Learning from and about cancer (chronic lymphocytic leukemia or CLL) by Dr. Brian Koffman
What started as a personal journey of a doctor turned patient morphed into a way to share what’s universal in dealing with cancer, in my case a nasty leukemia (CLL), a failed transplant and a successful clinical trial. The telling of my journey has become a journey to teach about CLL, related blood issues and all cancers. Please visit our new website http://cllsociety.org for the latest news and information. Smart patients get smart care™. If you want to reach me, email bkoffmanMD@gmail.com
Monday, March 29, 2010
My copies of my op-ed from the Washington Times arrived today. It was the lead article in the commentary section spread across most of the front page with a huge graphic of a donkey and elephant entangled in a winged caduceus, placed above a piece by another doctor and a congressman. I may take a picture of it, but I am afraid to open freshly healing wounds, and health care is yesterday's news, isn't it?
Anyway, today is concerned with bigger issues. Eternal issues. It is about moving from despair to joy, from slavery to freedom. Today is about shaking off our internal Pharaohs that stop us from being whom we should be. It is about self liberation, and liberation of those trapped in far worse circumstances. It is about connecting with the past and the future, and remembering the redemptive powers within and the need to build a better world without. Change may start within, but it mustn't stop there. It is about freeing ourselves and others from meaningless attachments and lousy repetitive tapes. We are here to succeed, to grow, to feel and share joy.
I am just back from the memorial service for a friend 10 years younger than me, diagnosed with CLL two years after me, who had his transplant two months before mine. This is a rotten disease that doesn't play nice.
I wish I had the faith to believe that it all evens out in some incomprehensible eternity.
My only cold comfort is to paraphrase the words of G-d to Job and Jesus to his followers who seemed to say: "I am G-d and you're not." I guess that it is a better toehold in a world worth living in than to say that it is all meaningless. What I do believe is that the conversation doesn't end with the grave. The holy principle of parsimony begs that a person lives on with clear and tangible influences on this world likes Patrick Swayze's Ghost, but that does not mean there is more to this world than meets the eye.
I will live as this is all there is, and will cling with considered desperation to this earthly plane. I'm sad, but I am also OK. For now, that gestalt will see me through these present storms and those to come. It imbues my life with meaning and mitzvah so that in the distant future when my influence is only what remains of my work and my memory, it will be a force for good and strength.
My friend achieved that through his exemplary life and faith. His wife's, at time joyful, too often painful recounting of the ups and downs, and downs and downs and downs of his struggle has helped so many, known and unknown, in understanding their choices in the battles with their personal dragons. Thank you for writing and posting when it must of been so hard.
Later I will share what I have gleaned, medically and psychologically, from this tragic tale as the greatest lessons are learned from our fumbles and failures. But at what a price! What a price! Did I mention that is is a rotten disease?
A fellow member of our CLL support group reflected that we had lost our first member. That surely is the truth, but it implies that a second and third will be following. That too is surely true, but not for another 40 years or so, please.
I may be no St. George, and my friend may not have killed his dragon, but may all our exploits be as mythical. The dragon slaying rhetoric favored in the CLL community hits the right tones of bravery, faith, and daring-do, but for me, I need something more concrete to image.
Heaven or no heaven, dragon-slaying or no dragon-slaying, faith or no faith, we all, in our own ways, are doing our gritty best in trying circumstances to make good choices and make sense of a world full of pain.
Do you ever get an email you know you just don't want to open? Like when the phone rings at 3 AM and you don't know anyone who is expecting, so you anticipate bad news. Got that email today. A young friend with a younger family who had a transplant a few months before mine for his aggressive CLL lost his fight yesterday. His last supercharged DLI cleaned out all the CLL from his marrow and nodes. Ironically, he was cured of his cancer, but at what cost? Recurrent infections after endless months of severe GVHD and end stage renal failure beat him down to the point he just couldn't rise again.
He had what would seem to be a winning hand. A religious man. A spotless lifestyle. A marathon runner. Great insurance. Smart and willing to travel to get the best experts. Huge support network and a big safety net of loving family and friends. And a truly nice guy.
It made no damn difference. So sad. So very sad.
I will miss him.
And I'll admit it's scary too. The only two people I have met face to face who have had transplants for CLL are both dead, and I thinking of tempting fate again.
Ron and PC, this is a hard knock world. Thank you and your wives for sharing your struggles so others might learn from your courage and wisdom.
