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.

End of an Era

A Mythical Magical Mix of Creatures: A Chimera

Today I learned that my chimerism test in my peripheral blood was 100% host and 0% donor.

This test measure the percentage of my blood cells that are from me and from Yaakov who generously gave his hematopoietic stem cells in a effort to cure my cancer a little over 8 years ago.

While this result was hardly a surprise as my last test over 6 years ago and done from my bone marrow was 3% donor and 0% of the important T cells.

And we all knew that sadly my transplant failed years ago precisely because I rejected the graft.

Now it is clearly documented that I am no longer chimeric. Remember that a chimera is a mix of two animals- a lion and a snake and hawk as a mythical example.

I am just me- not a trace of Yaakov in my bloodstream.

Some 8 years ago, I was, for a brief hopeful few months, both Brian and Yaakov, hoping to become 100% Yaakov in my blood, with the real chance that his healthy immune system would kill on my cancer forever. That I would be cured.

Sadly, that was not to be and I lost the graft and relapsed. That story and my subsequent challenges in controlling my CLL is the genesis and the guts of this blog.

Now that era is officially closed. I did the test as there are some cases of donor chimerism climbing when patients take ibrutinib. Not me. Probably because I  already was at zero donor when I started on PCI-3275 (AKA ibrutinib) 4 years ago.

The news makes me a tiny bit sad. It reminds of a more optimistic time when I thought I might be able to forever say goodbye to CLL. While I still harbor that hope, it is tempered with heavy dose of realism.

I will be forever grateful to Yaakov for his generous and selfless gift of a chance to save to my life. And offer me a window of such hope.
SaveSave

Questions and Answers Provoked by my Blog on CLL (chronic lymphocytic leukemia)

Here are best answers to some questions I recently received. Please email questions as it is difficult to respond this way. Remember I am not a hematologist, pathologist, or transplanter.

1: Please explain if CD 19 is present on both the normal B Cell and cancerous B cell as stated here, then how can CD 5, CD 19, and CD23 be what is used to diagnose CCL per Dr. Weird in a Patient Power interview? Also, are any of the 3 CD’s mentioned above also present in T Cells? on ASH 2012: Dr. Bill Wierda on CAR-T Therapies and "Off the Shelf" T-Cells

ANSWER: CD5 is usually only found on T cells. Its presence on monoclonal B cells is not expected and thus helps diagnose CLL.

Perhaps this chart will help. The information is gained from flow cytometry. Click on it to see a larger version.

2: Hello Dr. Kauffman, I am four years out from a CLL stem cell transplant. I wondering how long ones immune system is compromised after a transplant? Would I still catch pneumonia really easy? on Dr. Byrd Updating the trial data on ibrutinib for CLL (Chronic lymphocytic Leukemia)

ANSWER: Immune recovery post transplant is slow and complicated and varies from patient to patient and even within each patient themselves. Different immune component may recover at different rates. Suffice it to say, one can remain at increased infection and cancer risk for several years after transplant, but after about two years, much of the high risk period is behind you, that is assuming you are no longer on immunosuppressive drugs for graft versus host disease(GVHD) and you are well recovered. For example, routine vaccines are usually begun between 12 and 24 months post allogeneic stem cell transplant, suggesting that your humoral immune system is fairly robust by that time.

Below is some very basic outline of post transplant care.

3: In looking at the ASCO abstract, information is not provided as to the cause of treatment interruption. An interruption due to a drug complication or cll event may have a very different impact on PFS than a break in care for surgery. Is that data available? 

ANSWER: I wish I had that data too. I do understand that many of the patients were quite sick for multiple reasons and that's why they quit. Patients who go off drug for a week or so for a minor surgery as an example should expect better results.

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.

The Perfect Stranger: Meeting Wanda's Hematopoietic Stem Cell Transplant (HSCT) Donor

Aaron, Wanda, and me, Newport Beach, 2013

My friend, Wanda had a particularly nasty form of CLL. I say had, because she has been disease free for long time, all because of the kindness of a stranger who is a stranger no more.

But I am getting ahead of myself.

