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.

HealtheVoices: A Blogging and Social Media Patient Advocates' Summit this April in Chicago

HealtheVoices 2016 is a great idea and a super opportunity for anyone wanting to share best practices and needing to learn that we are not alone in our struggles to build an online patient community.

What is it is a summit that mixes together established online superstars and passionate health advocates and new learners in the digital domain.

What we all have in common is a passion to advocate for our fellow patients and caregivers, a willingness to share, and an openness to learning.

Last year there were folks there from the HIV and cancer and arthritis and colitis and diabetes and psychiatric worlds, all using the internet as a tool for education and support. While it is mostly young advocates, all ages are represented. I learnt so much and made many new friends.

Here's a video from last year's event:

HealtheVoices Revised 2015 Highlights Reel 2.2.16 from Tonic Life Communications on Vimeo.

If you look carefully, you might see me and catch my name in the credits.

This year the conference will be in Chicago April 15-17.

So if you share  my need to help other patients on the world wide web through your blog or Twitter of Facebook or wherever, please consider applying.

The link to apply and learn more is here.

See you there.

Brian

Another CLL (Chronic lymphocytic leukemia) Patient Dies Disease Free from Complications of Her Treatment

I lost another friend to CLL: a kind and powerful woman who so loved her life filled with friends and strong family support and love. She was an important and passionate member of our local support group.

Too young, too alive to be gone so soon.

She was treated at the end at one of the world's best CLL centers, but that transfer of care from a community oncologist might have come too late.

When she passed on, her CLL was nowhere to be found, but her uncontrollable GVHD (graft versus host disease) from her transplant (her sister was the donor) killed her. GVHD can be so unpredictable and so relentless.

Yet another death by treatment.

Transplant is a very blunt tool with huge collateral damage, but when the disease is on the march again and has wised up from former chemotherapy so that it can no longer be lulled back to sleep with the usual drug combos, transplant may be the only option left that offers us another chance. I am glad it's available. It can be a life saver. Or not. Remember that I opted for one for myself almost 6 years ago. That's how this whole blog started.

The issue, however, is not knocking back the CLL. That we can do most of the time. The issue is healing the patient. That is where we fall short.

That is why I am pushing for new therapies.

That is why I am looking at preserving our immunity and our marrow.

That is why we need research to rebuild our damaged B and T cells.

The pain of these losses motivates what I do here on the blog and out there in the community. Most of the time, I feel so lucky to be able to do blog and share my story and ideas and interviews.

But sometimes, like today, it just reminds me of how vulnerable that we all are and how raw are our  wounds .

Right now, once again, I will just want to stop and stoop my head and say a prayer for her family.

I am so sad.

I hate this cancer.

iwCLL 2013: My Advice to Patients about their Therapy and How to Talk with Your Doctors: Shared Decision Making

It was a delight for me to be asked by Andrew Schorr on behalf of Patient Power to be interviewed in order to share the patient's perspective on how to use all the news from iwCLL 2013 in Cologne, Germany.

I particularly like the way he took the trouble to highlight some of my points with the superimposed text.

Over the next weeks, I will have many more informative interviews to post with Drs. Kipps, Kay, Furman, Hallek and others, but I thought I would first let you hear my counsel on how to best deal with your doctor appointments.

In the meantime, please let me know what you think of my suggestions and please add your own tips and advice to the communal discussion.

This is a tricky time. So many new CLL therapies on the way, but none of them are here today, except of course in clinical trials. The right approach will be different for each and every one of us. I hope this video gives some ideas on how to have the conversations that best inform our decisions.

My recommendations touch on "share decision making" or SDM, a critical and growing part of every patients' and doctors' future. It is even incentivized in the Affordable Care Act. Here one link that has a nice general discussion and video.

iwCLL 2013 Cologne, Germany

Other blogs about transplants

I wrote this answer to a patient on ACOR or Association of Cancer Online Resources to her questions about other's experience with transplants and CLL with the bad prognostic marker of 17p del.

It sobered and depressed me to have to divulge so much bad news. I believe it is better to know. Not every one agrees,

Hi La Verne

A HSCT is narrow road, but sometimes it's the best road and sometimes it's the only road, but it is always a narrow and difficult road.

Have you contacted BMT-TALK@LISTSERV.ACOR.ORG? That's a start.

Here are some blogs:

Mine is bkoffman.blogspot.com ( not 17p but 11q CLL). I am here and doing OK 3 years post a rejected HSCT.

Wanda Zimmer is still in first 100 days with 17p del CLL at http://m.caringbridge.org/visit/wandazimmer

Chonette Taylor and Dennis Bayer have done pretty well, but they don't have a blog that I know.

And Susan's with CML http://www.caringbridge.org/visit/susanleigh is many years out, not without challenges, but living a big full life.

Another friend has done super well with both CLL and MDS post transplant: http://www.carepages.com/carepages/MyTransplantForCLLandMDS/updates/3020524?client_code=mdanderson&ipc=mur

Paul's story is helpful and pretty calm, but with some recent bad news: http://www.caringbridge.org/visit/paulplunkett

IF YOU DON'T WANT ANY REAL BAD NEWS, STOP HERE.

Robert was good friend with 17p who died suddenly post transplant: http://www.caringbridge.org/visit/robertpassananti

So did PC VENKAT, a hero of mine. He was also 11q del like me. See http://www.journal.clltopics.org/ Tough stuff

Prepare for a wild CLL/ transplant ride with Greg: http://www.caringbridge.org/visit/maddog23 He's a great writer too.

Another whom I know is Aaron who has had a tough time: http://www.caringbridge.org/visit/aaronstransplantjournal

My friend Ron didn't make it. http://www.caringbridge.org/visit/rongottula

My memory is distorted. As a doctor, I am often guided by the worst cases, as they are the ones you must learn from to best avoid repeating the dangerous moves.

I am sure that I have forgotten other voices that have guided and comforted me by sharing their trials and trails. Please forgive me.

I am so sorry to have included so many tragic stories. I personally know or knew many of these brave souls, and yet I still chose to do a HSCT and will likely do a second one. 50% or 60% odds of being alive in 10 years are way better than 0-10% if you are 17P del. Then again, statistics never predict for an individual but only for a group

Still despite all this bad news, actually odds are in your favor, but it is never easy. It is alway complicated and tough to decide and tougher to do.

Stay strong

We are all in this together. Let me know if I can help- if I haven't too scared or depressed you too much.

Brian

Posting less

The Nine Muses

I have been posting less.

This does not mean that trouble is afoot and I am waiting for the tide to turn before I can sanitized the news to safely share it.

There are three common reasons these pages go blank for days.

The first is that nothing worth reporting is happening.

Boring is good when you have cancer, very very good, but boring is also boring. Today my platelets were a wonderful 325,000, slightly higher than it was 2 weeks ago, and the first time since last May that I have gone without a weekly visit to the infusion center. Things are clearly going well.

The second reason is that at times I don't feel much like writing. The muses don't show up. This is most often because I am out of kilter, lost in direction, distracted, overwhelmed, or over tired.

The third is that I am busy writing and editing stuff with due dates.

With the the blog, I have no due dates, but that does not mean I have no responsibilities.

There is much happening when nothing is happening, much to learn when time slows down, when I have no news, good or bad, and no desire to write. It is a time to be most aware.

Thus this is precisely the time I must reconnect. As my favorite novelist, Tom Robbbins says about his writing style, I show up whether the muses do or not.

So expect me to get back to a more robust reporting.

Expect more soon on BP (not the oil company, but blood pressure), on the bats of Austin, the muses, and the considerable risks and downside of "looking good" and being inspirational.