To CT or not to CT: That is the question.

I saw Dr. Kipps for the first time in 6 months yesterday and the cold facts were good, in fact very good.

My lab remains perfect, and for the first time since transplant, my ALC is WNL. More importantly, my node exam by the meticulous Dr. Kipps and his magic fingers revealed nothing pathological. One small node in the neck was about it and it was around one cm. Nothing else found worthy of comment.

Based on my exam and routine lab, you would hard pressed to say I had CLL or had had a transplant.  Nearly four years out, and I am pretty unscathed to use the language of Dr. Rai.

Moreover the fact that my bone marrow cellularity was normal for my age at 40% told us that my blood making organ had bounced back very nicely from last year's toxic blast. My reserves may be down and may have a more difficult time rebounding from future treatments, but my marrow is doing great now.

In fact, when we look at the NOW, and what else is there to look at, it's all good. 

Sweet!

But Dr. Kipps had a different take on my CT report of my mesenteric lymph nodes doubling in size from 1.1 to 2.2 cm in just three months between the end of December and February.

He was incredulous. 

It doesn't fit with my healthy state and my clean as a whistle BMB.

He is another on a short but prestigious list of docs (Castro, Rai, Forman) to say that CLL doesn't come back in nodes. It likes to stop off in the BM first. Drs. Khouri and Keating might beg to differ. However, Kipps added this important caveat: the only time it relapses in the nodes is post Campath, and that sure isn't my case. And Khouri and Keating sure like their Campath.

Kipps just doesn't believe that last CT report. I told him that I had 4 different radiologist read it, and he still has his doubts.  He pontificated and I don't disagree that radiologist like to be pathologists and internist too.

Assuming these nodes have really grown (which is where I start), what the heck are they? 

Normal fluctuations? I have my doubts that normal fluctuations would have seen growth over three CTs spanning a full 6 months. But maybe.

An unknown viral culprit?  That could also explain my fatigue.  That would be more good news. Dr. Kipps believes that in that case IVIG might help my fatigue. It has a track record.

It could be telling us something worse. Post transplant lympho-proliferative disorder (PTLD)? This is the path that Dr. Furman suggested and Drs. Rai and Forman rejected out of hand. My lab work-up was negative, but that doesn't really rule it out. 

The dreaded Ritcher's transformation (RT). I am just too well for that, aren't I?

So the best way to tell according to Dr. Kipps, is to repeat the CT soon and see if they are growing. Or not.

If not, no worries. The nodes were nothing, or my vegan diet, Zeolite, digestive enzymes, and flaxseed oil has beaten them and with them any trace of my CLL into submission.

We can all relax, for a long time, G-d willing.

If yes, then the next step in a BMB to see if my CLL is still gone, gone, gone. 

If the BMB  still shows MRD-, and my nodes are still growing, that's where things get weird, and scary.

Maybe then Furman and Kipps are right. Maybe it isn't CLL in my nodes. And  many of the immuno-suppressive treatments used to treat CLL would make PTLD much worse. And wouldn't touch RT.

That means a none too easy mesenteric node biopsy because we need a sure diagnosis before we start a treatment. I am not liking the sound of this. That could lead to all kinds of risks and complications.

If both the nodes have grown and the CLL is back in the marrow, I know the story, and the story lines leads to transplant two. And I could ask myself, what advantage was served by forcing to expose my hidden cards earlier than needed in the game. Is my chance at a second CR improved? Probably, but at what cost?

Maybe that is why the wise Dr. Rai told me to tell Dr. Forman to stop with all the CT scans.

Here I am back in the usual CLL place: conflicting advice from world experts.

I think I am NOT going to think about it for awhile and wait to see if a light goes on or my hand is forced.

The best advice I got from Dr. Kipps, and we can all agree on this one:

Don't do anything stupid.

For me, that means sitting on my hands for awhile.

