"Shine a light" The Rolling Stones

And I'm wonderin' what it is I should do,

It's so hard to keep this smile from my face,

Losin' control, yeah I'm all over the place.

Clowns to the left of me,

Jokers to the right,

Here I am Stuck in the middle with you

Rafferty/Egan

It is not that I think of my doctors as clowns and jokers. It is just that we are all working in a herky jerky dark comedy as we roughly pull the biological levers of a graceful and delicate system that we are trying to force to obey our will. 

I will soon be making some major decisions, with less than perfect knowledge. So I have decided to get the best expert advice I can and read up on the latest thinking and most recent studies that apply to my circumstances. Be prepared. Shine a light.

I am off to ASH (American Society of Hematology) conference in San Francisco to meet the gurus and read the papers. As a bonus I get to stay with my daughter and son-in-law in Berkeley.

And then I will consult Dr. Kipps at UCSD and my local doctor, Sanjay Sharma before the year is out.

And probably a quick trip to the east coast to get third and fourth opinions from Kanti Rai and Ken Miller in January.

I will make several attempts to predict the best of all possible futures.

At least that's the plan for now. It may change after my bone marrow biopsy and CT scan next Monday. There is much at stake. As a friend said, I hear the drumroll. Show time! Let us hope there's no rimshot this go around.  I already have had my share of my cosmic humor: being too healthy with too robust a bone marrow and immune system to allow my graft to take hold. What hubris.

What does sadden me is how head long and deeply I have had to dive back into the murky waters of CLL and transplant medicine just when I thought I had reached the shore and was lazing on the beach in the sun.

As I do my research, I hope what I will find makes it hard to keep my smile from my face.  I will smile come what may, but it wouldn't it be great if it came easy.

"You don't know what you got til it's gone" Joni Mitchell

PATRICK O'SULLIVAN 

LA KINGS FORWARD

A VERY GOOD HOCKEY PLAYER

You go with what you got. For POS pictured above, it's soft hands, a knack for scoring, and a winsome smile

For me it's my cancer free status, my many cards left to play, and of course, my winsome smile.

So what if you are missing a few teeth or a few donor cells. Those things can be replaced. To win, sometimes you need to put it all on the line.

"If I ruled the world" Leslie Bricusse and Cyril Arnadel

You say you want a revolution.

The Beatles

This is a followup to my post of November 11, about the herpes zoster vaccine and would be of interest to those with CLL and those who are frustrated with trying to get the government to change.

It started as I was reviewing a paper on herpes zoster for publication for medical education.  I came across this frightening reference from the CDC, specifically the Advisory Committee on Immunization Practices (ACIP).

"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.”

We all know patients with CLL should NEVER  receive a live vaccine and herpes zoster vaccine is a live attenuated virus.

Here's the letter I wrote:

Subject: Concerns about the safety of the herpes zoster vaccine in patients with chronic lymphocytic leukemia

Dear Dr....,

As a both a practicing physician and as a patient with a history of CLL (Chronic Lymphocytic Leukemia)  I am writing you in your capacity as a member of the Advisory Committee on Immunization Practices.  I am writing to both urgently express my concerns and to respectfully ask for your help with the published recommendations of the ACIP as they relate to the safety of the herpes zoster vaccine for patents with CLL in remission.

In what appears to be clarification of the package insert, the section on Immunocompromised Persons under the heading Contradictions in the current Prevention of herpes zoster. Recommendations of the Advisory Committee on Immunization Practices (ACIP) contains the following:

           • 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.

The second sentence is contrary to the standard of practice I have encountered in the hematology-oncology community and what I have found in the CLL literature. Those who treat CLL patients recognize that even in a complete remission with no minimal residual disease, their patients remain immunodeficient. They generally advise these patients to avoid live vaccines at any time in the course of their disease.

Certainly a three-month remission would not qualify such patients as sufficiently immunocompetent to receive a live vaccine.

The following is an example:

"[P]atients with CLL should be regarded as immunodeficient as far as vaccination with live attenuated organisms is concerned and these should be avoided."

Hamblin, D. and Hamblin, T. J. The immunodeficiency of chronic lymphocytic leukaemia British Medical Bulletin 2008; 87: 49–62 A.

The following advice was given to patients by two recognized world authorities on CLL:

" [P]atients with CLL should never have live vaccines." Dr T. J.Hamblin, Professor of Immunohaematology Southampton 1986 to present. Honorary Consultant Haematologist Kings College Hospital, London, 2004- present.