"Life is a very narrow bridge. The important thing is not to be afraid" Rebbe Nachman of Bratslav
Today I took a break from preparing for a sudden trip to Vancouver to see a less vital father, so sad, so sad. Today I walked away from a conversation with myself about transplants and leukemia and the pep talk to build the energy needed to stare down the demons a second time. Today I stayed out of the storm left in the wake of my Washington Times op-ed that has cost me some friends and opened my eyes to what I needed to see. Today I quit reading medical education articles to mark up and sharpen.
Today instead I listen for a little over an hour to the poetry of David Whyte, and he reminded me that I must step out of the safety of the boat, that a courageous step is one taken when there is no certainty that the surface will hold me, and faith has more to do with focus and purpose than a fixed set of beliefs.
I have traveled far in the last month in every sense of the word, and tomorrow I am getting on a plane to hold the hand my sick father.
I will share the stories from Israel and Giza and our harrowing crossing the Sinai, from Stanford and Sea Ranch, from the Honda Center and from White Rock, Canada, from my sufficient platelets to my hungry soul.
I promise. For my own sake.
It will help me focus. It will force me to step out of the boat onto the surprising supportive surface of the water of the Kinneret.
Here is a poem that I first heard David read, though it is not his work. Enjoy
One day you finally knew what you had to do, and began, though the voices around you kept shouting their bad advice- though the whole house began to tremble and you felt the old tug at your ankles. "Mend my life!" each voice cried. But you didn't stop. You knew what you had to do, though the wind pried with its stiff fingers at the very foundations, though their melancholy was terrible. It was already late enough, and a wild night, and the road full of fallen branches and stones. but little by little, as you left their voices behind, the stars began to burn through the sheets of clouds, and there was a new voice which you slowly recognized as your own, that kept you company as you strode deeper and deeper into the world, determined to do the only thing you could do- determined to save the only life you could save.
Mary Oliver, Dream Work, Grove Atlantic Inc., 1986 & New and Selected Poems, Beacon Press, 1992.
The ongoing health care debate is of more than academic interest to me. It is not an exaggerationto say that if I still lived where I was born, in Ontario, I could be dead.
As a board-certified family-medicine doctor, educator, dual citizen of Canada and the UnitedStates, and a patient with a dangerous blood cancer, I have seen medical care from both sides ofthe examining table and both sides of the border.
I am fiercely proud of Canada, the country of my birth. I am forever grateful and in debt for myworld-class education as a medical doctor at McGill University in Montreal, Quebec.
But I cannot return to Ontario, where I started my medical career, until I am convincingly cured ofmy own medical problem, an aggressive form of chronic lymphocytic leukemia (CLL). I musthappily stay in California, my adopted and beloved home for the past 30 years.
I just can't take the chance with my health.
The drug that saved my life, rituximab, is very expensive (thousands of dollars per cycle on eitherside of the border, but admittedly more in the United States) and is not covered by the provincialhealth insurance plans in much of Canada, despite large, well-designed studies that have provedclearly that it is the critical piece of the only treatment known to extend life with my type ofleukemia. In my case, I developed a bleeding complication and without rituximab as part of mytherapy regime, my status was, as we doctors are wont to say, "guarded."
Because rituximab is paid for in only some Canadian provinces, it has created what Bill Hryniuk,past chairman of the Cancer Advocacy Coalition of Canada, has called a "postal-code lottery forcancer drugs." Live in a province that covers the medication, and you get state-of-the-art treatment.
Live elsewhere, and your care is clearly inferior. That is just the truth.
I would love to see universal heath care coverage. It is the compassionate and moral thing, but it isonly fair to point out the negative effects of the economic realities that universal care wouldimpose.
It comes down to whom you cover versus what you cover.
You must make those hard decisions in a world of limited resources. To think otherwise is naive.
Universal coverage courageously extends its umbrella to all the population, but shouldn't it alsocover all proven therapies? Canada's situation proves you can't do both, and lives are lost as a result. Give us universal care, and we will all be covered, but all that coverage had better be cost-effective. What care is good enough, and what is too expensive? What is your life worth? Don't delude yourself. Someone will be deciding, for you, sooner or later.
Cutting expensive care seems very sensible until you or a loved one is the one in need.
Those who speak of savings from preventive care have not studied the history of the roll-out ofuniversal care around the world. It doesn't happen. Very soon, rationing care will be part the equation, with decisions made by distant committees that examine not the patient, but the bottom line. I left my practice in Canada because there was always a powerful, if unseen, third person in the consultation room, the government, telling me what I could and could not order.