An in depth Interview with my son Will

To understand a little more about my youngest son, Will, please check out the interview at http://www.kinkypeanuts.com/beneath-the-surface-of-will-koffman/

Then visit Candy for your Eyes

And finally,  have a good time at everybody's old favorite haunt:  http://killmecomix.com/

Not bad for a kid still too young to legally drink, with a BFA, magna cum laude, several one man and juried shows, and an amazing range of international commercial illustration projects already under his belt.

It gives you a sense of who he is and why we feel so lucky to have him in our family.

The real fun will be to see where he goes from here.

Another letter from a patient on faith, hope, fighting, planning, and luck

As a relatively successful basketball coach and teacher, if there is only one thing that I have learned it is this:  Out plan, out work, out rehearse, out scout and out practice your opponent and you will place yourself in a situation where you are controlling as many variables as you can.  Hope is wonderful and motivating but hope without preparation is mind fluff.  Luck is a variable.  Luck or the lack of luck can never be discounted in the human condition but as John Wooden so accurately said, “…luck is more often than not a byproduct of hard work…”.

 

Faith is essential as it confirms and embraces our efforts but it still comes down to fighting the good fight each and every day.

 

Keep fighting as I want to see you back at work soon.

"Relatively successful" My friend is being modest: Teacher of the Year in Orange County, many time champion coach, world class safari guide, and just a great guy. 

I think I will let my patients do more of the writing for me.

Debunking Common Wisdom and Positive Aphorisms

If you will it, it's no dream.

And a thousand variations.

Sounds good. What possibly could be wrong that sweet sentiment?

Plenty.

I don't know one CLLer or cancer patient who doesn't visualize and pray and scrape all their consciousness into a packet aimed at a future of no CLL or cancer.

And those, albeit very well-intended who dare to say that we are not pure enough in our thoughts, that we must KNOW and not simply hope for our favored future, those kind hearted souls risk punishing the already punished. I sense how much they are trying to help, and I do appreciate it, but they unintentionally suggest that if only we were purer or stronger in our thoughts and prayers, we would be well on our way to a cure. And the devil in me wonders if there is a hint of the holier than thou in some of their admonitions to us victims that we must try just a little bit harder. 

Medieval theodicy. The "SECRET" be damned.

I do encourage a positive attitude. I suspect it helps, a little. But it is no plan for taking on a killer in a dark alley, and there is actually better evidence that a fighting contrarian attitude has more survival advantage. Meditation probably helps too.

Hope is a different matter, becomes it gets you going. It gets you looking for options, be they psychic or medical, nutritional or crystal,  divine or nano, and that makes sense. Look to the future. 

If prayer is in your tool box as a way to do an end run around the oncoming linemen of the Apocalypse, then run and pray as hard as you can.

If some secret Amazon herb is going to heal you, but only if you believe, then believe. Truly believe. 

If the answer is Ayuvedic, then turn to the east. Meditate on that.

Whatever floats your boat.

But cover your bets, keep you eyes wide, and be prepared to abandon ship at a moment's notice.

The evidence on prayer is equivocal at best, but I am a cautiously optimistic believer, and welcome every prayer and good vibe aimed in my direction.  Who knows? Who really knows? Not me for sure.  

Here's what I do KNOW.

I don't know how I am going to win, just that I will.  The details are yet to be worked out. Even the definition of victory is ephemeral.

All my little hopes for this and that, they all add up to a medical certainty of a way out of this quagmire. I just wish the map didn't keep changing.

People who know me, know that I claim no stranglehold on the truth. 

Maybe my healing will come from prayers and I welcome them.

Maybe it will come from my hope and belief in my diet and supplements and even  Zeolite. 

But maybe it will come from my tough contrarian attitude.

In a future post I will debunk or should I say deconstruct: What doesn't kill you, makes you stronger.