Wanda had had a difficult time with her cancer. Her leukemia had resulted in multiple hospitalizations include at least twice for near death experiences with septic shock, recurrent disabling and painful infections despite heavy duty prophylaxis and an aggressive CLL clonal evolution of the dreaded 17p deletion. And I am leaving out huge chunks of her travails.

Clearly when she looked at her options a few years ago, it was apparent that she couldn't keep going much longer without more therapy, but her fragile immunity couldn't have tolerated the blows from the chemotherapy that she needed.

This has just before our awareness of the promise of the emerging TKIs such as ibrutinib (PCI-32765) and idelalisib (CAL-101) in CLL and at that time, her options were mighty limited.

Wanda bravely elected for an allogeneic stem cell transplant, but wisely chose one where there was no chemo! A transplant and CLL researcher that I knew, Dr. David Miklos at Stanford had an innovative small but growing successful series of outpatient allo-transplants for CLL using only very low dose radiation and high dose ATG (anti -thymic globulins) to briefly knock out the recipient's T cells just long enough to sneak the donor cells into the marrow. No immune suppressing chemo is used, not that all the animal antibody of the days of ATG and radiation to the gut is a risk free or pleasant experience.

Still it was perfect option for Wanda, as her dangerous period of immune suppression would be both of shorter duration and lower intensity.

Steeling her nerves, all in, ready to go for the move up to Palo Alto for the months of therapy and follow-up, her difficult to find perfect 10/10 donor backed out at the very last minute.

Emotionally sucker punched, Wanda's knees may have buckled, but ever the fighter that she is, she just got ready to face what ever would be thrown at her in the next round of her cancer battle.

Enter the perfect stranger. Or at least a nine out of ten donor. A match made in in heaven. Her transplant hopes were rebooted.

More than a year after the HSCT, she found out that this genetic near doppelgänger was a rock solid sweet family man from a small town two hours north of Houston, Texas.

Her transplant path since has had its share of scares and joys, but Wanda is CLL and infection free these days. She is living big and is always ready to be more than generous and thankful for the chances she has been offered.

Earlier this week, it was my great privilege to join Wanda and her family and friends to celebrate her donor and savior, Aaron and his wonderful young family in her backyard.

For those few of us who have had that opportunity to meet and thank the perfect stranger from miles away who's selfless actions have saves our lives, it is one of life's magic moments. We meet someone we probably would never have met. Someone whose whole upbringing and life experiences make have no common points of connection with ours. A path we might never have crossed and a hand we might never have shaken if it wasn't for their random act of kindness that mades us blood brothers.

Knowing that we truly are all in this together can change everything. It makes the world bigger and brighter.

I am still in frequent contact with my Israeli donor, Yaakov and living in gratitude for his painful and selfless efforts to help a stranger. I remember so well the tears of thanks and the tidal wave of emotion when we first met.

The world is a better place because of the work of doctors such as David Miklos (and let me share this celebratory moment with my doctor, Steve Forman, at City of Hope), true heroes such as Aaron (and my donor Yaakov), and survivors such as Wanda.

I am lucky to be able to share in these celebrations.

Yaakov and me meeting in NYC, 2009

My blog started all about my transplant adventure and has subsequently morphed more into my editorials and interviews on blood cancers, and I will write again soon about CLL and other malignancies including the still important role of transplants, but I haven't forgotten my original vision for this blog. Even though my transplant failed, it bought me the time to get to the game changing treatment with ibrutinib that I am enjoying now. If it weren't for Yaakov, my story might have ended years ago.

ASH 2012: Dr. Wierda and Practical Advice on CAR-T Trials

In part two and final part of my interview from ASH 2012 with Dr. Wierda from MD Anderson (please  see part one first to get oriented) talks about some of the practical issues, upcoming trials, and possible role of CAR-T in conjunction with the new TKIs (tryosine kinase inhibitors).

In effect, Dr. Wierda is painting a picture where a small molecule such as ibrutinib or idelalisib or ABT-199 or AVL-292 or others in the pipeline is being used to reduce the amount of disease (cytoreduction) and then adding CAR-T therapy instead of the riskier allogeneic transplant to get rid of the nagging residual disease that seems to be left by all these drugs, and with that two step chemo-free process  offering the real possibility of a cure for our CLL.