"CLL patients should not get the shingles vaccine as it is a live virus." Dr. Richard Furman, assistant professor, Division of Hematology and Oncology, Weill Medical College at Cornell University, New York, NY.

The decision to offer the herpes zoster vaccine is often made by a primary care provider who would not question the guidelines of ACIP.

For the safety of those with patients with CLL in whom any live vaccination poses a risk, I respectfully ask you that you urgently revisit the latest guideline. Please consider enlisting the aid of treating hematologists-oncologists specializing in CLL in drafting the revision.

I am happy to offer my help in any way I can to facilitate the process.

Thank you

Sincerely

Brian Koffman MDCM FCFP, DAAFP, MS Ed

Here's the considered and thoughtful, but unbudging response:

Subject: FW: Concerns about the safety of the herpes zoster vaccine in patients with chronic lymphocytic leukemia

Dear Dr. Koffman,

Thank you very much for your sharing your concerns regarding recommendations by the Advisory Committee for Immunization Practices (ACIP) that the vaccine for herpes zoster (HZV) be offered to persons 60 and older with CLL in remission. This is a very reasonable question, and I am eager to respond.

In way of background, the ACIP made its decision with input from experts who considered issues of safety as well as efficacy, feasibility and of cost-effectiveness. Needless to say, input was obtained from physicians with expertise in managing patients with cancer and other causes of immunocompromise. The ACIP strives to be very deliberate, and does not apply a one-size-fits-all approach regarding vaccine recommendations or patients.

Many vaccine preventable diseases (e.g., measles, varicella) are severe and even life threatening in immunocompromised persons, and decisions regarding vaccination with live vaccines therefore involve careful consideration of risks and benefits. In certain instances, live vaccines are recommended for defined categories of immunocompromised persons at high risk of these diseases. This same calculation is appropriate for HZV since HZ, too, poses an extremely high burden of disease among immunocompromised persons. In fact, depending on the specific condition, the incidence of HZ is increased orders of magnitude as compared to unaffected age-matched persons, and the spectrum of illness from HZ is much more severe as well, resulting at times in dissemination, encephalitis, severe ocular involvement, or death.

A number of key considerations distinguish HZV from other live vaccines

* Virtually all adults aged 60 and over are at risk of HZ (i.e., are infected with latent varicella zoster virus, or VZV). In contrast to other live vaccines, HZV does not protect by preventing infection but by preventing reactivation of this latent infection, which is much more likely in immunocompromised persons. A strategy of vaccinating household contacts would not protect a person with CLL (in contrast, say, to vaccinating household contacts with varicella vaccine to protect a child with leukemia).

* People receiving HZV have preexisting immunity to VZV. While second episodes of chickenpox occasionally occur, second VZV infections remain uncommon even among the most profoundly immunocompromised persons, and those rare episodes that do occur are not severe. Immunity to VZV in such patients appears to be adequate to protect against disseminated infection from the wild-type, natural VZV virus, and the risk of adverse effects from live-attenuated VZV contained in HZV should be correspondingly lower.

* In fact, there is empiric evidence to support the safety of HZV in immunocompromised persons. In early trials, the live-attenuated VZV used in varicella vaccine as well as HZV was administered to hundreds of profoundly immunocompromised children with leukemia in remission and *without* preexisting immunity to VZV, and the vaccine was well tolerated. These children tolerated subsequent second doses of the vaccine even better. Live attenuated VZV has since been safely and effectively used in many more children with other immunocompromising conditions such as transplant recipients and HIV infection. Live attenuated VZV is now recommended in HIV-infected persons without prior immunity to VZV. Finally, live attenuated VZV has also been used in HIV-infected children with prior varicella infection and immunity. As would be expected, the children tolerated the vaccination very well.

* General guidance on use of live attenuated vaccines by persons with leukemia has been evaluated by ACIP and published in their General Recommendations on Immunization (http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5515a1.htm ) published Dec. 2006. The document states that "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."

Given the potential severe, life threatening HZ in persons with CLL in remission, and the considerations regarding the safety of this vaccine, the ACIP recommends that the vaccine should be used in such circumstances.

Thanks again for contacting us. I wish you a complete and speedy cure of your illness. Please feel free to share this correspondence with your treating physician, and do feel free to contact me if you wish to discuss this further (I can be reached at the number below).

Best wishes,

Dr...

I was unhappy with the result and forward this correspondence and others between myself and various doctors at the CDC to the well respected world CLL expert, Dr . Terry Hamblin.

