CLL diagnosis: Anyone on watch and wait?

Watch and Wait is likely appropriate, assuming you’ve had stable lymphocyte counts and other markers are reasonable. If you’re not seeing a true CLL expert, get a second opinion from one. Check out the CLL Society website.

@hgoerzen, I hope you saw the helpful post from @minnesotajim. CLL is a slow growing leukemia and often doesn't require treatment. I'm tagging a few other members who have experience with watch and wait treatment for CLL like @otto2023 @janicegoe23 @sweetsuzy @chefdeb and others.

It can be nerve-wracking to hear that you have a blood cancer and no treatment is required. I prefer the term active surveillance, which for me, is more accurate. Your treatment is that you will be closely monitored. Should something change, your treatment will be changed.

@hgoerzen, it sounds like your condition has been stable for 2 years and that watch and wait remains the recommended treatment option. Has something changed that you feel watch and wait should be reconsidered?

I had bookmarked this post to give me perspective on the disease. Actually, I had failed to bookmark when she posted this a few years ago and only did so with the more recent post.

"nana120 | @nana120 | Apr 9 9:45am
Yes, since 1996 with only having oral chemo 3 time when my white count became 80-100. I have been stable since 2015 with just blood work twice a year to check. It was scary at first, but I remember my first oncologist telling me to go about my life as though nothing had changed. It took a while, but eventually I did."

@colleenyoung my husband was diagnosed with stage one lung cancer in 2022 and had surgery in 2023 at MOFFITT, however after surgery he was diagnosed with CLL. Since then his WBC jumped from 23 ( in 2023) to 127 in December 2025. His doctor is in Watch and wait strategy. My husband is loosing weight, he has blood tests every month and they check his weight at the same time. Since his November test he went from 179 to 171, I can see that he gets weaker but still no suggestion from doctor about treatment and when to start it. I am not sure what she is waiting for.
His Hgb is 12.5, plat-90, Lymph #121.25, Mono#-1.67, his doctor discusses with us only his WBC 🙁

@colleenyoung
I was diagnosed with CLL two/three years ago. Nothing happened for a couple years. Then it flared up and I received two units of blood and four infusions of a chemical. Then I had five monthly blood tests which were good. My Doctor has now said instead of monthly blood tests it will be every three months unless symptoms come up.
So one has to listen to their Doctor, or get a new Doctor etc. I guess I’m in remission.I have a well educated/experienced Doctor whose specialty is CLL. I am 77 lived a full life with few regrets. So when one gets older health issues pop up as CLL popped up with me. So I deal with it as best as I can. No matter what happens in anyone’s case my recommendation is have/keep a positive attitude and live your life to the best. But having a “POSITIVE ATTITUDE” is a good thing. I’m thinking PA is an extremely good attribute to have. What I like about my Doctor she told me that once one has CLL it can go into remission or come back with a vengeance.
So I just go on with my life and see what happens.