….

Stay strong.

We are all in this together.

Brian Koffman, MD

Volunteer Medical Director of the CLL Society

7/16/16

http://cllsociety.org

Best Personalized Care™ in CLL (Chronic Lymphocytic Leukemia)

I was asked to write one page about how our nonprofit CLL Society helped patients overcome friction points in their care. Here is what I came up with it.

The nonprofit CLL Society Inc. (CLLS) is dedicated to ensuring that all patients with Chronic Lymphocytic Leukemia (CLL), the most common adult blood cancer, get their Best Personalized Care (BPC™).

BPC is vital because CLL is in fact many diseases, ranging from a lazy or indolent cancer that doesn’t shorten a patient’s life, to a well-behaved leukemia that responds obediently to treatment, and most menacingly, to a constantly mutating disorder that quickly destroys immunity and then kills.

Each unique case of CLL demands a different therapeutic approach.

Adding to this complexity is the rapidly changing therapeutic landscape with the multiple recent drug approvals, new guidelines, exciting clinical trials, and the heterogeneity of patients. CLLS understands how difficult it can be for each patient to get the BPC.

We have developed tools to help overcome common friction points in accessing the best care:

1.     Comprehensive current information: There is a lack of up-to-date knowledge in the medical and patient community. Despite being the most common blood cancer, it is still an orphan disease. Annually for each case of CLL, there are approximately 14 new breast cancer patients and 25 survivors and 14 new prostate cancer patients and 24 survivors. Busy community oncologists simply can’t keep up with the evolving and complex nuances of individualized care for the rare CLL patient.

2.     Expert contacts: Referral to true CLL experts for 2^nd opinions and access to clinical trials can be difficult as physician networks are increasingly being narrowed. We provide links to top CLL doctors and help manage referrals.

3.     Insurance help and resources: Payors’ decisions may seem arbitrary and more determined by financial rather than clinical concerns. The appeal process demands a well-informed patient or advocate. We support patients and provide research and resources for their appeals.

4.     Self-advocacy tools: The best medications may be expensive, tricky to administer, and often need to be used very long term. Thus, their use may be subtly discouraged or not even offered by health plans and providers. Prior authorizations and tiered pharmaceutical benefits are further obstacles to best care. We provide information to help patients push for BPC and links to financial help.

5.     Compliance aids: New oral therapies put a premium on the patient’s adherence, persistence and understanding of how their medications work, effectively transferring responsibility from the provider to the patient who may need tools to help get the most out of their treatment. We have compliance tools to help track meds and labs.

The CLL Society, a patient driven, physician curated 501(c)3, is dedicated to the unmet needs of the CLL community. BPC for all is possible when patients are aware and active in their care because we believe that:

Smart Patients Get Smart Care™

U.S. Rep. Mark DeSaulnier Shares that he has CLL (chronic Lymphocytic Leukemia)

Good for him.

The rookie Democratic Congressman Mark DeSaulnier who represents the Bay area of Walnut Creek and Richmond (very near where my oldest daughter and oldest two granddaughters live) announced yesterday that he has been diagnosed, treated and is a deep remission with his CLL.

Let's read his own words from the press release on his official website: https://desaulnier.house.gov

"Before sharing my diagnosis, I had much to consider personally and professionally. My doctors assured me that people with CLL, myself included, could continue to work and function at a high level. The medical professionals were right; I have been able to go home every weekend, except one, logging over 170,000 miles flown, held 14 town halls, had meetings with thousands of constituents, and maintained a 99.1% voting average in my first session of Congress.

By publicly sharing my story, I hope to add my voice to the growing number of people fighting cancer and the other chronic conditions so many families confront. I look forward to continuing to serve the people of our district, and do so stronger and with a better understanding having faced this experience."

I couldn't agree more. 

Being a Congressman is a very public job. Lots of potential "germ" risks from all the handshaking and community meals and more. He is on a plane even more than I am. And what a demanding schedule!

And still he and his doctors say it's all OK.

Here is a link to the LA Times story.

Diagnosed last July, his CLL already required therapy and he has done well with his cancer knocked way back.

Compare this to the secrecy of jazz and funk great George Duke or actress Jill Clayborn where the diagnosis was only revealed to the public after their deaths. Readers of this blog and members of the CLL Society support groups have shared many strong opinions and had poignant and heartfelt discussions on the subject of whether "to tell or not to tell" here and in our live group meetings.