Please check out his detailed, lucid and balanced approach on his wonderful post in his blog. http://mutated-unmuated.blogspot.com  If you have CLL, his blog is required reading. You can tell I am a big fan of Dr Hamblin and what he does for the CLL community. 

After you have read Dr Hamblin's post, please consider discussing this with your own oncologist and maybe ask them to write the CDC's ACIP if they are as concerned as I remain.

Maybe if dozens of oncologists write, they may reconsider. They have been polite, prompt, responsive and detailed, but they remain unconvinced. 

I think we need to be equally as polite and detailed, but we also need persistence and greater numbers.

I have not included names but if you go to the links you can find to whom your oncologist should write.  If you do decide to follow through on this, I want you to have done your homework and due diligence. You might even want to draft a short note to help get your doctor started. It could be very simple. Have the links to the ACIP printed out. Have the addresses. Most docs are too busy, but if you make it easy for them, they are more likely to help.

I have no doubt the doctors at the ACIP are concerned, but their background is infectious disease and public health, not heme-onc. 

Let's help them help us.

"I gotta get a message to you" The BeeGees

I want someone to talk to me like Moses

Randi McMatthew

It is hard enough when I have all the facts to make a decision. Should I play the odds and hope that I get lucky? Will I be part of the 41% of those who despite rejecting their graft, go on to have durable remissions? Some theorize that the same kick ass immunity that is giving the boot to my donor, may also be pushing my misanthropic clone out of Dodge. The remission odds are even better if the cancer is chemo sensitive, which mine clearly was.

Tough decisions. 

Dennis Prager teaches that in order to be clear, you  first need to acknowledge what you want to be true.  Then look coldly at the evidence that confirms or denies what you so desire to be the reality of the situation. Admit your prejudice, and be so very cautious not to discount what you find that is counter to it.

I've said it  before. I so wish that an organic vegan diet and gobs of green tea would cure leukemia, but the facts say otherwise. Might help for sure. Cure it?  No way.

But what about when the facts aren't there? What if I need to decide when there are gaps in my knowledge big enough to hide a rock star's ego?  Gaps, not only about my own status, such as did I get my remission from the chemo or the donor's T cells doing their job of search and destroy, but gaps in the state of the knowledge out there. 

Many of the problems I want answers to have none, at least yet. The medical literature doesn't talk about the success of DLI salvage when your donor's monos and granulocytes are zero, but the donor T cells remain relatively high. Someone knows from their experience or from their deeper understanding of the basic science. I suspect the DLI is hopeless, based on my incomplete understanding of the biology, but I want the word from on high.

The medical journals I read often have only a few cases that are similar to my circumstances, providing very thin cover for venturing into a jungle of  known and unknown dangers.

So I will start reaching out to all the experts I can. Fly to the east coast and see Dr. Rai and Dr. Miller. Email and phone others.

Maybe go to the American Society of Hematology meeting http://www.hematology.org/meetings/2007/index.cfm in San Francisco in 2 weeks.

I am looking  for all the help I can get.

I am also writing up a storm and hope some of you including "CLL spouse" will email at bkoffmanMD@gmail.com if you can help with my book in any way. It would be much appreciated.

"All you need is love" The Beatles

Let this be a sermon
I mean everything I've said
Baby, I'm determined
And I'd rather see you dead

The Beatles

Two very different perspectives from the boys from Liverpool.

Below are two very different letters. The first is from a very special person and friend who has made peace with her CLL. I envy her compassion and love and I bless her for reminding me of their power to heal. It is a healthy and holy way to live, I have no doubt. I am  so lucky to have her in my life.

My testosterone driven, take no prisoners response follows. Works for me.

Hopefully there are some shining gems in these two different takes on dealing with life's ultimate issue that can illuminate your our path. Read and consider. 

Love your enemies pray for those who despitefully use you.  Jesus

Bless your enemy for he makes you strong.  Unknown

Hate cannot drive out hate only love can.  Martin Luther King

Dearest Brian,

I think about you almost daily and PC and Chaya also.  I read your blog.  I always have things I want to say to you, but then I hesitate for everyone's journey is so their own.

Sometimes I see you striving so hard, wanting to fight so hard, and I want to reach out and touch you and tell you to calm down, take a deep breath and relax.  I want to tell you, you do not need to fight so hard.  I want to tell you that every single moment is perfect, even the bad ones.  Maybe the bad ones are the most perfect.

