Thursday, November 20, 2008

"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 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 if you can help with my book in any way. It would be much appreciated.

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Blogger Susan C said...

So good to hear that you're "writing up a storm" amidst the storm of uncertainty.

If you decide to go to the hematology convention, try to book a room pronto. I wanted to go up to SF that weekend for a party, but the hematologists seem to have booked every room in the city. Ironic.

November 21, 2008 at 8:46 AM  
Blogger Barry B. said...

I have ALL of the negative prognostic indicators (except 17p del, as far as I know). I'm now in the final stages of CLL, but my point in writing is that in spite of this aggressive CLL, I went EIGHT YEARS without treatment.

I used green tea, EGCG, curcumin, zinc, and other 'soft' treatments, which, while not curing my CLL, I firmly believe gave me years more of life.

And, it can't really hurt, I don't think.

November 23, 2008 at 1:46 PM  
Blogger CLL SPOUSE said...

Just want you to know that I read this and have been thinking about your request/invitation at the end. I'll write to you privately.

Just wanted you to know I didn't miss it or overlook it.

December 3, 2008 at 8:19 AM  

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