I respect and fully support my friends who choose to stay quiet for a myriad of good reasons, but I must admit I am thrilled when a public figure shares his diagnosis in the hopes of helping others.

Many of us have seen our world grow bigger and our purpose become clearer after sharing our diagnosis. Our welcome video in the bottom right corner of our home page reminds me of this constantly.

Thank you Congressman DeSaulnier for your brave and helpful disclosure. I wish you  a long and healthy life.

What Does a CLL Patient and Advocate have in Common with a Diabetes or HIV or RA or Psoriasis Advocate: Plenty

  

What do patients with HIV or aggressive autoimmune arthritis or inflammatory bowel disease or diabetes or cancer or mental illness or psoriasis have in common other than a difficult time with a chronic disease?

Turns out quite a lot if they are also patient advocates.

I have just returned from the 2^nd HealtheVoices Conference where 90 plus online patient advocates from around the world and representing a wide range of patient communities met to learn from each other and share best practices and common challenges.

The conference was a chance to reconnect with other e-advocates, meet new friends, and get out of my CLL (chronic lymphocytic leukemia) silo. I am deeply grateful to Janssen and Everyday Health for their sponsorship of the gathering. 

What follows is a few reflections formed from the conference and my life online for the last 8 years.

Patient advocates tend to be found in chronic diseases.

Although many acute illnesses may be treated sub-optimally and there can be controversy in terms of what is the best therapy, most of us either simply recover from our short-term illness or it is our terminal event. Either way, we are usually no longer involved in advocacy because we have moved on, be it from not worrying very much about a disease we can only see in the rearview mirror or from having departed this mortal coil altogether.

In one case we don’t care, in the other it’s too late.

This is no joke.

As a lighthearted example of the first circumstance, I can find no advocacy organizations or bloggers dedicated to lightening the load of the sufferers of an acute and painful sore throat. Sure, we can get plenty of advice online about symptom control for our pharyngitis and we can read guidelines about when to and not to use an antibiotic, but generally the issue is moot in about a week and half. There is simply not enough sick time to generate any sustained long-term passion.

The bigger and much darker issue is that advocacy organizations are usually filled with patients who suffer from the diseases themselves. Sadly, we patient advocates can and do get sick and die. Hence much of the advocacy work in the diseases that too often offer a short leash such as pancreatic or brain or esophageal cancers is either not by the handful of the brave survivors who beat the odds or by surrogates for the cancer fighters such as family and caregivers touched by the disease. Just as history is written by the winners, advocacy is done by the survivors. As a result, the diseases with the worst prognoses often have the fewest online resources. 

We are luckier. The first thing most patient advocates with HIV or diabetes or CLL usually have in common is time: time to consider options and shop doctors and therapies. Please check out the CLL Society’s short welcome video on that topic and more found in the bottom right corner of our opening page.

Many of us will do our doctor and treatment shopping online, so we look to reviews of other authentic health care consumer that have “purchased” the therapies that we are now considering. Patient advocates with a deep social media reach will jump to near to top of our search lists.

Another thing we usually share is being confronted with many choices. There are a dozen possible treatment options for rheumatoid arthritis (RA), but none without its side effects and risks. There are a myriad of ways to control diabetes. Not one approach is clearly best for all. Care for all CLL patients should be individualized based on a huge web of personal and disease state factors. What flavor of RA or diabetes or CLL do you have?

We ask our doctors to throw out the cookbook approach to care and treat the person in front of them. 

One size does not fit all.

The same holds true for most every chronic disease. We advocates want to get out the information to our fellow patients to support their decisions. We can provide real life and sometimes real time practical tips and handholding when needed.

And once decisions are made, we fight to make sure that everyone has access to their best options.

We advocates all work hard to provide some combination of support and information and practical experience and finally access to the best personalized therapies.

And we are all subject to the reality that we have limits. We can get tired. We can get sick. We can get overwhelmed.

Another thing we patient advocates share is the risk of burn out or compassion fatigue. This is hard work, relentless work, often unpaid or under paid, where the demand always exceeds the supply.

No wonder sessions on compassion fatigue are the highest rated at bloggers’ conferences such as the 2^nd HealtheVoices Conference.

Ultimately, we are united by our drive to help, to make a difference in our fellow patients’ lives.

So we patients who are patient advocates do indeed have much in common.

Stay strong.

We are all in this together.

Brian

Volunteer Medical Director

http://cllsociety.org

Founder

http://bkoffman.blogspot.com

Janssen Global Services paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.