All the moments are simply there for us to experience life and to grow our souls.  All the moments are just lessons to be lived.  Choices to be made.

With the CLL.  Jesus said to love our enemies.  The Beatles would agree:

Love, love, love, love, love, love, love, love, love.
There's nothing you can do that can't be done.
Nothing you can sing that can't be sung.
Nothing you can say but you can learn how to play the game
It's easy.
There's nothing you can make that can't be made.
No one you can save that can't be saved.
Nothing you can do but you can learn how to be in time
It's easy.
All you need is love, all you need is love,
All you need is love, love, love is all you need.
Love, love, love, love, love, love, love, love, love.
All you need is love, all you need is love,
All you need is love, love, love is all you need.
There's nothing you can know that isn't known.
Nothing you can see that isn't shown.
Nowhere you can be that isn't where you're meant to be.
It's easy.
All you need is love, all you need is love,
All you need is love, love, love is all you need.
All you need is love (all together now)
All you need is love (everybody)
All you need is love, love, love is all you need.

What if instead of doing battle with the CLL you made friends with it?  What if you even learned to love it?  I think I have done that.  I talk to it.  First of all I tell it I love it, that I do not want to fight with it, I want to forgive it.  I tell it I forgive it, and I feel a release of it.  I tell it that I know it does not want to hurt me.  Like us, it is cells that have lost their way.  The cells are sick and they do not know how to die anymore like they used to.

They WANT to die!  They want to be normal.  They don't know how to get well.  They DO NOT WANT TO HURT US.  THEY LOVE US AND THEY WANT US TO BE WELL AND IF THEY KNEW HOW TO DIE THEY WOULD.  THEY DO NOT WANT TO CROWD OUT OUR BONE MARROW OR MAKE OUT SPLEEN BIG OR MAKE OUR PLATELETS ALL CRAZY.  They are sick and they do not know how to get better.

If we love them, forgive them, then we stop being at war with our own bodies.  We stop hating our own cells.  We stop having negative energy in us.

If we forgive and love the CLL and I think it responds to love and forgiveness.  Love is more powerful than hate and war, Brian.

When we are filled with love even for our own enemies we are more at peace and our system can be more powerful to get well.

What we resist persists.  What we resist persists.  What we resist persists.  We give our energy to it by fighting and resisting it and it grows.

If we believe the CLL cells love us and do not want to hurt us and want to figure out how to die like they are supposed to, then we can work as a team to get well.  We are a team with the CLL and its sick little cancer cells.  We all are working together to get well.  We are not divided, divided we fall united we stand.  Our bodies are a united force trying to learn how to get well.

I cheer my CLL cells on to find a way to die.  They welcome all the help I can give them to figure out how to die and be normal.  They welcome chemo if it will help me because they LOVE me and they do not want to hurt me.  They welcome healthy food I give them and rest and water and love.  They welcome all the things I do because they so love me and they do not want to hurt me.

They feel awful that they can't die.  They love me so much.  We are a team trying to live, trying to get better, trying to be well.

Love is all there is, Brian.

Love is all there is.

Even with CLL.

A very dear friend

Here is my response.

Sweet friend,

You know just where I struggle and where I question.
I too sauntered down the path your describe, saw the cancer as a part of me, talked with it, reasoned with it, held its hands and offered it a number of exit strategies. Like Gesalt therapy. Treated with a gentle loving compassion.
I talked with  the author Tom Robbins, who had a character in Half Asleep in Frog Pajamas directly feed his rectal cancer broccoli in an attempt to  keep it from spreading.  I asked him about trying to get along with my leukemia.
Tom said ask for forgiveness. From everyone. I have and I do, though I am sure I fall woefully short.
So please forgive me for what I say next.
My cancer continued unabated and unappeased. Until I struck back.
If all that is necessary for the triumph of evil is for good people to do nothing,  how much more so for a renegade monoclonal monster so blind in its own hunger it fails to notice that its malicious growth is destroying not only its housemates, but  also the very home in which it lives.
It is playing for keeps, but I am tougher and smarter and way more loving, and I will use all my strengths to win this war.
MLK is right about hate and love, but we in Socal know you sometimes need to fight fire with fire.
Each one of us is on a different path. I am sure yours is right for you and will continue to be a successful partnership. But as you know too well, sometime you must leave an abusive relationship.
For me, I am calm in my vigilance, empowered by my struggles. And although I do despair at times, I try to remember that ever moment is perfect, especially the bad ones. That is why I want more life, more moments
You are a good friend. I treasure your letters.
Stay in touch Stay strong.  Feel your love
Your friend and fellow traveler,

Brian

"When the world is running down, you make the best of what's still around" The Police

An' here I sit so patiently

Waiting to find out what price

You have to pay to get out of

Going through all these things twice.