A letter from a patient

As I have written before when I read your material I sense the polarity of the pilot vs the pirate. The pilot wanting exact metric readings and weather forecast in order to land this jumbo jet vs. the pirate who licks his fingers to feel which way the wind is blowing in order to set sails. Same courageous nobility just different hats! I sense via your writings that the thrill of the roller coaster, with all its mystery of unseen twist and turns has slowed into the day in and day out of the merry go round. Of course the merry-go-round offers a better view on life than the roller coaster. However no one wants to exchange the on your toes awareness  the roller coaster requires for the comfort of the mechanical rotation of the merry-go-round. I hope you continue to get both. My prayer for you is that you always have ample supplies in your arsenal. Supply list: humor (lots of it), lust for life (always surprises terrorist), planning (align soldiers to prepare for mass annihilation), attitude (CLL doesn't have a chance), Love of family (fabric of fight), spiritual guidance (top soldier),  ocean (humility in the face of real power),  and lastly get lost in the music (every soldier needs to be replinished). Dr. Koffman, if you have any of these than battle on! You are ready for any fight.  

I am so lucky to have some one like this in my life. Being a doctor has to be the best job in the world.  My patients give me so much. I am so blessed.

Thank you. Thank you all.

What's New

Patty is out of town for Will's graduation from MICA in Baltimore. Today he received his BFA magna cum laude at the ripe old age of 20.

On the side bar are his old http://killmecomix.com/ and his new Candy for your Eyes web pages. They are wonderful. Patty and I are so proud.

With Ben's graduation from Art Center, Pasadena in film direction last month, all our kids are through college (at least for now).

So if you need someone to help with a film or commercial, especially a documentary, contact Ben http://www.bkoffmanart.com/ and if you need any illustration contact Will. You won't be disappointed.

So now that I am finished shamelessly kwelling (Kvell, a Yiddish term, means 'to be bursting with pride; boast; gloat', and is usually used with the connotation that one is delighted with the accomplishments of one's children) and promoting my sons, let me kvetch ( this Yiddish word means grumble or complain) for a minute. I am getting tired of my own food prep (remember I eat no cooked food) and more tired of just being alone. The cat and dog help, but I get pensive and moody when I am alone for several days at home.

Today I made a raw organic broccoli-avocado-tomato-squash-brazil nut-coconut milk soup. It wasn't that great but I ate it all for lunch and dinner. I sure don't want to face any more of it left over tomorrow.

And the 4.7 earthquake didn't help my mood.

Nuff of this pity party.

I saw the new Star Trek movie at the local IMAX with my son. Dazzling.  Must see for any fans. The best in many years. I hear the Trekkers are complaining that there is so little to complain about.

Heard some great jazz last night at Jack Prather's CD release party. Listen to some of the material @ http://www.myspace.com/jackprathermusic 

Live jazz is hard to beat. My friends Leonard Thompson on keyboards and Dewey Ernie on vocals were there which made it extra sweet.

The ASCO (American Society of Clinical Oncology) meeting is starting. I have been reviewing the abstracts on CLL and transplant.

I wish there was some great breakthrough to report, but I was underwhelmed.  An interesting and important paper on VRE (Vancomycin resistant enterococci) post transplant, a new dosing schedule for OFAR, new monoclonals in the pipeline.

Time to refocus.

A demain

Settling In with Hope

Not much happening with my CLL these days. Not quite : All quiet in the Cancer front, but close. No thrice weekly doctors' visits with exciting lab results. So I review the old news, careful not to ruminate too much.

I got an email this week from a dear friend, a radiologist in Paris in response to some final questions on my CT scans.

What I got was a clear confirmation that my mesenteric lymph nodes grew between Sept. and Feb. at a significant clip.

I am living with that.

I am hoping that my raw organic vegan diet and lifestyle will help reverse that.

I am hoping my next treatment will be equally effective in preparing me for a second transplant.

I am hoping I will be well enough to do a second transplant.

I am hoping my donor will still be willing and available.

I am hoping that my insurance or whatever rushed through Federal insurance reforms doesn't ration expensive care like a transplant. I really worry about this one. It is with great sadness that I must say that it would be no exaggeration that I would probably be DEAD if I live in Canada. The medication that saved my life is not covered by most government insurance.

