What I want for CLL

Here is the guts of an email that I sent to a friend and to the SLL/CLL yahoo list serve about what I dream about for all of with CLL.

I would love if there was an option that provided a high probability of a cure even if it was fairly toxic such as existing therapy for testicular cancer and others. Go through the hell of chemo and be done with it, except of course for the constant looking over your shoulder to see if our nemesis is returning and the very real late risk of a secondary cancer, especially another blood cancer including MDS (myelodysplastic  syndrome) always looming. Still it's desirable not to need to stay on meds forever. The possibility of the cancer escaping control or late yet unknown side effects is too high and we are living with cancer, not post cancer.

What we have now (outside of clinical trials) is the worst of both worlds, namely toxic therapies that hold no promise of cure (except for the transplant lottery). Gentle long term control is clearly a much preferable and believable possibility based on the very early but promising results with the new kinase inhibitors and the BCR blockers. That is why we are both glad that we traveled to OSU for ibrutinib and others may feel the same for their choices of GS-1101 and different new pathway blockers.

Still we must insist that the researchers don't take their feet off the accelerator. We are still far from home and for too many of us, the hour is getting late. Control is a great start and a big move forward. I am happy and lucky and extraordinarily grateful to be part of that early trial cohort. Maybe it is enough. Maybe there is a magic cocktail out there yet to be proven that will kill the beast once and for all. Maybe when the disease is a long deep remission, it then will be possible to drive a stake through its heart with new chemo or CAR-T or some yet to be discovered chemical. 

What I do know for sure is that I want to live enough years to be part of the proof that our control paradigm has the legs for a long long long  hassle free remission or better yet, to see and experience all of us crossing the finishing line of a cure. 

We are moving in the right direction but I wish it was faster. I want a near future in which we will have the best of both worlds. a low toxicity, highly curative therapy.