As he stated, this are still many active area of research. Here's some issues that are near and dear to me.

Why the small molecules seem to move so slowly at ridding the body of all traces of disease- maybe we are just not waiting long enough or maybe it doesn't matter? It doesn't seem to matter in many patients with CML treated with imatinib (Gleevec). Will it be the same with CLL?

Can CAR-T therapy replace allo-transplants and become a practical, affordable path to a cure? A one-two knock out punch?

What about the rare relapses in CAR-T therapy with the cancerous clonal evolving to express no CD-19 and thus are no longer targets for the the engineered T-cells?

What are the bridges to these new therapies while we are waiting for answers?

Let's here a surprisingly practical discussion with one of the doctors who is not only discussing but creating this new future.



Dr. Wierda had to run off after this segment, so there is no part 3.

But Drs. Furman and Wiestner still have important things to teach us from interviews at ASH 2012 that I will be posting soon.

ASH 2012: Dr. Pagel discusses transplants for CLL and the Role of Radioimmunotherapy

In the final short segment of my ASH 2012 interview with Dr. John Pagel, he discusses the approach to hematopoietic stem cell transplants (HSCT) or what were once only bone marrow marrow transplants in CLL. Now, we more often harvest the primitive blood stem cells from the peripheral blood after they have been mobilized. Much easier for the donor who doesn't need multiple bone marrow aspirations.

What Dr. Pagel talks about the real possibility of cure for some patients, especially those who go in to transplant with their disease in a deep remission.

The news is that using a drug such as Zevalin (ibritumomab tiuxetan), a radioimmunotherapy (a radiolabeled monoclonal antibody) or RIT in high doses is getting the necessary deep remissions and improving the odds of that cure. Ibritumomab is similar to rituximab in that it latches onto and destroys any and all CD 20+ B cells (cancerous or not), but it differs in that it carries a radioactive payload to those cells and thus destroys not just the cell, but its nearby homeys. This is especially helpful in shrinking bulky cancerous nodes, but can be dangerous if there are too many B cells left in the marrow as the local radiation delivered can cause lingering damage to the future home of the new donor stem cells. Still, it is a lower dose, more "surgical" way in many settings to get the radiation precisely  to the desired sites (at the cellular level) than is an external ionizing radiation source, no matter how focused. And most CLL, at least to start out, is exquisitely sensitive to radiation, although it always come back, and often comes back meaner. 

There are significant expense and turf issues in the medical world that explain why RIT is a very much underused therapy. Briefly, it is very costly per treatment, but is usually used only once or sometimes twice, so the total cost is comparable to a full course of say FCR. More tricky is the role of the doctors administrating it. It can mean transfer of care from the medical to the radiation oncologist and many doctors are loathe to give up control of their patients. We can argue that it needs the services of both a medical and radiation oncologist and their support teams of pharmacists, nurses, and technicians. More turf issues.

But I digress. RIT is a great choice if we need a transplant and we can get buy in from our doctors and insurance.

And the other news is that the mortality curve seems to plateau around 3, not 5 years. After 3 years, we stop relapsing. The CLL doesn't come back.

In other words, if we can make it three years out with no evidence of the cancer returning, we can be pretty confident that we are, dare I say it, cured.

Transplants are risky business, but are a sensible option for those who are young with aggressive disease, who may not have the time or the option to wait for one of the new magic pills. And they can absolutely be curative.

You can't say that about any other CLL therapy. At least not yet.

Here is Dr. Pagel. Enjoy.

ASH 2012: Dr. John M. Pagel Part 2: Present Trials and Speculations on the Near Future of Ibutinib, GS-1101, ABT-199, GA-101, TRU-016 including Combinations and the Changing Role of Transplants

I am grateful for the thoughtful, caring and careful way Dr. John Pagel tells the evolving story of CLL treatment. But I am also grateful that he is willing to speculate about what the future might hold for us CLL patients and those yet to be diagnosed.

In the follow-up to Part 1 of my interview, Dr. Pagel hypothesizes a possible future of the "game changing" emerging therapies in CLL, their paths to probable approval, logical combinations, available and coming trials, the "boots on the ground" reality of how they will be used on and off label, and the reassessing of the time and place for allogeneic transplants.