Bob Dylan

I am still cancer free, but it looks like I may be rejecting my graft. My critical T cells fell to just over 50% donor down from 64% only 6 weeks ago, and my monocytes and granulocytes made in my marrow are all mine, 100%  recipient. No donors cells to be found. Looks like I needed to be hit with a bigger immunosuppressive hammer a the time of the graft. Looks like my own marrow and immune system were just too robust and beat back my invading donor. I was just too darn healthy at the time of transplant. I had this foreboding in hospital. It explains why I have had such an easy time of it and no (GVH) graft versus host disease.

This is bad news, no doubt, but the same blood test that showed the falling chimerism, also showed no CLL. So first I repeat the CT scan, repeat the bone marrow biopsy (BMB) and repeat all the lab test in 2 weeks and than I begin down a new path.

A donor leucocyte infusion (DLI) is possible, but not likely. Chemo is much more likely soon, and at sometime in the future almost for sure, a redo transplant, this time with a bigger chemo hammer. Could be real soon or years away. It could be never.

My leukemia sure took a dive with only 1 course of chemotherapy as it looks now like my remission was from the conditioning therapy (a common cocktail called FCR by its fans for its famed mix of the potent and poisonous fludarabine, cytoxan, and rituxan) and not  the much desired GVL (graft versus leukemia). Not really certain that is true. Not really certain of anything at this point. If it was the chemo, then it must be very sensitive which bodes well. And I feel well. And I look marvelous. Just ask my wife. All that is good.

I am off my anti-rejection drugs (tacrolimus and sirolimus) and my prophylactic antibiotics as of today. That may boost my donor T cells or maybe knock them out faster. Who knows?

I would say I won round one by a wide margin, but this will be a long fight. I was hoping for an early knock out, but I am dealing with a patient and wily, but weakened opponent. I remain certain of my ultimate victory. I'd be lying if I said this was a good day, but you would be mistaken if you thought I was going to be down for long. 

"Too much information running through my brain" The Police

Engraftment results, the Kings scoring drought, the local fires and smoke (we are fine), student jazz from McGill, analog versus digital music, Hollyweird CME conference, letters of references, appointments with editors and publishers, innovative medical devices, and critical developments on the faulty guidelines of the ACIP (CDC's advisory committee on immunization practice) are all screaming for my immediate attention.

I only have time to thank JC so so much for the great seats to Ducks-Kings game. And it was a surprise treat to see the W family. I've been to two games this year and have not seen the Kings score one goal. How pathetic is that!

More soon, on all of these. Tomorrow is yet another big day. Honestly, I am expecting stability or better, but hoping for a significant uptick in donor cells when I learn my engraftment results.

"Maybe a great magnet pulls All souls towards truth Or maybe it is life itself That feed wisdom to its youth Constant Craving has Always Been" KD Lang

"Hallelujah"

Now I've heard there was a secret chord
That David played, and it pleased the Lord
But you don't really care for music, do you?
It goes like this
The fourth, the fifth
The minor fall, the major lift
The baffled king composing Hallelujah
Hallelujah
Hallelujah
Hallelujah
Hallelujah

Leonard Cohen

If music is capable of healing my body and soul, then maybe KD Lang singing Leonard Cohen's Hallelujah is my best shot at redemption. 

Check out http://www.youtube.com/watch?v=FTv9m8c6hnw

It's a digital approximation of the hair raising soul stirring intensity of following KD live on her sonic journey.

The setting was a small beautifully restored 1928 theater in North Park, San Diego, a busy hub of alternative lifestyle, where KD was very much at home. A perfect venue, with a wonderfully inventive organic vegetarian restaurant next door call SPREAD. I told you it was center for those who were once on the fringes.

Even sitting masked in the audience (lots of coughers) I was taken away. GONE.

It is great to be alive. Great to hear live music, especially a hymn from north of the 49th parallel.

Please take note of how calm I am this week as I wait for my engraftment results. The paucity of emails or faxes hints that my numbers aren't perfect, but I won't try to read the tea leaves. I can hold on until Monday. Better that I continue to luxuriate in the bath of Lenny's and KD's collaborative curative oeuvre.

