Tuesday, April 29, 2008

"Let nobody put a loophole, a loophole in their way" Leonard Cohen

I told you I was curious
I never said that I was brave

So Long Marianne by LEONARD COHEN

I have leukemia and I am planning a first remission haemopoietic stem cell transplant (like a bone marrow transplant) with no history of any cytotoxic chemotherapy. No heavy drugs at all. Only Rituxan, a mouse antibody that targets my good and bad white cells (specifically my B lymphocytes) and cyclosporin A used to suppress the immune system in transplant patients and auto-immune diseases. I am going for the ultimate weapon in the war on cancer when I haven't once used any of the conventional tools of that war (chemotherapy) This is an aggressive and novel path to a cure. But my CLL (chronic lymphocytic leukemia) is knocked way back. Last year was tough. In hospital 5 times for low platelets from ITP (immune thombocytopenic pupura, a disease where I destroy my own platelets and can have uncontrolled internal bleeding). It is not untrue to say I could have died. But now, my blood counts including my formerly disappearing platelets and pesky lymphocytes are back to normal. My serum chemistries and tumor markers are all within normal limits. My nodes which used to be 5-6 cms are all shrunken. My bone marrow which had 90% cancer, now has 3%. And I feel great. But my cancer is not gone. It is in remission, and its most virulent hordes may rise again. I don't know when, maybe never, maybe soon. So like the Amalekites, I will blot out their memory and kill their children's children. And the only way to be certain it stays gone is eternal vigilance. That means a new immune system, because mine is not up to the task. So I am getting my new blood system from my unknown, out of the country, blessed 22 year old male biological twin. A perfect 12 of 12 match, with even my A- blood type. It is very sobering to be doing this when I feel so well. I am trading off an unknown length remission for a chance at cure The numbers are sobering. Without a HSCT (haemopoetic stem cell transplant), my chances of reaching 65 would be very slim. With it, I have at least a 10% chance of dying in the first 100 days, a 30% chance of severe graft versus host disease, both short and very very long term. Double the death rate even 10 years out. Missing half a year of work wouldn't be a surprise. But it gives me a 50-70 % chance at a cure. Most people wait for their HSCT as a "Hail Mary" desperation last move. I am doing it from a very healthy and quite elective position. I haven't even had any real chemo yet. I have other cards I could play, but I have the perfect donor and a deep remission and my good health so I am gambling it all. The stars are lined up. Would you gamble it all? I am so scared but so convinced that is the right thing to do. I have no doubt I should move from strength to strength. If the transplant is safe for me and the donor, I will soon be writing my most original essay on how I spent my summer! But first I will visit family and friends. I have been crazy busy squeezing much fun and travel into the months before my planned stem cell transplant in June. Just back from Prague and Vienna, before that, Seattle and Vancouver... Next, Baltimore, NYC and Toronto. I am so lucky to get to do all this traveling to see my family or just see the world. After the transplant, I will be content with the view out the window for a while. My point is that CLL forces us to face our mortality, and because our time is limited (Me? I expect I've only got another 40 years or so before I move on), it is too precious to waste. The hardest part for me after the transplant will be not practicing medicine for months. It so defines who I am. I am making this last push of teaching and seeing tons of patients as I also must do my own prep for the transplant. For now I am planning a real-time graphic novel about the transplant with my artist son. How cool is that! Please forgive my bravada. It is my way of coping with my real fears. I have no doubts of my ultimate success and no illusions about my trials.
Brian, 56 yr family doc & father of 4, dx 9/05 with CLL del11q, unmutated CD38+ zap70+

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17 Comments:

Blogger howard-davis said...

Dr. Koffman ok than. I will follow your progress too. In hopes of seeing you fully recovered in the not so distant future. Know that putting light on this process will help cller`s like me make better decisions when the time comes. Best wishes. Howard

May 3, 2008 at 12:53 AM  
Blogger Chonette said...

This comment has been removed by the author.

May 3, 2008 at 7:07 AM  
Blogger Chonette said...

Brian,
I would have followed your path early on as well, but it is only over the last couple of years that Stem Cell transplants are recommended early on. As it is having been very careful with my treatments over the last 5 years, and knowing that nothing else can be done I am now going for a transplant as well having found a perfect matching donor even before I start my Campath HDMP treatment, and the pre-conditioning before the transplant.
I am so glad you are writing your experiences and sharing them with us, it is so good to have some humour in the middle of all this.
Travelling has always been my passion and I think those of us that enjoy to travel will always find the way to continue travelling. I was in Madrid at the weekend, wonderful city and wonderful weather.
All the best and I look forwards to all your writing.
Best wishes
Chonette

May 3, 2008 at 7:13 AM  
Blogger ccw said...

Hi Brian. I am 53, and have had CLL for about 14 yrs now, never treated, but the time is coming, I know. I will be reading of your experiences, and thank you for posting them for the rest of us out here dealing with these very difficult treatment decisions.
I know how hard it is to decide on a transplant. Where are you having it?

Craig

May 3, 2008 at 9:03 AM  
Blogger DWCLL said...

Two nice jewish boys, both 56 yoa, both doctors with CLL with 11q deletions...who'd have thunk it! I am the "Doctor with CLL" who has commented on Chaya's blog re PC's transplant.

I wish you the very best and will be following your story very closely as I will likely be taking the same path in the not too distant future.

May the Lord shine his light upon you,

DWCLL

May 3, 2008 at 12:36 PM  
Blogger howard-davis said...

Nice Jewish boy #3 , age 55 that`s me. What`s up here with these genes... Howard

May 3, 2008 at 12:59 PM  
Blogger Matt said...