His candid observation that drugs such as ibrutinib (PCI-32765) and GS-1101(now idelalisib and formerly CAL-101) will potentially be used extensively "off label" and upfront in therapy is in my opinion, a realistic take on what is coming to the next generation of CLL patients.

When he talks about the shifting role of allogeneic transplants, we hear his wisdom and experience gained from his years of helping patients in both the pre and post imatinib (Gleevec) eras.

He informs of us the logical combinations of agents, many with no cytotoxic chemotherapy to be found anywhere in the treatment protocol, that are available right now in clinical trials and will continue to be explored.

Please be sure to view Part 1 if you haven't already. It will help with the context of this continuation of the same interview. In Part 1, there is more indepth discussion of ABT-199. In Part 2, presented below, I start by asking him about the other two big names out there ibrutinib (PCI-32765) and idelalisib (GS-1101), and he picks up from there. 

There will be a brief Part 3 soon that will deal with transplants exclusively.

Four Year Transplant Anniversary: A Request for your Help With CLL Research on Ibrutinib and More to Control and Cure CLL

I received this important email from John Byrd, my doctor at OSU, and one of the most innovative and patient friendly researchers in CLL in general and ibrutinib in particular. He is asking for your support in his fundraising efforts though Pelotonia.


Dr. Byrd is looking for ways to save lives without the risks and miseries of an allogeneic hematopoietic stem cell transplant or maybe even the use of the more toxic old school chemotherapy. 


In another email he said: The new trial that opened with Ibrutinib (Kami Maddocks PI) is being supported entirely by a 100,000 dollar grant from last years Pelotonia.  


He also wrote that the money raised is supporting the following studies that would not be happening without Pelotonia


1.  Post-doctoral fellow working on understanding role of autophagy in drug resistance in CLL
2.  PhD student working on an entirely new kinase inhibitor target for CLL 
3.  An idea grant from another lab (with us) looking at ATF3 as an immunosuppressive stromal factor in CLL


Four years ago today I had my transplant on Canada Day. It failed but I am still here.  Maybe it was a good thing that I never engrafted? I was spared the potential horrors of GVHD, but on the other hand maybe I would have been "cured" by now if it had taken. I will never know, but I do wonder.


Would I have made the same choice today with all the new options opening up?  The answer is probably not, but the data to help with that decision is far from being conclusive. We need to know more. It is so early in the research.


I am in the process of composing a post on the role of transplant in this nascent era of the new small molecules for CLL. It is an increasingly common question posed by patients and doctors alike.


If you can, please help Dr. Byrd and others in their research to get the answer to this and so many other cancer questions. Please consider clicking on the link to donate.


Thanks.


Please see Dr. Byrd's email below.


Dear Brian,

I am wrting to you because your help is needed.  I have decided to ride in Pelotonia and would greatly appreciate you to consider supporting me.  

Pelotonia is a grassroots bike tour with one goal: to end cancer. More than 10,000 supporters are expected to be a part of Pelotonia 12 on August 10-12, 2012. The ride will span two days and will cover as many as 180 miles. In its first three years, Pelotonia has attracted over 8,300 riders from 38 states, over 2,800 volunteers, hundreds of thousands of donors and raised $25.4 million for cancer research. In 2011 alone, a record $13.1 million was raised. Because operational expenses are covered by Pelotonia funding partners, 100% of every dollar raised is donated directly to life-saving cancer research at The Ohio State University Comprehensive Cancer Center-James Cancer Hospital and Solove Research Institute. I am writing to ask you to help me raise funds for this incredible event. Large or small, every donation makes a difference.