There's a blaze of light

In every word

It doesn't matter which you heard

The holy or the broken Hallelujah

Hallelujah, Hallelujah

Hallelujah, Hallelujah

I did my best, it wasn't much

I couldn't feel, so I tried to touch
I've told the truth, I didn't come to fool you
And even though
It all went wrong
I'll stand before the Lord of Song
With nothing on my tongue but Hallelujah

Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah, Hallelujah
Hallelujah

I am off to Hollyweird tonight for a Primary Care Education Network (PCEN) medical conference that I might have lectured at last year. I need my CME (continuing medical education) credits before year's end and I am not keen on flying just yet. So it's local fun and learning for now.

"While the dealers they get together And they decide who gets the breaks And who's going to be in the gallery" Dire Straits

I live in a box of paints

I am frightened by the devil

And I'm drawn to those ones who ain't afraid

Joni Mitchell

Thanks to everyone who joined us at Avanti Cafe for the after 100 day party after party and my son, Ben's art opening.

Ben's works are coming down next Saturday, so you still have a week to enjoy great vegetarian food and see the show. Let me know if you are planning a visit and I may meet you there.

If you did purchase one of the paintings or stencils, please contact Patty or me by phone or email or even post a message here. There is no urgency, but we want to help arrange delivery or pick up.

Art may not be necessary for life, but it can hold up a mirror that lets us see it more clearly.

" Shower the people you love with love" James Taylor

My closest friends will be most happy to know that today I took a shower for the first time since June.

With nothing on. Nude. Naked. In the buff. In my birthday suit.

With the PICC line out, I didn't need to wear the waterproof sleeve on my left biceps. Think giant thick opaque condom with an opening at both ends. I guess that would make a pretty lousy condom. Attached is a bulb identical to that used to pump up a blood pressure cuff, but it does the opposite. With its valve reversed, each squeeze deflates or sucks the air out of the sleeve, so it creates a partial vacuum and tightens against my arm. It has been marvelous at keeping my PICC line dry and germ free since June, but it did prevent me from just jumping into the shower and scrubbing several inches of the covered limb. Now it too is history.

Life is getting back to normal. 

PS The portrait over my head is of the late great cat, Scooter.

"Good day, Sunshine" The Beatles

I woke up this morning to a fax with the results of the flow cytometry studies and immunophenotyping of my blood test from Monday.

The fact of the fax was in itself good news. Doctors, especially oncologists, don't tend to deliver bad news by fax.  A careful reading confirmed my hopeful suspicions. 

NO CANCER

Because my lymphocyte count is low and only 1% on those are B cells (CLL is a B cell leukemia), there were not many B cells to check out. Nevertheless, those B cells that were examined were polyclonal or normal.  No clonal populations were found.

So as of day 132 post transplant, all is well in my blood stream. No cancer hiding out.

Engraftment studies may be in my hands later this week or next week.

I am most happy.

"I've had enough of reading things by neurotic, psychotic,pig headed politicians" John Lennon

"All I want is the truth

Just give some me some truth"

John Lennon

Below is an editied version of the email I sent to Dr. Forman when I mentioned to him my concern about the ACIP recommendation concerning the zoster vaccine, during my office visit yesterday.

If you are a CLL patient, be prepared to be astonished by the advice your government is giving to the medical community.

Dear Dr. Forman,

In the process of reviewing a paper for publication of herpes zoster, I came across this possibly dangerous statement in italics below from "The Prevention of herpes zoster. Recommendations of the Advisory Committee on Immunization Practices (ACIP)" (http://www.guideline.gov/summary/summary.aspx?doc_id=12633&nbr=6541&ss=6&xl=999). You may also read the full recommendations at the web address above.

Immunocompromised Persons

Zoster vaccine should not be administered to persons with primary or acquired immunodeficiency including:

• 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.

As we know, patients with CLL should never have live vaccines. I hope a letter to the authors from a PCP would make an impact. I will do what I can to have the language changed in regards to CLL.  I have started a search for source material on the safety of live vaccines in CLL. I would appreciate your advice and support and any reference material in this effort.

The decision about the offering the HZ vaccine is often made by a primary care provider who would not question the guidelines of ACIP who work under the umbrella of the CDC. Indeed the paper I am reviewing has a case studies that recommends HZ vaccine in a patient with CLL in remission.  If I didn't have personal experience with CLL,  I would not have questioned the recommendation.