True, insurance companies are already doing this, but they are regulated and must extend the bestpossible standard of care. To whom will you appeal when the government health care bureaucracy says no? I like the present checks and balances that insurance competition and government oversight offer.
There are two other concerns that are close to the heart of anyone like me with an "incurable"disorder looking for a better future yet to be invented.
The United States spends an estimated 5.6 percent of its total health expenditures on biomedicalresearch, more than any other country, and $2 out of every $3 is put up by industry. With the government running the show, this, too, surely would decrease as the profit incentive is curtailed.
As big pharmaceutical companies, admittedly not always the best citizens, become the scapegoatsfor high cost and increasingly are squeezed, who will make good on their contributions to research and development? Without more research and development, most people with my cancer and many with other diseases remain incurable.
Then there is the brain drain - what some have called the "Gretzky effect" - in which the best andbrightest from Canada and elsewhere head to the United States.
"Of eight Canadian babies who were born around the same time I was and who went on to winNobel Prizes, seven of them did their prize-winning work in the U.S." says Richard Taylor, an Alberta-born physicist and Nobel laureate at California's Stanford University. Would this continue when our research budgets are cut?
My main point remains that you don't get something for nothing. More coverage for some meansless for others. Less profit means less research. That is an inalienable but often forgotten part of the health care debate that matters to me as a doctor and as a patient on a life-and-death basis.
As the United States moves toward the clear benefits of universal health care, I need to point outthe enormous risks.
Dr. Brian Koffman is a family doctor with St. Jude Heritage Medical Group in Diamond Bar,Calif.
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Mea culpa: The Gritty and Confusing Details of the ACIP Recommendations for the Shingles Vaccine
Seems I missed some of the critical details of the "change."
Not nearly the picture I had portrayed in my last post, so I must share my mistake and thank Dan for elucidating my error.
For those, happily not worried about the minutiae of T cells and B cells and vaccine responses, you might read the following as a lesson I learned in the dangers of wishful thinking and not checking deeply into the facts.
As both a reporter of fact and as a scientist, I must quickly and fully admit and publish my errata.
Others might find a cautionary tale of the arrogance of big government, the dangers of decisions made by bureaucratic committees with their deft ability to impose their will and yet accept no responsibility for the consequences
Here are the details as explained by my friend, Dan who tells the story much better than I could.
Frankly, I am not enthused about the next step.
I suspect that you’re playing catch-up from your Middle East sojourn (a little rest, and the world is full of work). In that haste, you may have done a quick misread of the CDC-ACIP changes in re the shingles vaccine.
It is my understanding, of which I’m awaiting CDC – ACIP written confirmation, that the CDC – ACIP actually “cleaned-up” their integration between documents. Id est, the broader “General Recommendations on Immunization - Recommendations of the Advisory Committee on Immunization Practices (ACIP) as dated December 1, 2006 / 55(RR15);1-48” with the specific “Shingles Vaccine Information Statement” of 09/11/06 as revised 10/06/09, to better dovetail the latter with the broader 2006 white paper.
The broader “General Recommendations on Immunization …..” of Dec. 2006has not been modified. The sectional title therein “Vaccination with Live-Attenuated Vaccines” still retains the language “Patients with leukemia, lymphoma, or other malignancies whose disease is in remission and whose chemotherapy has been terminated for at least 3 months can receive live-virus vaccines.” And therefore remains as dated December 1, 2006.
It is my understanding, as of my phone conversation with them today, that the CDC – ACIP has not been provided properly substantiated, valid, reliable, quantitative data for them to change their position. I had a “feeling” of suspecting something like this and is the reason I included in my email to Ron G. the Errata: Vol. 55, No. RR-15 to the still otherwise unmodified General Recommendations on Immunization, et cetera. I’m of the belief that the cornucopia nodes of such lacking data may repose in wait at places like MDACC, The Mayo Clinic, LIJ, NYP-WCMC, Dr. Hamblin’s olde haunts in the UK, in Cologne & Essen in Germany, Barcelona in Spain, Turin and Rome in Italy, et al.