Brian,
I had a stem cell transplant on Sept 28, 2004. Not the most fun I have ever had, but always interesting. Well not interesting ALL of the time, there is so much waiting around - but I got good at waiting.
I consider myself to be the luckiest guy in the world. I am in nearly perfect health, some very small GVHD symptoms - just enough to know that the graft is still there and doing the job.
want free advice? if not skip.
Put on some weight, don't worry, it will come off later.
Pack up all the reading you have been wanting to do and now will have time.
Do not go to the hospital during pledge week on your NPR station. I did this by mistake.
experiment with some hot cereal and bland food that you can eat on a pretty lame stomach.
Get as active as possible as soon as possible. My wife is a PT and pushed me hard to get active and I owe her my life & more.
look forward to that first cup of coffee 4 or 5 months down the road, God is it great!

Well, you are going to be in for a ride. I wish you all the luck in the world. Matt

May 3, 2008 at 8:19 PM  
Blogger Matt said...

Matt again, I forgot, watch out for shingles. 10 times more painful than any part of the transplant.

May 3, 2008 at 8:23 PM  
Blogger Brian Koffman said...

I appreciate all the tips and kind words.
M y HSCT in scheduled for July 1, Canada Day, at City of Hope in Duarte, CA
The jewish connection is real, There are published papers reporting statistically significant higher incidence in Askenazt Jews.
I do not know if it is an occupational hazard for doctors, but I have heard that the last generation of oncologists who would mix up the chemo cocktails for their patients without the modern protections we use had an increased risk of leukemia.
Be well
Brian

May 4, 2008 at 2:28 AM  
Blogger RosinbagPT said...

Yet another Jewish male with CLL, 44 years old. Sounds like the making of a movie... anyway, Brian I will keep up on your progress and maintain hope for what comes down the road for me.

Be well!

Michael

Hashem is with me, I shall not fear..Adon Olam

May 4, 2008 at 6:10 AM  
Blogger Wendy S. Harpham, MD said...

Dear Dr. Koffman,

As an internist, mother of three, and long-term lymphoma survivor, I've been living, thinking about and writing about survivorship since 1990. I've also done reading and writing about "when a physician becomes a patient." I will subsribe to your blog with hopes of being able to offer support.

Many people have walked the sct walk before you. You might consider checking out one of the transplant listservs. Since you are going into it in such good shape, I am hoping your blog over the next few months expresses surprise at how smoothly the transplant and recovery are going.

You might be interested in my blog on Healthy Survivorship. A "survivor" is anyone who has ever had a cancer diagnosis. A "Healthy Survivor" is a survivor who (1) gets good care and lives as fully as possible.

With hope,
Wendy
www.wendyharpham.com

May 4, 2008 at 6:32 AM  
Blogger Melissa O'Mara said...

Hello Brian,

Thanks for sharing your story here. We will be following it closely. I look forward to all parts of the story, the journey... Much more than just a physical journey, of course :-) Enjoy these next few months - freedom and the calm before the storm!

Melissa O'Mara

May 4, 2008 at 8:49 AM  
Blogger Susan Leigh said...

Here is a very nice Jewish girl with CML (chronic myeloid leukaemia) 6+ months post stem cell transplant - here in London.

Just to wish you all the very very best and although I am sure that the protocols are different for the different leukaemias the transplant wasn't too bad for me.

Susan
www.caringbridge.org/visit/susanleigh

May 4, 2008 at 11:23 AM  
Blogger Flow_ence said...

AWESOME_ as you truely are..Adventure_ so it is!
Thank You for sharing your light as you have done so many times over the past 18years.
When you turned '40' you set out a direction of developing: your humor, your spiritual development and enjoying your family & friends. You have made many choices and had many adventures. you have absorbed each moment of life, in its beauty & excitement since that time & You have ARRIVED!
Now you are on a journey that was not in the plan but you have given yourself the strength of courage and wisdom for this journey. You have surrounded yourself with loving & supportive people.
All the light & compassion you have shared with others for years and years is so vast ~ it will carry you through the challenges ahead... the light will permeate your being in renewed health...Know you are loved.
I will follow you every step of this journey.
An eternal friend
Flow

May 9, 2008 at 8:22 PM  
Blogger Natalie said...

Yes, I would gamble it all---again but just for you this time.

Know that all of your devoted patients, not the least of whom is me, will now gladly take our turn to buoy you through this journey with our prayers, never letting go until you safely reach the finish line.

May 17, 2008 at 5:18 PM  
Blogger Tricia said...

I have felt for quite a while that something was not quite right when I would see you, but I always thought it was me. To learn of the CLL really put things into perspective. During my visit today I sensed the old Dr. Koffman back in his groove. Maybe it is because of the new sense of hope that you have. Regardless, you took the time to listen and to throughly go through my history to make sure that everything was covered before you go out on a temporary leave. The least that I, and my family can do is to keep you in our prayers as you go through this trial. We know how difficult it will be as we watched my husband's sister go through a similiar process. We will look forward to reading about your progress as the days wear on. May the Lord be with you through the brightest days and the darkest. The Boss's

May 28, 2008 at 6:28 PM  
Blogger Barry B. said...

I like your thinking about stem cell transplants. However, I've been afraid of the risks involved. As you know, it is no picnic.

On the other hand, a transplant offers the only possibility of a cure.

I've waited too long, apparently. I had a long watch and wait with no real progression. Then suddenly, my cll took off. I decided to do high-dose methlyprednisolone and rituximab. I had an excellent response, but it was not very long-lived. I was pretty devastated.

I'm exploring a stem cell transplant as well, though the odds are not what I call excellent. However, everything depends on me getting into a good remission, which is an iffy proposition.

Good luck in your decision. I see more and more CLL patients going your route. Perhaps they are doing the best, proper way.

May 29, 2008 at 8:09 PM  

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