Jaymun Foundation
Laying in Bed
| 7/24/2009 |
Today Jaymun had to lay in bed flat on his back to guard against spinal fluid leakage and help healing around the lumbar ommaya which was placed in surgery yesterday.
You can tell he hates to be moved - and the discomfort is from his back. After him having another seizure last night (and then little twitches in his foot) this is quite tense for his doctors. With chloromas/leukemic infiltration in his head every sign of neurological distress and/or lack of normal behaviour worries us all. The chloromas could be growing, pressing against his brain, and doing permanent damage. The docs are accustomed to intervening when necessary and their experience is saying "Radiate Now!" Right now our most precise diagnostic is observation ...and this ommaya surgery has temporarily muddled precise clinical evaluation of his neurological status.
However, from what I understand, with relapsed AML (post-transplant) there is not much long-term guarantee with radiation anyway. It may be the last tool in their toolkit, but it has a fair amount of collateral damage and risk that goes along with it: (IQ loss, glandular destruction, marrow damage, secondary cancers, permanant aplasia, etc.) If we have to use radiation, then the longer we can delay it the better (to reduce cognitive damage). I know people with refractory leukemia who had radiation and had CNS relapses afterwards anyway. So if we go there, my gut says it won't be a final cure ...and that we'll have to conquer the monster in other way anyhow.
So delaying radiation serves a double purpose
#1 Reduce long-term side-effects, and
#2 Hope that we would achieve the "impossible" and avoid it altogether.
And, although one could say there is not clinical trial data supporting alternative therapies for CNS AML,
which is better: broad-clinical trials or specific previous experience with the patient in question?
Remember, last year Jaymun had active CNS leukemia and we achieved clear tests twice with alternative therapies.
So I guess radiation is a last resort, and granted - we may be almost there now. If his clinical situation does not improve the next days/week, if his CNS blasts do not clear quickly, or if the visible infiltration/chloroma does not fade from view then I think we know what to do.
Some might argue the past 12 months were a test all to themselves ...a test that failed, and so Jaymun needs radiation immediately. However I would make the counter-argument that it was rather yours truly that let Jaymun down these last months by not scheduling proper surveilance and/or continuing a relatively non-toxic treatment routine until well past the point his CSF was clear again. I suppose my excuse is that spinal taps were just so clumsy to schedule (sedation, etc.), and with the recent spate of traumatic taps I wasn't thrilled with the quality of diagnostic information anyway. In any event - now that we have the ommaya that reduces those problems and you better believe I'll do my best to not make that mistake again.
Others might argue that now is the best time to use every weapon available to get the best possible result. But already we avoid some chemo tools that tend to create resistance ...we use the ones that might get a better result without creating extra mutational roadblocks that stand in the way of future treatment. And considering we employed alternative tools that were effective for Jaymun, then I think that downgrades CNS radiation in this situation to one of those risky tools.
