The LRF Conference
Before I go into the details of what is new and important in CLL research, let me just remind you that we have today in the way of therapies, to be honest, is not all that great.
Most of us with CLL will die from CLL or its complications or the complications of its treatment. Unless the disease is truly indolent, or we are pretty old at time of diagnosis.
CLL is not a "chronic" disease because the treatments that allow us to live with it are so darn toxic, you can't keep them up for very long, and can maybe only repeat them once each if you are very lucky and very responsive. The only cure on the table today is a transplant with a 20% or more chance of killing you, a high risk of trading one incurable ailment (GVHD) for another and a 100% chance of robbing a year or more of your life as you recover, much of it feeling pretty punk.
Not that I am not grateful that we have these options. It is a much richer palette than 10 years ago,
But we need better. We need more research, We need more focused immunotherapy. more small targeted molecules, less toxic immunomodulators, new transplant protocols, and new paths to a cure that are still in the test tube.
Please support LRF and CIG (see link on my sidebar). The answer is in research. Please consider advocacy. CLL is the poor sister to the big cancer in the research budget. LRF can give you the tools to fight, not just for the cure, but let's be honest, first for the money for a cure.
Most of us with CLL will die from CLL or its complications or the complications of its treatment. Unless the disease is truly indolent, or we are pretty old at time of diagnosis.
CLL is not a "chronic" disease because the treatments that allow us to live with it are so darn toxic, you can't keep them up for very long, and can maybe only repeat them once each if you are very lucky and very responsive. The only cure on the table today is a transplant with a 20% or more chance of killing you, a high risk of trading one incurable ailment (GVHD) for another and a 100% chance of robbing a year or more of your life as you recover, much of it feeling pretty punk.
Not that I am not grateful that we have these options. It is a much richer palette than 10 years ago,
But we need better. We need more research, We need more focused immunotherapy. more small targeted molecules, less toxic immunomodulators, new transplant protocols, and new paths to a cure that are still in the test tube.
Please support LRF and CIG (see link on my sidebar). The answer is in research. Please consider advocacy. CLL is the poor sister to the big cancer in the research budget. LRF can give you the tools to fight, not just for the cure, but let's be honest, first for the money for a cure.
Labels: LRF Conference Oct 2009
posted by Brian Koffman at
12:58 PM
2 Comments:
Thanks for the update. You are right we need a cure or at least a long term low toxic therapy.
Brian,
You implied you will discuss what's in the pipeline. I hope so. Don't leave us with the lesson from the conference is we have little hope!
Helene
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