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.

I was diagnosed in 2008. I am currently 70. I had high lymphocytes identified with a routine CBC, with CLL confirmed by Fish and flow cytometry. I see my hematologist every three to four months, now. It has moved from every six months. I actually have two hematologist, one at Mayo Rochester and one at Mayo Jacksonville. I have blood work done each visit and a CT scan done annually. My lymphocyte count seems to have stabilized in the 80,000, but in the past has been over 100,000. I have had no treatments. I am having CT scans done annually as a result of the size of lymph nodes in my abdomen. The lymph nodes in my abdomen are approaching 10 cm. Visible lymph nodes, ie neck and under arms, are larger than normal, but not really visible to an untrained eye. They are also watching closely my platelets and hemoglobin. My platelets seem to move between 110 and 130.
My understanding is I could start treatment as a result of the size of my abdominal lymph nodes. However, as I essentially have no other symptoms or quality of life issues ( I run four miles three or four times a week) and there is no evidence that early treatment is better, the doctors and I have continued with watch and wait.
Last month during my three month visit my neutrophils were usually low. Yesterday, a month later they appear to have returned to a normal level. If they had not returned the doctors and I had discussed treatment options. We discussed a BTK inhibitor, Acalabrutinib or Zanubrutinib, or a new combination treatment of either Acalabrutinib or Zanubrutinib and venetoclax. The doctor was very excited about the combination treatment. While not FDA approved yet, there was a way for me to receive it. I was going to be asking this group for insights on the two treatment options, but it appears I now have some additional time before treatment. I consider more time great as hopefully there will be even better understanding of the various alternatives.