Monday, November 17, 2008

"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. 

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Blogger Wendy S. Harpham, MD said...

Dear Dr. Koffman,

Wishing you patience, wisdom, fortitude and hope as you undergo re-evaluation, consider your options and make treatment decisions.

With hope, Wendy

November 18, 2008 at 6:47 AM  
Blogger Judy Cleri said...

Dear Dr. K,

I'm so very sorry to hear this news. We were all just waiting for the good news to say that your were 100% donor.......BUT what fantastic news that you still show no CLL.

While doing my Bible study this morning I was reading Psalms 7:1 "O Lord my God, in thee do I put my trust..." So, there I will put you our Lord's feet. What better place could you possibly be? He is in control here and is allowing this for some reason, so onward we march..... waiting for His perfect timing.

Keep up the fight.....this is a battle that you will win, unlike your Kings........sorry couldn't pass it up.



November 18, 2008 at 7:29 AM  
Blogger E. Kostich said...

The drops of rain make a hole in the stone not by violence but by oft falling. ~Lucretius

November 18, 2008 at 7:36 AM  
Blogger elyse said...

Brian may I ask by you went into a transplant so quickly. Did you have poor prognostic markers?


November 18, 2008 at 9:37 AM  
Blogger Ronni Gordon said...

Hi Brian,
As you might know from reading my blog, I rejected my graft and had a repeat transplant. The second time, they added the rabbit serum (ATG), and said they were "confident" that would make it stick, and (knock wood) so far, it has. I'm sure that being a doctor you are in an especially good place to weigh the options, of which, thankfully, there are many. And of course it's great news that you are leukemia-free.

November 18, 2008 at 11:50 AM  
Blogger J.R. said...

Sorry to hear the news Brian. It's time to regroup and reformulate the battle plan. The fight's not over and I know you'll taste sweet victory in the end!

November 18, 2008 at 2:34 PM  
Blogger Susan C said...

So glad to hear that you are feeling and looking well and continue to be cancer free. I'm so disappointed that the engraftment doesn't appear to be working, but, as Wendy said, wish you the best as you make decisions.

November 18, 2008 at 10:42 PM  
Blogger CLL SPOUSE said...

I almost wrote yesterday, but hesitated...don't know why. Just wanted to applaud your WRITING of this post - the honesty, the transparency and just what it must have taken.

As a professional writer, I was keenly aware of the work behind conveying this of information. Most people put the pen down (or keyboard) in the face of such news. I admire the way you pressed on and updated.

November 19, 2008 at 6:09 AM  
Blogger Mikha'el said...

Thanks again for your strength to keep posting on all levels of your journey. I will continue to keep you in my thoughts and send you positive energy towards healing.

November 19, 2008 at 5:48 PM  

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