Thank you so much,

Sincerely

Your patient and colleague,

Brian Koffman MDCM FCFP, DAAFP, MS Ed

So now it looks like I am not fighting city hall, but the feds. First, I will try to align all my allies in the heme/onc community, and get appropriate references to back up my battle. This guideline must be changed.

If you are not a CLL patient you might be wondering why this has so upset me. A live vaccine might be very very dangerous for anyone with CLL, at any stage of disease. CLL impairs one's immunity, even when in deep remission and a live vaccine can cause havoc when the defences are down.

Let me share this with you.

“On the other hand, patients with CLL should be regarded as immunodeficient as far as vaccination with live attenuated organisms is concerned and these should be avoided.”

Hamblin, D. and Hamblin, T. J. The immunodeficiency of chronic lymphocytic leukaemia British Medical Bulletin 2008; 87: 49–62 A.

Below are quotes from two CLL experts who many of my leukemia friends know too well.

“First, patients with CLL should never have live vaccines.“ Dr T. J. Hamblin, Professor of Immunohaematology Southampton 1986 to present. Honorary Consultant Haematologist Kings College Hospital, London, 2004-present.

“CLL patients should not get the shingles vaccine as it is a live virus.” Dr. Richard Furman, assistant professor, Division of Hematology and Oncology, Weill Medical College at Cornell University, New York, NY.

I will keep you posted, though the change will come slowly, it surely will come.

To quote Rabbi Tarfon

It is not your part to finish the task, yet you are not free to desist from it. 

Pirke Avoth 2:16

"Cause you got the right line to make it through these times. I got a line on you babe" Spirit

No I don't. Not anymore. The nurse pulled my PICC line. My Peripherally Inserted Central Line is history. But what a history.  Served me up a second chance at life and saved me a thousand cuts or at least jabs. It didn't want to give up easily. My vein spasmed in a vain or should I say vein attempt to hold onto its buddy. A painful tug, and my old friend was medical waste.

Today I have one less link with my transplant. My sticky connection with my month in hospital is losing its hold on my mind and body, and the visible reminders are being stripped away. The mask, the hair or lack there of, and now the PICC line. It also foretells of just a touch more freedom. In a few days, I can shower without my vinyl sleeve and can even go swimming. Surfing will have to wait.

I am sure I will miss it next time I need a blood test. I have forgotten that special sting.

Good bye, my faithful friend.

Dr. Forman thinks my welt might indeed be an infected bite, but only wants to treat it with heat and topical antibiotics. It might come to head and drain, which means my white cells are doing a fine job of damage control.

Next month I get a follow-up CT scan and BMB about 90 days after my last ones.

This week I wait for my flow cytometry (cancer check) and engraftment results, both of course taken from my peripheral blood today for the last time through the PICC.

Tomorrow I will post about the herpes zoster paper I reviewed and why it is important to the CLL and transplant community.

Finally I ask you to continue to please pray with me for more good news on my blood test and those of my friends in similar battles.

" What's this? A kiss? To tell me something I missed?" Randi McMatthew

Randi is my favorite songwriter.

Maybe I missed the kiss of a spider? Woke up yesterday with a welt on my chest. When I prepared for bed last night, it had grown 2 jagged lines extending in opposite directions, like spider legs or lightning bolts.

To me that means lymphangitis. An infection from a bacteria in the fangs of the filthy mouthed arthropod or maybe on my colonized skin that the creature injected as it bit me. Now it's careening through my lymphatic system on its way to creating septic havoc on my immunocompromised body. I can get pretty dramatic.

Do I call City of Hope more than 4o miles away? The thought of what germs I might encounter in a local ER on a Saturday night scares me more than my rash so that isn't in the cards.

Instead I decide to smother it with Bactroban ointment (a very good topical antibiotic) and positive affirmations and wait to see what the morning brings.

It's better. Not gone, but better.  I am deeply relieved.  My immune system is still working, albeit somewhat sluggishly. Dr Forman can pronounce judgement on my red mark tomorrow.

Since there was no trip to the hospital, I had the chance to work all day on the Zoster paper. There I found a surprise with a big CLL connection which I will share as soon as get a few more facts.  Who would have though a paper on shingles would  push all my CLL buttons.  In a good way.

"I've seen the needle and the damage done" Neil Young

"I need a shot of redemption"

Paul Simon

I have been reviewing a medical education paper for publication on herpes zoster (shingles) with a special focus on the vaccine, a shot of prevention.  