On the other side of the argument, I sense the CDC – ACIP may have derived their position based on manifestations of leukemia other than that of CLL, e.g. childhood leukemia. I intend to follow-up on this aspect, should I receive back an email response. Should this prove to be the case, the extension of their argument as applicable to CLL may be fallacious. I sense the resolution lies with the T cells CD4 cut-off threshold limit, which if I understand correctly ties into Dr. Hamblin's 10/29/09 ACOR CLL posting (see below).
I have provided herewith a recap of past email correspondences and postings, as well as my email today to Dr. Kroger of the CDC – ACIP.
In paraphrase, the issue is the ACIP stance that the herpes zoster vaccine is safe for CLLers if we have been in remission for only 3 months.
2008, Nov. 24: Your post brings the foregoing issue to the attention of ACOR CLL Listserv members, asking that we bring the ACIP position to our individual doctors (hems/oncs), beseeching each hem/onc that disagrees to write the ACIP accordingly.
2008, Nov. 28: I had emailed you “off-list” to bring your attention to the CDC-ACIP’s “09/11/2006 Shingles Vaccine Information Statement”, noting among other things that it expressly states “- a history of cancer affecting the bone marrow or lymphatic system, such as leukemia or lymphoma”, and that since it’s the more detailed document that it could be argued as controlling. I had also suggested considering confronting them with potential liability issues, i.e., “fear of the law”, in addition to possibly doing one letter signed by numerous CLL mavens. (You did email me back, advising considering & would advise after up coming holidays).
2008, Dec. 17: Dr. Byrd had requested posting within the CLL ACOR Listserv (highlighting & underlining added) “….the varicella zoster virus vaccine which should not be given toCLL patients due to their immunocompromised state. Some practiceners are mistakenly giving this and it places CLL patients at risk. ….” (s/b “practitioners”).
2008, Dec. – 2009, Oct. – since your 11/28/08 posting asked others for action, it’s not surprising the issue waned with time (a phenomena that can be thrown into the baskets of other axioms, like, “I’m from the government and I’m here to help.”). Needless to say, the topic issue similarly comes and goes on the daily CLLSLL Yahoo digests, quite often back and forth on treatments, which Dr. Furman addresses.
2009, Oct. 29: In response to the topic issue again having risen, Dr. Hamblin notes within an ACOR Listserv post (highlighting & underlining added): “……virtually everybody still carries the virus in their nerve cells. The reason that it doesn't reactivate is that we have sufficient specific T cells to control it ….. The ban on shingles vaccine for CLL patients is based on theory not evidence, but it is the safer course. If the vaccine is to be banned then it makes sense to avoid contact with anyone excreting the virus. ….”
2010, Feb. – Mar.: Like the story of Lazarus, the topic of the shingles vaccine for those diagnosed with CLL rises again. On 03/03/10, Ron Goldsmith, ironically in “Phoenix”, AZ, succinctly summarizes the history of the topic, as well as providing the link to Dr. Hamblin’s 11/22/08 clearly written, easily read write-up of the topic’s issue. Noting the “bottom line: Shingles vaccine is not safe for CLL patients.”
2010, Mar. 06: This writer emailed Ron G. a brief of off-lists emails with Brian K. back in late Nov. 2008, providing an updated comparison between “09/11/2006 Shingles Vaccine Information Statement” and 10/06/09 revision. In sum the 2006 version states those with “a history of cancer affecting the bone marrow …” should not get the shingles vaccine, whereas the wording “a history” has been deleted in the Oct. ’09 revision. Moreso, whereas the Oct. 2009 revision additionally has the word “current”, i.e., should not get the shingles vaccine who “has a weakened immune system because of current:”. This writer had also included, i.a., Errata: Vol. 55, No. RR-15 to the still unmodified General Recommendations on Immunization - Recommendations of the Advisory Committee on Immunization Practices (ACIP) as dated December 1, 2006 / 55(RR15);1-48, because this writer found the wording “…can receive varicella and measles vaccine if CD4+ lymphocyte count is >15% …” of interest as possibly worthy for exploring in re CLL. Copied:firstname.lastname@example.org, terjoha, email@example.com.
2010, Mar. 07: Writer received off-list email from Dr. Furman: “It is also very, very important to emphasize that the Shingles vaccine has not been demonstrated to be effective in people with weakened immune systems.Thus, there is no know benefit and the potential for harm, making the risk: benefit ratio not at all favorable.”
