Surely they are expensive! But calquence has made made me feel functionally cured for over a year now. I've had zero copay as well so feel very fortunate.

I (we) feel you 100%, Steve (see my initial post if you'd like). I guess it's all about Time, really. That and having and being able to trust good doctors who will explain in plain language what's going on. I was told that all of the genetic testing on the bad cells (still hard for me to say the C word, after 2 1/2 years) were good and that people live in watch and worry for many years, to which many on here can attest. Although my WBC has been sneaking up, it's more or less stabilized at an apparently unconcerning level. I assume (and hope) that you know what I meant by the genetic testing on the CLL cells, and if by chance you don't, you absolutely need to ask about that. The Dr. probably did it, but not, he needs to. And if by chance he says it's not necessary, I think you need to find a new doctor--that's how important this information is. If that information is positive, then like David said, we'll likely be fine for a long time. But it does take time for it to sink in, and, in truth, it might not completely sink in. Even after 2 1/2 years in watch and worry, I still have times when the realization hits me like a rock in the head: there's a monster asleep inside of me, and I pray it never wakes.

Those with CLL, like me, need to know 1) most people with CLL progress slowly 2) there are very effective oral medications that stop CLL in its tracks. I take calquence daily and feel functionally cured other than for having an unusual propensity to catch colds. So I suggest you just try to relax. Unless you develop Richter's syndrome (rare) you will likely have a normal lifespan.

I must say I agree with Jo6.. My first two doctors used the term W&W I know what it meant to them but to me and mine it meant Worry and Wonder.. doctor # 3 used care and share. New doctor calls it surveillance…I just know that I am going to do everything I can to live a long while.Everyday that my feet hit the floor I am going to do whatever I can to keep moving.

CLL is not supposed to be treated ASAP..wait and watch means you are stable and do not need treatment..I had a leukemia Doctor say to me she does not recommend any chemo for me due to their is no cure for CLL ..and I trusted her she knew her stuff here I am 13 years plus seven months and still no chemo I just went to my new leukemia Doctor and she says no treatment needed at this time I do not plan to ever get treatment...so far I have lived a good quality of life and plan to keep it this way ..