Anyone have chronic lymphocytic leukemia (CLL)?

Yes, I was diagnosed with CLL in November '25. I'm beginning to think I haven't been communicating clearly with my Oncologist. I have been plagued with "night sweats" day and night. This is very disheartening as summer begins in Central Minnesota. When it's above 75 degrees F. I go into the house and sit under the air conditioner at 73 degrees.
My daughter tells me the "hot spells" are a sign my body is fighting the CLL.
Has anyone heard off a non-professional-diagnosis like this?

Hi @1retiredcboperator, Welcome to Mayo Connect. I’m from Wisconsin and can commiserate with you about the hot, sweltering summers! You don’t need any extra help with the night sweats associated with your CLL.

I’m not quite sure what you mean about a non-professional diagnosis. Your oncologist diagnosed you with CLL, Chronic lymphocytic leukemia. This is often a slowly developing form of leukemia where patients may go years before having to start any treatment for the disease. But that can also depend on how far along the patient is in the CLL journey before it was discovered.
Because CLL can develop so slowly, in early stages, people seldom have symptoms and the abnormalities are found only by happenstance during routine blood work. So some people may have had CLL for many years before it was diagnosed leading them to require treatment sooner after discovery.

Night sweats are symptomatic of CLL because of an immune response to the B lymphocytes by the CLL. Just as your body temperature rises when you have an infection, it will sometimes rise when your body tries to fight off cancer cells. This may cause excessive sweating. However it’s generally at night. If you’re finding that you are perspiring more, it may be time to talk with your oncologist again.

I found several articles for you.
The first is from Patient Power which focuses on CLL and night sweats
https://www.patientpower.info/chronic-lymphocytic-leukemia/cll-night-sweats
Also this informational article from Mayo regarding CLL:
https://www.mayoclinic.org/diseases-conditions/chronic-lymphocytic-leukemia/symptoms-causes/syc-20352428
And this from Very Well Health: Stages of Chronic Lymphocytic Leukemia (CLL)
https://www.verywellhealth.com/stages-of-cll-8680324
As @tomatack mentioned in this reply to you https://connect.mayoclinic.org/comment/1591676/ , it’s important to be seen by a CLL specialist. What has your oncologist told you about your CLL diagnosis and the stage of disease? Are you in an active surveillance period where you have followup blood work every few months? Have you told your doctor about your night and day sweats?

Hello - I am new to this board. I am 66 and was diagnosed late last year. My numbers are only slightly out of range and don't go up or down much between tests. I have the 13.2 deletion -which I'm told is favorable.

So far, I feel fine physically. I walk everyday and lift weights 3-4x a week. Can get through a round of golf in the Phoenix heat ok. I' m in better physical condition than virtually all my peers.

But the mental part has been hard to handle. I know I am only 5-6 months post diagnosis - so I need time. But I have to accept things as they are and move one. After all, I made it to 66 and a lot of people - over 80% - over 65 have chronic conditions.

Nevertheless, I find myself obsessing a bit about this - especially when I have a blood draw. I can go overboard researching and asking various AI tools to interpret things for me.

So - my question to my follow travelers who have been on the CLL road longer than I..when did you accept and simply put things out of your mind? Have the blood tests become routine for you ?

Hello - I am new to this board. I am 66 and was diagnosed late last year. My numbers are only slightly out of range and don't go up or down much between tests. I have the 13.2 deletion -which I'm told is favorable.

So far, I feel fine physically. I walk everyday and lift weights 3-4x a week. Can get through a round of golf in the Phoenix heat ok. I' m in better physical condition than virtually all my peers.

But the mental part has been hard to handle. I know I am only 5-6 months post diagnosis - so I need time. But I have to accept things as they are and move one. After all, I made it to 66 and a lot of people - over 80% - over 65 have chronic conditions.

Nevertheless, I find myself obsessing a bit about this - especially when I have a blood draw. I can go overboard researching and asking various AI tools to interpret things for me.

So - my question to my follow travelers who have been on the CLL road longer than I..when did you accept and simply put things out of your mind? Have the blood tests become routine for you ?