I am hoping next time I get ATG or whatever it takes not so I don't reject the graft a second time. This one still burns me, but I must look forward, not back.

I am hoping it works without too much GVHD.

What I am really hoping for is that I never need to do any of this.

What I am really really hoping for is that we find a cure. And very soon.

Borrowing a New Immune System from your Family

One of the problems with a hematopoietic stem cell transplant (HSCT) is that what you want is the new immune soldiers to march in, destroy ALL the bad guys and all their children and their children's children, then go home. It also helps if they bulldoze some of their favorite hiding places. All this and please no civilian casualties.

The problem is that if you successfully engraft (sadly not my story), then the soldiers (the new 100%  donor T cells and their allies)  are with you forever and these are trained fighters, and you, Mr. or Ms. Recipient, look like a prime target to rape and pillage. So while they might wipe out any strangling insurgents, they may also cause your life to be miserable with graft versus host disease (GVHD).

Comes along a fine study by Veronika Bachanova, MD, PhD  that uses natural killer cells harvested from a parent or child or sibling to do the search and destroy work. Since they are only a halploid (1/2) match your body rejects them after several weeks. 

In that time, they have shrunk your nodes and cleaned out your blood, marrow and spleen (if you still have one, that is) of any leukemia.

Great idea.  An elite force that attacks, then disappears into the night. Pretty non-toxic.

Especially makes sense if you are heading to a transplant, but can't shrink down some pesky nodes with FRC or OFAR or whatever.

Or if you can't find a donor that is a close enough match.

Also may be a real option for cleaning up residual disease. Like in my  gut nodes. Could it do a thorough enough job, like its big diploid (full match) sister, a HSCT, to be curative?  Way to early to tell.

Truth is that the only way be are ever going to cure this disease is through clinical trial, and if you think as I do that an immunological approach is a good place to bet your  money or your life, take a look-see at:  http://clinicaltrials.gov/ct2/show/NCT00625729

Natural Killer Cells With Rituximab In Patients With CD20 Positive Relapsed Non-Hodgkin Lymphoma or Chronic Lymphocytic Leukemia
(MT2007-12)

ClinicalTrials.gov Identifier: NCT00625729

Clinical Trials Office – Masonic Cancer Center at University of Minnesota
Phone: 612-624-2620, 612-273-2800, or toll free 888-601-0787

Principal Investigator: Dr. Veronika Bachanova
Phone: 612-624-0123

What I have given you is a gross oversimplification.

Chaya Venkat has a more detailed and referenced review of the study, and I thank her  (again) for her tireless work, sponsorship, and the great material on her web site:  http://clltopics.org/SponsoredProjects/NKCellTherapy.htm

The PI is a wonderful and kind person. Contact her if you are seriously considering the trial, or email me at BkoffmanMD@gmail.com and we can chat.

For myself,  while I am not flying off to Minnesota next week, I am definitely keep this study on my shelf in easy reach should  the need arise.

Wayne Thiebaud in Palm Springs

Wayne Thiebaud

Yesterday Patty and  I drove 2 hours to the desert and 2 hours back to catch the exhibit of 70 years of painting by the American master at the Palm Springs Art Museum.

His works  done last year at 88 years old are as vibrant and exploratory as the ones from 60 years ago. Wayne Thibaud is still teaching (and painting) at 89 years old.

It was dazzling up close.  Painterly renderings of everyday images with paint so thick that you can almost taste the donuts and pie on the canvas.

You leave the exhibit with your hunger deeply satisfied.

It was wonder filled.

Need the email address of the family concerned about about graft rejection, in fact I would love everyone's email address

Someone just sent me an email about a family member rejecting his graft.

I am not sure which post you commented on and so I can't find your email address that you included in your comment.

Please simply email me at BkoffmanMD@gmail.com and I promise that I will get back to you.

