Sunday, December 14, 2008

"Please understand I never had a secret chart to get me to the heart of this or any other matter" Leonard Cohen

Not much punch to this post. And certainly no punch line. Only the sober business of making choices.

These are my crib notes for tomorrow's appointment. Possibly the most important doctor's appointment in my short life so far. 

Or maybe not.

Dr. Forman Dec 15, 2008

Ask what he plans to do and shut up and listen:

If he recommends wait and see with a repeat CT and maybe BMB early in the new year then I must get across two points

1: Why not an urgent DLI?

As he is well aware, if I lose the graft or don’t have a second transplant my chances of living to 65 are negligible. I must make difficult choices, and not be guided by wishful thinking, but by the reality of my circumstances.

Without a new immune system, my brand of CLL is universally fatal. GVHD from a DLI can be too, but much less often.

When I relapse which odds are will be sooner rather than later, based on the medical literature for pts with 11q del and unmutated status, plus my personal disease history of quick growth when not getting treatment, I will then quite possibly be Fludara refractory with a very small chance of another CR (under 20% in most studies), so my likelihood of a second long remission are slim, and diminish with each subsequent treatment. More importantly my best chance for a cure with a second transplant is with a deep remission.

2: If CT or BMB do show any hint of relapse how seriously is he considering a second transplant?

If he is noncommittal, I argue that my indications are even more cogent for a second transplant soon than they were for my first transplant, as I have a lower disease burden, likely present access to the same well-matched donor, and my good health in a particularly nasty disease that definitely will reoccur without a new immune system.

If he recommends more FRC

Same argument. Even if I get a lengthy remission, which is very unlikely based on the literature with my 11q- and my unmutated status say 3 years, then what do I do? Also O’Brien and Keating did not recommend it, and the literature suggests once you have reached MRD- status, not much advantage in going further. I need to plan several moves ahead.  By doing more FCR now, I may be playing a card that I might need later to get into a complete remission for transplant if  the changes on the CT scan are not getting worse and I do remain in CR for a long period. I think this is not likely, but is possible.

     If he recommends a DLI

I need to ask if it doesn’t work, does that jeopardize the risk of a second transplant? What dose to start?

            If he recommends a second transplant,

Discuss finishing FRC first and what conditioning he plans.

Finally: Insurance forms, FU appointments and testing

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Blogger Dragon Slayer said...

Best of luck today Brian. You have all the skills and knowledge to create a situation that will provide you satisfaction and give you peace the rest is up to the universe.
Your cheerleader

December 15, 2008 at 10:57 AM  

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