Wednesday, October 15, 2008

"Constant craving has always been" KD Lang

The fundamental things don't change
As time goes by

Herman Hupfeld

The results came in yesterday and the Kings handily beat the Ducks. That was the news I was waiting for wasn't it?

Maybe it is. Maybe it is the attention to the small joys that matter. Catching a bit of the game on the radio on my way home from my son's Ben premiere of his pithy documentary at Art Center. 

Our visit to Art Center was enlightening. Or maybe it it better to say that it got us heated up. I was wrong about the radio waves. The Spitzer orbiting telescope looks at infrared objects in near galaxies. The infrared sees the heat. Before a star is a star that gives off light, it gives off heat. With Spitzer, we see its birth. And we can peer through the dust and clouds into hidden spaces where maybe we catch a glimpse of an exoplanet. Who goes there? The scientists and artists involved in this project were forced by each other to open their minds to other ways of perceiving the universe. Right meets left brain. And my son documented the whole process. 

The film was received with excitement and wonder. Ben has many new friends in the world of science and art. I recommend you check out the show OBSERVE at the Williamson Gallery at Art Center. It's free and mind blowing. Ben's film is part of the exhibit.

Enough  kvelling over my son, whom some of you will meet this Saturday.

My labs? Ah  yes, my labs. Those results had promised to be the tender tea leaves by which to read my future.

I had constructed for my doctor a simple grid of my peripheral blood (PB) engraftment studies expressed in terms of percent donor DNA. Here it is:

July 16 (day 15+) T cells (CD3) 66%
All others 0% donor

July 31 (day 30+)
T cells (CD3) 62% Granulocytes (CD15)  40% Monos (CD14) 28% B cells (CD19) 34%  PB 32%

Aug 23 (day 54+) T cells (CD3) 64%
Granulocytes (CD15)  27% Monos (CD14) 25%

Oct    6  (day 97+) T cells (CD3) 64%
Granulocytes (CD15)  32% Monos (CD14) 29% B cells (CD19) 23%  PB 29%

T cells and monos are stable. B cells are down 1/3 (32%), granulocytes are down 20%, and PB is down 9% from day 30+. And really no change since August 23. I don't have B cells numbers for that date.

My false news of 100% donor B cells and with it, the resultant joyous extensions are long gone.

The truth hits at many levels.

First it like being told you won the lottery. And two days later, NOT!

You are not any poorer. You haven't lost any money. You are only back where you started, which in my case is stable mixed chimerism

With no evidence of disease.  And that's as good as it gets.

Dr Forman emailed Dr Khouri at MD Anderson Cancer Center. Issa Khouri did my friend  Ron's transplant  50 days ahead of mine and has extensively published his experience with CLL and HSCT. MDACC has probably treated more CLL with transplants than any place in the world. It is a big  enterprise and Dr. Khouri is their head of transplant.

Khouri concurred with Forman: Do nothing now, and monitor closely. There has never been any disagreement that we need to be most aggressive at any tiny hint of relapse, and for the first time ever the subject of re-transplant came up. But there are many steps ahead of that. Taper meds and DLI come first.

Khouri would also pull the trigger on a DLI if there is a dramatic drop in my donor percentage, which is a touch more aggressive than Forman. That dovetails with my approach.

So for now, nothing is changed. 

The emotional content is ephemeral.  The numbers are steady, and so am I. 

And I must prepare  for that celebratory  " Clinical trial"  next Saturday.


Blogger Judy Cleri said...

Dear Dr. K,

As hard as it is for me to say this, your Kings deserved to win the other night. My Ducks have just fallen apart. BUT, last night even though the lost to Oilers, they looked like the Ducks of old and that gives me great hope. Like you said, we must take that glimmer of hope and run with it.

That positive side of you will pull you through as it has pulled all of us through our various trials. Just when I thought all was coming to a end, you are the one who pulled me though and look at me as a fiddle....well maybe not fit but doing great.........and you will too.

Have a blessed day. And I' sorry, but I must not forget.......



October 16, 2008 at 8:14 AM  
Blogger Daryl Long said...

jillblDr. Koffman, I am glad to hear that your condition is steadily improving. Is a positive attitude helps a person live a long life you will live a very long time. I do not have a blog but I would like to cordially invite you to my facebook page. I guess you can find by searching for my name in one of my networks. One network is for Los Angeles and the network I belong is the Lord's Recovery. I studied history and should probably have my Phd by now but I was born a procrastinator. Anyways please visit my facebook page and take a look at it. I think you will be extremely impressed and entertained. If you visit it let me know what you think. I also crave comments. I suppose we have similar brains.

PS. I look forward to you returning to your practice.

Wising You a Very Long Life and Good health, Daryl Long

October 16, 2008 at 8:18 AM  
Blogger Unknown said...

Stay positive and stay the course. So long as the CLL is gone, you are wining the battle. You still have yet to see any real cGVHD so again, you are wining.

Protostars are also a lot of fun to view. The star cluster Pleiades is very close and one of the best placed to view young stars. Here is a Spitzer image of that region of space.

October 16, 2008 at 8:59 AM  
Blogger Ronni Gordon said...

Sounds like you're doing well with the "waiting game." I'm waiting for BMB results now and trying to keep the car on the road. Like you, I am trying to focus on the things I enjoy. Keep up the good work of keeping your perspective.

October 16, 2008 at 9:03 AM  

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