Does anyone know how I might search through all the comments without going through each and every post one at a time?

Does anyone know how I could capture the email addresses of people who want to stay in contact or ask me a question?

Someone suggested setting up a Yahoo group around this adventure and my book. Any comments or advise would be most welcome.

Please do email me at the above address if you want to stay in touch.  I would like that. The blog is not an efficient way for back and forth communication. Email works much better. 

I did walk of the beach today at sunset, celebrated my daughter's triumph with the NY bar last night by eating out at the Veggie Grill, where I had cooked organic vegan food (Bali Bliss and sweet potato fries). How wild is that! Back to my raw ways today.

Thinking about surfing for the first time in 3 years, but I will wait for the water to warm up a bit.

The fog is lifting.

Strange Daze indeed

Since taking the Maid of the Mist boat tour to the thundering splash of the Horseshoe Falls of Niagara Falls, I have yet to recover my land legs.

I am walking in a fog. Maybe it is the Umberto Ecco book that I am reading about an antiquarian book dealer who lost his personal memory and now lives in a mental fog (I can get too lost in a book), maybe it is my weird disturbing dreams and disrupted sleep pattern,  maybe it's my diet, maybe all I need a strong cup of joe (organic and free trade of course) and a piece of pie with "rice cream", maybe it's just a bump in the road as I plan my return to work soon, and must come to grips with the prospect of doing this whole transplant dance one more time like I mean it.

The very wise Rabbi David Wolpe got it right when he said referencing his own lymphoma:

"WE ARE ALL IN REMISSION. IT'S JUST THAT I KNOW IT"

I couldn't say it better.

I will sleep on it.

But first, I must share some great news: I must kvell (Yiddish for burst with pride). My daughter, Heather found out today that she aced the New York bar exams.  No small accomplishment.

The View from my hotel room in Niagara Falls

Nothing else to say

Did you notice the change in my blog?

This blog started with my plans for a transplant to save me from an incurable cancer, CLL. 

It was to be a toxic canon blast to wipe out my leukemia, yet somehow I also managed to reject the graft. During the process my CLL was laid low at worst, and wiped clean at best. No graft versus host, so likely no graft versus leukemia- just a killer single course of a chemo-immunological cocktail (FCR).

I have some gut nodes that may be growing, but I am doing my best to starve them out with my raw vegan ways, and I am exploring some options other than watching and waiting, both alternative and very edgy Western.

In some ways, it is as if my transplant never happened, so now I am really dealing more with my history with CLL (may it rest in peace).

Hence the new name: Brian Koffman's Awesome Transplant and CLL Adventure.

City of Hope Bone Marrow Transplant Reunion

Several hundred survivors of bone marrow transplants and their families, friends and donors met today at City of Hope to celebrate life. At this one hospital alone, it is estimated that over 25,000 patient years of life had been added by this procedure. Very special.

It was an amazing get together, that included the first successful transplant patient who got his new bone marrow 33 years ago. He looked great, as did the 8 year girl who met her German donor today. It is extraordinary to think that the very first person to have a transplant at CoH was attending his 33rd reunion. Remarkable in that success, but also remarkable on how new the medical technology is. Not often that you meet a "first" medical survivor.

I can't wait to see the group picture though I feel like a poser. No donor cells left in me, no stories of heroic graft versus host battles with the leukemia killed during the struggles. 

But seeing the ocean of diverse life around reminds that it can work, and I will do it again if the needs arises with clarity and purpose.

As the  7 year post transplant comic said: Wouldn't it be better if they changed the name of the hospital from City of Hope to City of Absolute Certainty. Wish I had thought of the line.

On a different note, I somehow must of tweeked my mid back- OUCH. Big time. I am pretty disabled. I don't remember doing anything dumb, and I have stayed away from the weights for a few days. Gets me worrying: Is there something else? This is when it stinks to be a doctor. Hopefully the pain meds will help me get a good night sleep and the pain will be better tomorrow.

Good and bad. Yin and Yang.