2010, Mar. 07: Writer emails Dr. Furman: “….I find it incredulous that the CDC, APIC, et al can make such "no liability recommendations" without valid & reliable supportive documentation in place. There should be in place, readily available, valid and reliable quantifiable and or quantified variables upon which they based their risk evaluation and derived decision(s) to recommend. In absence of this, the first thing that comes to mind is litigation, which is one of the points I suggested to Brian as confronting them with. In reviewing their most recent updates, I walked away with an impression of them being obstinate, pompous, and arrogant. Needless to say, the ACIP has ample exculpatory language, to wit, their usage of such words as "suggestions" and "recommendations"; furthermore, after their rather well organized, rather detailed, flowing spiel, they do effectively shift the end point onto the practitioner, e.g., you, as to deciding what tests, results interpretation & recommendation of decision path to follow. …”
2010, Mar. 10: Brian emails writer: “…think this is a significant improvement in the text that better reflects the current state of knowledge about the safety of the vaccine in patients like me. …”
2010 Mar. 12: To resolve my dissonance, this writer called and spoke with CDC – ACIP Andrew Kroger, M.D. down in GA and subsequently emailed the following:
Start 03/12/10 email to Andrew Kroger:
“Andrew, as per our phone conversation today.
In re above, two changes of note:
Æ Sept. ’06 version states “a history of cancer affecting the bone marrow …”, while “a history” has been deleted in Oct. ‘09
Æ Oct. ’09 version now states “has a weakened immune system because of current:”, note the word “current” did not appear in the Sept. ’06 version.
So, l et me just add this note from Dr Furman to bookend this story.
I really think the important piece of information is that there are no efficacy data for the vaccine in CLL patients and I suspect the benefit is likely extremely small given the immunodeficient state of untreated CLL and the even more immunodeficient state after treatment. With the proven benefit, any risk becomes not worthwhile. I also see acyclovir and its derivatives as being so effective.
So that's the story, so far. I will keep you posted of the byzantine changes, but I expect no breakthroughs.
Don't jump to conclusions, happy or sad.
Check all the facts yourself.
Don't expect big anything (government, pharma etc.) to be looking out for you.
A Small but Positive Change in recommendations about the Zoster Vaccine
In November of 2008, I helped launch a campaign that eventually involved Drs. Hamblin and Furman and others in changing the recommendations of theAdvisory Committee on Immunization Practices (ACIP) about who should not get the live Zoster (shingles) vaccine.
Their recommndations used to read (in part):
• Persons with leukemia, lymphomas, or other malignant neoplasms affecting the bone marrow or lymphatic system. However, patients whose leukemia is in remission and who have not received chemotherapy (e.g., alkylating drugs or antimetabolites) or radiation for at least 3 months can receive zoster vaccine.
Now they read (in part):
Who should NOT get the shingles vaccine? NEW MAY 2009
Some people should not get the shingles vaccine:
People with a weakened immune system as a result of leukemia, lymphoma, or any other blood or bone cancer.
People being treated with drugs that affect the immune system, including high-dose steroids.
Please notice that there is no longer the three months clean and you are cleared for vaccination. This is a subtle, but important change that better reflects the present state of knowledge about live attenuated vaccine safety for people like me.
The new recommendations happened quietly, so quietly that I missed the change, but I think the CLL community can feel proud about the role we played in nudging the infectious disease and hematology communities out of their silos and closer together in their thinking about how to best serve some of their most vulnerable patients.
Thanks to all those who helped, especially Dr. Hamblin.
My wife gave me her nasty cold, so while camels or the lack of garbage collection in Cairo (that's right folk, the 22,000,0000 citizens of Cairo through their trash into the street or dump it in the Nile) or the exotic and cooked vegetarian diet of Israel (not my usual raw vegan organic faire) didn't slow me down, this mean head cold isn't letting go of me and is dragging me down.
I am using my dwindled energies to write an op-ed piece that I hope will be published about healthcare. You will be the first to know.
To those of you worried that my silence on my blog might mean that I've been ill, it is true that I have been under the weather, but not that far under.
A family doc and husband of 1 and father of 4 and grandfather of 3 who loves his family and his work. I live with no TV and no microwave, but wouldn't last a minute without friends, art, music, books and the beach. Hockey, good jokes and exotic travel are pretty important too. Writing, Talmud and Zen give meaning to my life. My diet is organic vegan, often raw. I hope the blog makes the load lighter and the path both safer and more fun for those who read it or are going to similar places. I want to help. I crave your comments. If you are new to the blog, check out the portrait my son Will painted (it is the first post), and my very first text post.