My job is to critically read and edit the article, plough through the 30 or so referenced articles and make certain that they are all quoted accurately and in proper context. Next I check that no major articles or topics were omitted. My report is due next Tuesday, Nov 11, so I won't be writing much on the blog before then.

The vaccine for shingles is a good idea for most over 60, but not for those of us with suppressed immunity. That means anyone with any stage CLL. It also means anyone post transplant for a long long time. It's kinda like youth. Those who need it the most, can't get it.

I love doing these reviews. Takes my mind off my own issues and reminds me that I am still a practicing, if disabled physician.  It is good work, but not as good as direct patient care.

The holy trinity of medicine: Patient care, research and teaching. I have been lucky to be able to do them all. And soon, G-d willing, I will be back to them all.

"And she shows you where to look among the garbage and the flowers, There are heroes in the seaweed" Leonard Cohen

 There are children in the morning

They are leaning out for love

And they will lean that way forever

While Suzanne holds the mirror

Leonard Cohen

It all comes down to where I look. It helps to have someone hold the mirror, but I must be ready and able to see and focus.

Only going to clinic ever two weeks pulls that focus back from CLL most of the time. Not wearing the mask and eating more foods make the disease seem remote. Soon I will be traveling for much needed CME (continuing medical education) to conferences where last year I was the speaker. All of them local, so still no planes. Not flying and not lecturing are reminders of my fragile immunity, as is the shudder I feel when someone coughs or sneezes near me at the library or pharmacy.

Oh yeah, and all those pills I still take morning, noon and night and the central line that my wife flushes daily.

My focus is also pulled back to CLL when I do my "show prep" for my appointments with Dr. Forman and when I wait and worry about the pending results.

Emails and questions from fellow cancer voyageurs are pleasant prompts as they usually call on me to reflect on ground that I have successfully covered.  It adds purpose to my travels. And to be honest, it is never my decision to make or my treatment to plan. When it comes to CLL, each one of must load up on the relevant facts, organize the right team, and then step into the abyss with complete faith in our choice and with no regrets. 

Not working allows me to explore the nearby parks and beaches, but also ironically reminds me of why I am not working.

But mostly I am enjoying my days. More than ever, because of this extra time I have been given. It is all a recursive exercise. The leukemia has created my new reality. And that is just fine with me.

But sadly, because of the risk of aspergillosis from the soil, I still worried about stopping and smelling the roses. 

" Turn off your mind, relax and float downstream" The Beatles

It is not dying, it is not dying,

Lay down all thought surrender to the void,

It is shining, it is shining.

That you may see the meaning of within,

It is speaking, it is speaking,

That love is all and love is ev’ryone,

It is knowing, it is knowing.

The Beatles

I just returned from sitting Zazen all day at the Mount Baldy Zen Center. Driving through the rain and clouds, dodging the rocks tumbling from the hairpin turns on the mountain road, I truly left behind the illusion of my civilized life, to enter the mind stopping realm of Zen. The real world of what Leonard Cohen has called the marines of consciousness.

Within moments of arriving, I was silently sitting in the Zendo, legs crossed, for most of the next 4 hours, punctuated with some silent walking in circles.

3  identical bowls, dish towel and cloth napkins, and 1 cup were the instruments of our semi-formal ritualized silent lunch. When finished the filling meal of home made bread, salad, soup and tea all was cleansed with the boiling water poured from the old kettle passed up and down the table, and neatly stored for the next meal. When I stayed for a week a dozen years ago, I used the same 3 bowls for the week. And they never saw a kitchen sink. All cleaned up at the end of each meal. Minimalist, perfect, simple: Zen. Then silent sitting and walking Zazen for another 3 hours. Formal tea, casual vegan pizza (the rest of the gang enjoyed a beer) and at last a chance to talk and catch up. Then I was on my way down the mountain.

The chattering brain of mine hates the silence. My knees and inner thighs scream to move. But you can't move. You can't even scratch the powerful itch that began 2 seconds after the bell rings to begin the meditation. You sit still like a rock until the clapper sounds and you can wiggle for a minute or two until the stillness begins again.

It is not relaxing. It has no purpose. None. It will not heal me. Does not increase immune surveillance or aid in the engraftment.  

Maybe it gives me a broader perspective. I am not sure. To paraphrase Tom Robbins you don't meditate with any goal in mind. 

So why bother? 

May I please answer with an old Zen joke? You will find it published under my name (Dr. Koffman, the comic) in Joke Stew and other anthologies.

I went to a Buddhist retreat and it was a big success. I learnt nothing.