What will your donation be used for?  The money derived from this race supports research to identify new drugs and also to perform clinical trials in cancer.  I am a leukemia doctor focused on curing a disease called chronic lymphocytic leukemia (CLL).  In the laboratory, Pelotonia is supporting idea grants to bring novel ideas that might translate into new therapies some day.  Additionally, it is supporting students and post-doctoral fellows to work on new antibodies (different from rituximab) and small molecules that could some day be therapies.  Addtionally, one of the trials that Pelotonia is supporting with money rasied from last year is with ibrutinib, a highly active bruton tyrosine kinase inhibitor that is very active in CLL.   We have seen this agent help many CLL patients and are delighted to have the support of Pelotonia to allow us how to use this medication better and along the way help patients with this disease.  Without Pelotonia, the trial with ibrutinib coul
d not happen.  I see Pelotonia as a way for us to move quicker to converting cancer to a chronic disease or one that is cured.   This is something I am passionate about supporting.  I hope you will contribute and remember no amount is too small.

When you follow the link below, you will find my personal rider profile and a simple and secure way to make any size donation you wish.

Think of this as a donation not to me, or Pelotonia, but directly to The OSUCCC-James to fund cancer research. Please consider supporting my effort and this great cause. My rider profile can be found at the following link: http://www.mypelotonia.org/riders_profile.jsp?MemberID=1227

Thanks for the support!

John

Control, Not Cure: A New Path Opens Up Four Years Later - Transplant Then, BTK Inhibitor (Ibrutinib) Now

Four years ago today, I was admitted to City of Hope for a first remission hematopoeitic stem cell transplant. It was and still is the only possible path to a cure for CLL.

The only way to say: "I used to have cancer."

At that time not only was CLL incurable outside of a high risk transplant, there were no options that had even been shown to prolong life.

Now we have proven that FCR can add years to our life. The same is probably (but not certainly) true for BR and perhaps other very effective chemo-immunotherapy cocktails.

But FCR is hard on the marrow and not a great choice if you are older or more frail or have an auto-immune history such as ITP (as I do) or AIHA or if you are 17 p deleted or otherwise F refractory.

As those or you who have followed me from the get-go know, I failed my transplant because I rejected the graft. I was too healthy from an immunity perspective. With no graft aboard, I never had any of the desired graft versus tumor effect. Within a year I had relapsed and needed treatment again for my ITP and later my CLL.

The transplant didn't cure me, but it didn't kill me either. What it did do was buy me time until the game changing new therapies showed up.

Because of the brave souls who entered into phase 1 trials of an unproven and radically different  approach to CLL, I was able to follow their trail into a more mature and certain trial for a tyrosine kinase inhibitor, in my case ibrutinib (formerly PCI-32765) that blocks a pathway that is jammed in the on position inside my cancerous clone. It keeps telling my cells to proliferate and never die.

Not a cure, but a promise of longterm control with a very manageable downside.

There are other similar small molecules and pathway blockers and promising new antibodies and immune modulators out there that are changing the way we will approach CLL in particular and cancer in general.

Four years after I entered hospital on my high stakes gambit to be rid of this cancer once and for all, I am shifting gears. My transplant failed and since I never engrafted, it is almost as if it never happened. All my benefits (and risks) were from my one week of high dose FCR conditioning.

Today I am amazingly healthy after seven years of a battle with a persistent and aggressive enemy, but  now I have a kinder gentler approach and it seems to be working. Let repeat today's theme: Control if not cure.

I have made the shift. I was lucky to be able to see how the paradigm was changing and make a move. 

I can now clearly envision a new future that was just a distant speck on the horizon four years ago.

I can live with that.

G-d willing, for a long, long time.

There are lives in the balance

A painful truism in the practice of medicine is that nothing is ever casual.

No off the cuff remarks or comments are allowed. Non-medical people don't always get it. When a doctor says something, whether it is the clinic or the hospital or on the phone or in an email or during a meal or a hockey game, it has the potential to alter lives and can lead to actions that simply can't be undone. There are lives in the balance.

This is not the familiar G-d delusion that afflicts too many in my chosen field. It is the recognition of the awesome responsibility that comes with a little knowledge.

I don't for a minute believe what I say alone determines what others do, but I would be naive and self deceiving if I said I don't think I influence choices.

Today I was touched to the wick of my soul by a post from my friend Wanda on her Caring Bridge site by her thanks for nudging her towards her courageous choice of an "experimental" transplant protocol at Stanford.

I am simultaneously blessed and challenged by this burden with its mix of joys and sorrows.

This is not a burden that I can or would want to put down. A doctor is always taking a risk with someone else's health when he or she is less than thoughtful with a medical comment.

So my dear friends, please understand how hard I have worked to lighten up, to be comic force in the dark world of leukemia and all the existential decisions that diagnosis engenders. It doesn't come naturally. I am just fighting to balance both my innate and professional tendency to lead with all that possibly can go wrong.

I love what I can do and the world that my leukemia has opened to me.

I just get tired at times.

Heck, I am no G-d.

I am not even a specialist.

Answer from Dr.Steven Weinreb on why the quick transplant

Dr.Weinreb was kind enough to save me the phone calls and letters and post his response to my question as a comment. I have pasted his words here as I know some of you don't read every comment on my site.

Chaya Venkat and others have written about opportunity costs. Timing is so critical. Windows for many treatment options open and close quickly and with no warning. I always say you should get a transplant about a month before you need it, because when you need it, it may be too late.

Dr.Weinreb clearly outlines his reasoning for his decisive and sensible and courageous move.

I like to think I would have done the same.

Thanks, Steve for your post. Best wishes in the new year. Stay in touch.

Dear Brian

Thanks for the kind words! I really had no choice. I relapsed 6 moths after Rituxan/ Fludarabine. I have an agressive disease, one that appears to be unresponsive to traditional therapy. We quickly found a molecular unrelated match, and i had no time to wait. The new therapies are promising, but the timing wasn't right for me. I am at day (+) 100, feeling well, no sign of GVHD. Good luck!
Steven

Herd Immunity and transplant decision

Dr. STEVEN L. WEINREB is a young 52 year old board certified hematologist and oncologist with CLL who recently underwent a hematopoeitic stem cell transplant in an effort to cure his cancer.

What he wrote in his op-ed piece in the New York Times is an important variation on my mantra of us all being in this together. He argues persuasively for the value of everyone eligible getting vaccinated so that all our communities reach the critical mass, passing the threshold for "herd immunity" that protects those like us and newborn and others with weak immune systems who can not protect ourselves.

Please read and share his opinion piece as I have done. This editorial is an essential teaching especially this time of year. I am grateful that he wrote it and that the New York Times published it.

Dr. Weinreb is obviously bright and thoughtful, a big picture kind of guy, which make my musings about his particular circumstances even more intriguing.

What I find so interesting is that the doctor had chosen about three months ago a transplant as his way out of the CLL morass. Knowing none of his circumstances, I am itching to speak with him and pick his brain on why he, as did I, chose the most dangerous of all paths.

Maybe he'd disagree that a transplant is the most dangerous way to go.

I have argued that doing nothing is sometimes the most risky way to go. With a transplant, it's a 50/50 proposition that I am around in 10 years. Without it, I am waiting on a miracle.

Certainly throwing more toxic myelo- and immuno-suppressive chemo that the CLL clone has already proven it can tirelessly chew up and spit out, while our fragile marrow and immune cells take all the collateral damage is not only dangerous but foolish. A potential fatal misdirected drone attack, a self inflected wound. Too many cellular casualties from "friendly fire"can be the deciding factor in our final mortal battles.

But what if those were not his only alternatives?

Does Dr. Weinreb doubt the new miracle cures? Surely as a hematologist, he'd be ahead of the curve on the latest research on PCI-327654 and CAL 101 and GA-101 and lenalidomide and so many more. Did he see the paucity of bone marrow data and the short follow-ups and the infection risks as cautionary flags?

Had he run out of time or patience to wait for the perfect trial or to open his veins to yet another promising cocktail?

Had he been there and done that, tried one of the new pathway blockers or immune modulators and it failed?

Had he already set sail for a transplant in order to grab a new immune system and the treasure was too precious and fleeting to pass up?

Three months can be a life time in the quickly changing world of CLL research these days. Would his choice be different today?

Dr. Weinreb is sensibly not seeing patients right now, a time that I so well remember. I don't have his email address. I will try to reach him by a call to his office or an old school USPS letter, doctor to doctor and see if he might write a guest post here.

One more thing to do that was not on yesterday's to do list.

Happy New Year to all.

We are all in this together. And that is a good thing.

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